Pyoderma Gangrenosum

Question:

I had this fun condition too; although it stopped after my ileostomy. Mine was helped by permanganate of potsh (sp?) baths. Some concentrate was added to bath water and I would just soak. Active PD has gone now, but it did leave scars on my legs. NC

: I have PD and have had no success with any typical meds. No matter what my : doctor and I thew at it, they just seemed to get bigger, with new ones : popping up. Recently, my dermatologist put me on cyclosporine. I began : noticing a positive change almost immediately. 3 of them have nearly : healed completely. My largest one, which is VERY big and deep is making : good progress, and it’s been there for nearly a year! : I haven’t seen them, but my dermatologist says that there are several : recent studies showing that cyclosporine may be the best choice of : treatment for pyoderma gangrenosum. All I can say is that it’s working : for me.

Response:

As a skin care nurse I would suggest you checking out moisture barrier ointments at your local health supply store. There are several companies that manufacture a moisture barrier ointment, all should contain petrolatum with vitamins. After gently wiping the affected, put a thick layer on the sore area. At the passage of stool, the feces will come in contact with the ointment and you will be wiping the ointment away from your skin rather than taking the first layer of skin off. If really, really irritated (i.e. bleeding) check out zinc based products until the area is less inflammed, then switch to the moisture barrier ointment. Please be advised that you should use the moisture barrier ointment even after the area heals, as a preventative measure. Good Luck

Response:

I have PD and have had no success with any typical meds. No matter what my doctor and I thew at it, they just seemed to get bigger, with new ones popping up. Recently, my dermatologist put me on cyclosporine. I began noticing a positive change almost immediately. 3 of them have nearly healed completely. My largest one, which is VERY big and deep is making good progress, and it’s been there for nearly a year! I haven’t seen them, but my dermatologist says that there are several recent studies showing that cyclosporine may be the best choice of treatment for pyoderma gangrenosum. All I can say is that it’s working for me. Hope this is helpful, Sandy

Response:

hello, i don’t have UC anymore but now i have a j-pouch the acids can seem to irritate me sometimes but it helps to wipe with Baby wipes after regular wiping so it keeps it clean. I use a cream called Special care moisture barrier ointment Made by Bard inc. It is a skin protectant and works pretty good. tom age 14, – Hide quoted text — Show quoted text -> Path: news.NetVision.net.il!news-dc.gsl.net!news.gsl.net!news-lond.gsl.net!news.g sl.net!news-paris.gsl.net!news.gsl.net!news-stkh.gsl.net!news.gsl.net!news- p > Newsgroups: alt.support.crohns-colitis > Organization: America Online, Inc. (1-800-827-6364) > Lines: 16 > NNTP-Posting-Host: newsbf02.mail.aol.com > X-Newsreader: AOL Offline Reader > 38 yr old male, I have u.c , symptoms mostly under control with > sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and > that is the soreness of my anus. It gets very irritated after a bowel > movement, sometimes UNBEARABLE for days with big red splotches that FEEL > like blisters! g.i. sent me to the dermatologist who was NOT impressed and > basically told me I would have to live with it : he gave me some cream > with cortisone that he told me to use sparingly for it would thin my skin > and makes things worse. Sometimes I’m so sore I feel like crying,. When I > have it bad I can’t stand to sit, go to a movie etc… What can I do > Luis Moreno A.K.A. The Jazz Buffalo > "Esas cosas en la vida que parecen increibles, se repiten diariamente." > Jose Alfredo Jimenez > (Seemingly incredible things are a daily occurrence) > 16 year old female has a very similar problem to yours. my g.i. gave me a > cream named Proctostorin ,I put it on regulary 3-4 times a day and it’s proved > itself to me. > A Crohnie

Response:

- Hide quoted text — Show quoted text – >38 yr old male, I have u.c , symptoms mostly under control with >sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and >that is the soreness of my anus. It gets very irritated after a bowel >movement, sometimes UNBEARABLE for days with big red splotches that FEEL >like blisters! g.i. sent me to the dermatologist who was NOT impressed and >basically told me I would have to live with it : he gave me some cream >with cortisone that he told me to use sparingly for it would thin my skin >and makes things worse. Sometimes I’m so sore I feel like crying,. When I >have it bad I can’t stand to sit, go to a movie etc… What can I do >Luis Moreno A.K.A. The Jazz Buffalo >"Esas cosas en la vida que parecen increibles, se repiten diariamente." > Jose Alfredo Jimenez >(Seemingly incredible things are a daily occurrence)

Find a doctor who will prescribe XYLOCAIN 2. 5%+ICHTHYOL ointment which you would apply as needed. It is a common hemmoroid treatment. Gary Gaugler Modern surfers use PC boards. You can too at http://photoweb.net

Response:

Lori – This sounds like one of those places that sells 500 lb jars of mustard and cans of Prego the size of a VW Van. Pass the mustard please.. I remember times when 42 rolls was a couple of days work. Yikes! – Mick

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– Hide quoted text — Show quoted text -> Path: news.NetVision.net.il!news-dc.gsl.net!news.gsl.net!news-lond.gsl.net!news.g sl.net!news-paris.gsl.net!news.gsl.net!news-stkh.gsl.net!news.gsl.net!news- peer.gsl.net!news.gsl.net!portc01.blue.aol.com!newstf01.news.aol.com!newsbf 02.news.aol.com!not-for-mail > Newsgroups: alt.support.crohns-colitis > Organization: America Online, Inc. (1-800-827-6364) > Lines: 16 > NNTP-Posting-Host: newsbf02.mail.aol.com > X-Newsreader: AOL Offline Reader > 38 yr old male, I have u.c , symptoms mostly under control with > sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and > that is the soreness of my anus. It gets very irritated after a bowel > movement, sometimes UNBEARABLE for days with big red splotches that FEEL > like blisters! g.i. sent me to the dermatologist who was NOT impressed and > basically told me I would have to live with it : he gave me some cream > with cortisone that he told me to use sparingly for it would thin my skin > and makes things worse. Sometimes I’m so sore I feel like crying,. When I > have it bad I can’t stand to sit, go to a movie etc… What can I do > Luis Moreno A.K.A. The Jazz Buffalo > "Esas cosas en la vida que parecen increibles, se repiten diariamente." > Jose Alfredo Jimenez > (Seemingly incredible things are a daily occurrence)

16 year old female has a very similar problem to yours. my g.i. gave me a cream named Proctostorin ,I put it on regulary 3-4 times a day and it’s proved itself to me. A Crohnie

Response:

> I have found that Charmin Ultra with aloe to be the best TP ever. A tad > expensive, and the way we go through TP in general for a while I tried > to economize. But no more. Life’s too short to go through it with a > sore butt. > Regards, > Bill Robertson > http://qurlyjoe.bu.edu/cduchome.html > You’d think I wouldn’t even have to mention that my opinions are > my own, and are not necessarily shared by my employer.

Here is a big laugh for you all, I go to a place called "Sam’s membership Warehouse" and I purchase my Charmin by the only size they carry which is 42-rolls to the package, as Sam’s Warehouse is a place in where you purchase anything in bulk from soda to chips to meats and much, much more. I used to years ago use cheaper toilet paper but due to the amount of time I spend in the bathroom, which depending on the day is anywhere from 17 to at my worse of 25 times a day trust me I need my Charmin and even with it at times I still end up with a sore butt <UGH> Take Care Everyone & Good Health to all Always (: Lori

Response:

I have found that Charmin Ultra with aloe to be the best TP ever. A tad expensive, and the way we go through TP in general for a while I tried to economize. But no more. Life’s too short to go through it with a sore butt. Regards, Bill Robertson http://qurlyjoe.bu.edu/cduchome.html You’d think I wouldn’t even have to mention that my opinions are my own, and are not necessarily shared by my employer.

Response:

If I were you I would try Aloe Vera gel topically. you can apply it as often as needed ( no side effects ). You can also mix it with a very small amount of unsented hand or face cream. I’ve had similar problems ( less severe ) during flares and get relief in 24hours from Aloe gel. You can often find it with the sunburn stuff at most stores. Hoping you will soon be leaving this problem behind you , Tony Pope

Response:

Ah, yes. The diaper rash from hell. Know it well. Amen to all the suggestions thusfar. None of them worked for me, and I sincerely tried each and every one. I did find something that soothed it. Cheap, widely available, easy to use. A friend suggested it to me on the occasion of a severe rash, and I certainly raised an eyebrow. But what the heck–I would have tried anything. After you have bathed, take a gelatin Vitamin E capsule, bite/cut/ prick and apply the contents to the affected parts. Sound crazy? Shrug.

Response:

Luis, Luckily, the only time I had that problem was during the damn prep for the scope exam. Vaseline, or some other slimey protectant sounds good. Baby wipes are nice, but will increase the irritation once there. For my son’s butthole, when painful, I sit him in the tub with about a cup or so of white vinegar in the water. I soak his wipes in a bowl of the stuff when he’s really bad. It helps to decrease the pain & redness. Dilute vinegar will kick butt on yeast too! To an end to your "end" problem…good luck. Margaret

Response:

Hi Luis, I went to a medical supply store and bought some ointment that nurses and aides apply to patients who have incontinence problems. The kind I bought is called "Approved" Moisture Barrier Ointment made by Benjamin Ansehl Co. in St. Louis, Mo. 63132. It lists as ingredients petrolatum, octyl h;ydroxystearate, Vitamin A, Vitamin D, Fragrance, Methyl-Benezethonium Chloride, and Aloe. I have tried many things, including baby wipes and diaper rash ointments and preparation H, and this is by far the best thing I have ever used. I apply after each BM and soon my butt is not irritated any more. It has been a big relief. I bought two big tubes (7 oz. each) for a little over $5, so it is very reasonable as well. Hope your "setter" gets better! Karen Smith : : 38 yr old male, I have u.c , symptoms mostly under control with : : sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and : : that is the soreness of my anus. It gets very irritated after a bowel : : movement, sometimes UNBEARABLE for days with big red splotches that FEEL : : like blisters! g.i. sent me to the dermatologist who was NOT impressed and : : basically told me I would have to live with it : he gave me some cream : : with cortisone that he told me to use sparingly for it would thin my skin : : and makes things worse. Sometimes I’m so sore I feel like crying,. When I : : have it bad I can’t stand to sit, go to a movie etc… What can I do : : Luis Moreno A.K.A. The Jazz Buffalo : : "Esas cosas en la vida que parecen increibles, se repiten diariamente." : : : : Jose Alfredo Jimenez : : (Seemingly incredible things are a daily occurrence)

Response:

- Hide quoted text — Show quoted text – > 38 yr old male, I have u.c , symptoms mostly under control with > sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and > that is the soreness of my anus. It gets very irritated after a bowel > movement, sometimes UNBEARABLE for days with big red splotches that FEEL > like blisters! g.i. sent me to the dermatologist who was NOT impressed and > basically told me I would have to live with it : he gave me some cream > with cortisone that he told me to use sparingly for it would thin my skin > and makes things worse. Sometimes I’m so sore I feel like crying,. When I > have it bad I can’t stand to sit, go to a movie etc… What can I do > Luis Moreno A.K.A. The Jazz Buffalo > "Esas cosas en la vida que parecen increibles, se repiten diariamente." > Jose Alfredo Jimenez > (Seemingly incredible things are a daily occurrence)

I had (and still have occasionally) the same problem! Felt like the diaper rash from hell!! Coincidentally, I had a 6 month old at the time, and found that diaper rash ointment containing Zinc helped immensly! Penaten cream seemed the most releaving. The only time that didn’t work, my GP perscribed an antibiotic cream which gave me the ichys like you wouldn’t beleive (now THATS embarrasing in a crowded mall!), but it cleared up the symptoms, and I followed up with the rash ointment for the itch. Good Luck. -James

Response:

There’s a product out in a pink tube aimed at women which has a significant amount of aloe vera. It worked for me like a charm. There are all kinds of products in the hemorrhoids section that are aimed at our problem. And straight vaseline applied frequently will aprobably also work – I found the pink tube stuff better.

Response:

> 38 yr old male, I have u.c , symptoms mostly under control with > sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and > that is the soreness of my anus.

I can identify with your problem. It is sure painful and frustrating. The Olde Crohn has some advice on the subject of rectal itching which may be helpful. http://www.netline.net/novus/crohn/jan96/notes.html Decreasing the number of bowel movements by use of fiber and drugs like Imodium or Lomotil was recommended to me by my surgeon. A friend with the problem uses a hand held shower rather than sitz baths. Applying a topical antibiotic cream has worked for some. I’ve heard that applying a vaginal cream, used for yeast infections, might help. Zinc oxide killed me. I don’t know how babies tolerate it. I’ve heard so many different things. Some say to keep the area dry, but I find that applying Creamy Petroleum Jelly with Vitamin E inside the anal canal 3 times a day helps somewhat, at least short term. Aloe vera is also soothing. For the external area I’ve recently started spraying Peri Wash by Sween on my Charmin Plus TP. I haven’t found anything that actually heals the skin. Someone recommended taking a lot of Pepto Bismol to "neutralize" the digestive enzymes, but I haven’t tried it. I don’t know if it would hurt or help your UC. I’ll be sure to let you know, if I find a treatment that really works. JaneMac

Response:

Hi, whatever you do, DO NOT use anything with alchahol in it on your sore rear, it will sting like H*LL. you might want to try a sitz-bath, those help me, you can get one at any drugstore for about $10. using very warm water in the bath feels great.. Ken

Response:

I know it sounds crazy, but my g.i. put me on a daily dose of Citrucel (less gassy than Metamucil) for just this reason, and it seems to help. Prepare it with 1/2 the amount of water specified on the label. Ted Stevens : 38 yr old male, I have u.c , symptoms mostly under control with : sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and : that is the soreness of my anus. It gets very irritated after a bowel : movement, sometimes UNBEARABLE for days with big red splotches that FEEL : like blisters! g.i. sent me to the dermatologist who was NOT impressed and : basically told me I would have to live with it : he gave me some cream : with cortisone that he told me to use sparingly for it would thin my skin : and makes things worse. Sometimes I’m so sore I feel like crying,. When I : have it bad I can’t stand to sit, go to a movie etc… What can I do : Luis Moreno A.K.A. The Jazz Buffalo : "Esas cosas en la vida que parecen increibles, se repiten diariamente." : : Jose Alfredo Jimenez : (Seemingly incredible things are a daily occurrence)

Response:

My doctor currently has me on 10 mg of prednisone. As I understand it, the prednisone is to be maintained until my pyoderma gangrenosum clears up – even though there is no detectable colonic or ileal disease (I just had an ileostomy). This seemed ok at first because even dermatologist use topical steroids or local injections to help clear up pyoderma so a systemic prescription wouldnt seem to hurt things. But the prognosis on the cure for the pyoderma seems to be another month to three months even though I’ve already had the pyoderma since early july. So thats another one to three months of oral steroids (not counting tapering) even though there is no systemic disease. Considering that steroids are potentially very dangerous and that there is no active intestinal disease is the oral (e.g systemic) steroid really advisable? Whats the reason for it if topical applications will work just as well (asuming of course that they do)? -Luke

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I thought that the party line was that topical steroids had absolutely no effect on PD?

Response:

38 yr old male, I have u.c , symptoms mostly under control with sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and that is the soreness of my anus. It gets very irritated after a bowel movement, sometimes UNBEARABLE for days with big red splotches that FEEL like blisters! g.i. sent me to the dermatologist who was NOT impressed and basically told me I would have to live with it : he gave me some cream with cortisone that he told me to use sparingly for it would thin my skin and makes things worse. Sometimes I’m so sore I feel like crying,. When I have it bad I can’t stand to sit, go to a movie etc… What can I do Luis Moreno A.K.A. The Jazz Buffalo "Esas cosas en la vida que parecen increibles, se repiten diariamente." Jose Alfredo Jimenez (Seemingly incredible things are a daily occurrence)

Response:

Try baby wipes. May not work, but can’t hurt. For sitting, go to your local drugstore and buy one of those inflateable doughnut things to keep the weight off your tailbone. I think they’re meant for hemerrhoid sufferers, but it’s much the same in your case. Ask your druggist if he has any other suggestions. Try Preperation H, too, maybe? – Hide quoted text — Show quoted text – > 38 yr old male, I have u.c , symptoms mostly under control with > sulfasalazine, but my REAL problem i can’t get my g.i. to help me with and > that is the soreness of my anus. It gets very irritated after a bowel > movement, sometimes UNBEARABLE for days with big red splotches that FEEL > like blisters! g.i. sent me to the dermatologist who was NOT impressed and > basically told me I would have to live with it : he gave me some cream > with cortisone that he told me to use sparingly for it would thin my skin > and makes things worse. Sometimes I’m so sore I feel like crying,. When I > have it bad I can’t stand to sit, go to a movie etc… What can I do > Luis Moreno A.K.A. The Jazz Buffalo > "Esas cosas en la vida que parecen increibles, se repiten diariamente." > Jose Alfredo Jimenez > (Seemingly incredible things are a daily occurrence)

– "If I die of curiosity, who will entertain you with naive questions?" I only answer my mail on an average of once every two months. Be patient. http://www.visi.com/~cyli/

Response:

any time! : ) Reesie – Hide quoted text — Show quoted text – > jeffy > I haven’t gone through this, you know that. But you also know that for > the > last 10 weeks or so I’ve been in my worst flare, suffering my own severe > pain, mood swings, even the 80 mg Pred dance. So perhaps I may at least Reesie > > i know, i am driving everyone nuts with my problem. i am about to go > off > > the edge…no one around here including docs understand the pain and > what > i > > am goin thru…blood tests, blood pressure and other metabolics are way > > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > > induced side effects (narc and pred head), 5 weeks of burn-out….i need > > someone to talk too. does anyone here know of anyone that has gone thru > > this? how do i pull myself together? who do i talk to???? :-(( > > can anyone help me? > > jeff, > > cd, class of o1, > > extreme p.g., class of o2

Response:

That seems like such a long way off!!! What can you do in the mean time? : ) Reesie – Hide quoted text — Show quoted text -> i don’t see them again until the 19th. it continues to ulcerate and raise > around the edges. i am taking it to 120mg…was the only thing that stopped > it in 5 days. after 5 days they had me down to 80 from 120….too > fast…they said "if it gets worse".. what do i look for? now i know…the > blood was it but they couldn’t tell me that. now it has a 3 day jump on > me…he told me to take it up to the previous level if it worsened, the > previous level was too short given the dosage and days (120 to 80 in 5 > days)…..obviously the remicade infusions aren’t doing anything > either….oh man…bummer…..i am about to freak here. i will call docs > back on monday and tell them what i did. > jeff > Jeff, when do you go see your Dr. again? Maybe you should call him/her. > {{{{{{Jeff}}}}}} > — > Take Care, > Sherry :o) > i will call docs monday and see what i can find for help. it is starting > to > reulcerate and re-inflame…. oh man…not good….upping the pred back to > 80 mg tomorrow. > jeffy > > Sorry Jeff, I have no answers. Have you thought about going to a wound > care > > center? > > All I can do is tell you that I’m thinking about you and give you a hug. > > {{{{{{Jeff}}}}}} > > — > > Take Care, > > Sherry :o) > > i know, i am driving everyone nuts with my problem. i am about to go > off > > the edge…no one around here including docs understand the pain and > what > i > > am goin thru…blood tests, blood pressure and other metabolics are way > > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > > induced side effects (narc and pred head), 5 weeks of burn-out….i need > > someone to talk too. does anyone here know of anyone that has gone thru > > this? how do i pull myself together? who do i talk to???? :-(( > > can anyone help me? > > jeff, > > cd, class of o1, > > extreme p.g., class of o2 > > — > > Outgoing mail is certified Virus Free. > > Checked by AVG anti-virus system (http://www.grisoft.com). > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

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It took Remicade 3 weeks to work when I took it. Debs – Hide quoted text — Show quoted text -> well, yes and no…they are awfully conservative…i usually have to bring > my own for back up stash…lol i am going to see what my doc can do for me > as far as pain management monday…maybe there is somewhere i can go for > extra specialized help w/this. some of this is emotional problem with me > too….coping and dealing with it day in and day out….and i know now that > the remicade is not likely working..that has me depressed…and only the > 120mg/pred will stop the ulceration…which i failed weaning once > already…. > thanks, > jeff > At least in the hospital they can give you really good pain med’s by IV. > : ) > — > Take Care, > Sherry :o) > i agree with you, that is what i got in the hospital 2 weeks ago, and the > 120/mg pred slowed and stopped this thing. now, 100mg for 2 days/80mg for > 3 > days/60mg for 2 days including yesterday….it started reulcerizing on 2nd > day of 80 but did not know that..was a little bloodier,,,but w/o any > swelling or more hurt or inflammation around the surrounding skin, is that > worse or not….i had to make the judgement call and i was wrong. they > couldn not tell me the signs to look for… like, "more bloody". that is > what frustrates me so…unless i have a doc look at this everyday…maybe > the hospital is where i belong…don’t know right now..may end up back > there > shortly,…who knows. > thanks for all the insight everyone, it is sure appreciated…mary and i > will keep working on this but now is the weekend and try to get a doc that > will make a decision…yeah? > jeff > > Jeff, > > What are they giving ou to help with the predisone pychosis? I found > that > when > > I was on that much I was usually in the hospital but I HAD to have lots > of > > adivan and the demerol shots/ sleeping pills..to touch any of the pain > and > > crazies..are they giving you something??? Do you have an IV at home or > are > you > > taking all this pred my month? I guess that’s the other question, > wouldn’t > the > > steriods be more effective through IV then by mouth? At least for my UC > that is > > the only way it hits it hard enough. > > Just so you don’t feel alone I actually had a foot stamping, head > against > the > > wall fit at John Hopkins -when they tranffered me there and there was a > NEW > > "duggie hoswer" intern in charge. it was over a holiday weekend and he > thought > > I need not be on all those narcotics, so he stopped everything. with in > a > day i > > thought they were going to have to put me in the mental ward. It took > three > > days for me to get a real doctor to understand the mess i was in. i > can’t > > imagine 5 weeks if this is how you are feeling – call and insist if what > they > > are giving you isn’t enough, make them try something different- they do > have > > ways to control this pain and coming out of your skin feelings! > > Good luck I can feel for you! > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

that is a great help…thanks so much. the new derm doc, after seeing i have had "some" limited success with the pred., was apprehensive about doing local injections. he said i would have as much chance of it getting worse than better…there is no 100% positive cure/solution to these ulcers. you just have to keep treating it until something works. i am just dying to talk to someone that has been thru this so i can learn what the stages are and so forth. that is how i got behind the 8 ball here when it reflared wednesday and i didn’t know it. they didn’t tell me what to watch for specifically…so now it got a head start on me by 3 days and i am back to where i was 2 weeks ago when i went to er and hospital! :-(((( jeffy

– Hide quoted text — Show quoted text -> Jeff, > I have a good friend who has this PG, she did some kind of injections at > the site and some other things, and I think they’ve helped her a little. I > will send this to her in an email, and see if she can give you some advice > on what to do, or atleast let you know she went thru the same thing. > Sending you BIG hugs > (((((((JEFF)))))))))))

Response:

i am not…my next infusion is in 4 weeks…well, 3 1/2 now….but the first infusion given over 2 weeks ago should have started to kick in by now. my pcp thinks it is not working…mary called him today. he thinks i need another treatment started asap. my cpc will see me tues or wed…i am going to ask about pain management and wound care. my ulcer is about 4 inches above the ankle on the left leg….towards the inside…what do they call that orientation again??? don’t remember… well, easy to see and work with anyway. it’s now more than 2 inches in diameter and deep enough to show the rotted ends of the blood veins most near to the skin surface. one of these looks to be about 1/8 inch in diameter. i will most definitely have a "jaw bite" mark on me leg when and if this ever heals up. skin grafting is an absolute no-no in these circumstances. practice has shown that new skin will fall off within weeks and it will reulcerate larger than the original. jeffy

– Hide quoted text — Show quoted text -> Jeff, you’ve had what 2 infusions? Give it a little bit more time before > you give up on it. From what I’ve read it seems to take everyone a really > long time for their wound to heal. Unfortunately. : ( Do you have a wound > care center any where near you? I really would give one of them a call and > ask if you could talk to a dr. or go for a consultation if your insurance > would pay for it. My mom went to one a couple years ago after she had > fallen and cut her leg on a sharp point of a 2×4. It took quite a long time > to heal but, it did. Where on your leg is your wound? > — > Take Care, > Sherry :o) > well, yes and no…they are awfully conservative…i usually have to bring > my own for back up stash…lol i am going to see what my doc can do for me > as far as pain management monday…maybe there is somewhere i can go for > extra specialized help w/this. some of this is emotional problem with me > too….coping and dealing with it day in and day out….and i know now that > the remicade is not likely working..that has me depressed…and only the > 120mg/pred will stop the ulceration…which i failed weaning once > already…. > thanks, > jeff > At least in the hospital they can give you really good pain med’s by IV. > : ) > — > Take Care, > Sherry :o) > i agree with you, that is what i got in the hospital 2 weeks ago, and the > 120/mg pred slowed and stopped this thing. now, 100mg for 2 days/80mg for > 3 > days/60mg for 2 days including yesterday….it started reulcerizing on 2nd > day of 80 but did not know that..was a little bloodier,,,but w/o any > swelling or more hurt or inflammation around the surrounding skin, is that > worse or not….i had to make the judgement call and i was wrong. they > couldn not tell me the signs to look for… like, "more bloody". that is > what frustrates me so…unless i have a doc look at this everyday…maybe > the hospital is where i belong…don’t know right now..may end up back > there > shortly,…who knows. > thanks for all the insight everyone, it is sure appreciated…mary and i > will keep working on this but now is the weekend and try to get a doc that > will make a decision…yeah? > jeff > > Jeff, > > What are they giving ou to help with the predisone pychosis? I found > that > when > > I was on that much I was usually in the hospital but I HAD to have lots > of > > adivan and the demerol shots/ sleeping pills..to touch any of the pain > and > > crazies..are they giving you something??? Do you have an IV at home or > are > you > > taking all this pred my month? I guess that’s the other question, > wouldn’t > the > > steriods be more effective through IV then by mouth? At least for my UC > that is > > the only way it hits it hard enough. > > Just so you don’t feel alone I actually had a foot stamping, head > against > the > > wall fit at John Hopkins -when they tranffered me there and there was a > NEW > > "duggie hoswer" intern in charge. it was over a holiday weekend and he > thought > > I need not be on all those narcotics, so he stopped everything. with in > a > day i > > thought they were going to have to put me in the mental ward. It took > three > > days for me to get a real doctor to understand the mess i was in. i > can’t > > imagine 5 weeks if this is how you are feeling – call and insist if what > they > > are giving you isn’t enough, make them try something different- they do > have > > ways to control this pain and coming out of your skin feelings! > > Good luck I can feel for you! > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

Jeff, I have a good friend who has this PG, she did some kind of injections at the site and some other things, and I think they’ve helped her a little. I will send this to her in an email, and see if she can give you some advice on what to do, or atleast let you know she went thru the same thing. Sending you BIG hugs (((((((JEFF)))))))))))

Response:

you are so sweet…thanks so much,,,and i take the hug and prayers….so nice.. jeff

– Hide quoted text — Show quoted text -> Jeff- > I wish I could help you, but all I can do is send you some hugs {{{{{Jeff}}}}}. > I will say a special prayer that the ulcerations heal for you. I can’t even > imagine the pain. > Be well- > Tracy > CD class of ‘98 > my homepage: > http://home.talkcity.com/ParadiseDr/goodboie/index.html > : ) smile – it makes people wonder what you’re up to!

Response:

Jeff- I wish I could help you, but all I can do is send you some hugs {{{{{Jeff}}}}}. I will say a special prayer that the ulcerations heal for you. I can’t even imagine the pain. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html : ) smile – it makes people wonder what you’re up to!

Response:

Jeff, you’ve had what 2 infusions? Give it a little bit more time before you give up on it. From what I’ve read it seems to take everyone a really long time for their wound to heal. Unfortunately. : ( Do you have a wound care center any where near you? I really would give one of them a call and ask if you could talk to a dr. or go for a consultation if your insurance would pay for it. My mom went to one a couple years ago after she had fallen and cut her leg on a sharp point of a 2×4. It took quite a long time to heal but, it did. Where on your leg is your wound? — Take Care, Sherry :o) well, yes and no…they are awfully conservative…i usually have to bring my own for back up stash…lol i am going to see what my doc can do for me as far as pain management monday…maybe there is somewhere i can go for extra specialized help w/this. some of this is emotional problem with me too….coping and dealing with it day in and day out….and i know now that the remicade is not likely working..that has me depressed…and only the 120mg/pred will stop the ulceration…which i failed weaning once already…. thanks, jeff

– Hide quoted text — Show quoted text -> At least in the hospital they can give you really good pain med’s by IV. > : ) > — > Take Care, > Sherry :o) > i agree with you, that is what i got in the hospital 2 weeks ago, and the > 120/mg pred slowed and stopped this thing. now, 100mg for 2 days/80mg for 3 > days/60mg for 2 days including yesterday….it started reulcerizing on 2nd > day of 80 but did not know that..was a little bloodier,,,but w/o any > swelling or more hurt or inflammation around the surrounding skin, is that > worse or not….i had to make the judgement call and i was wrong. they > couldn not tell me the signs to look for… like, "more bloody". that is > what frustrates me so…unless i have a doc look at this everyday…maybe > the hospital is where i belong…don’t know right now..may end up back there > shortly,…who knows. > thanks for all the insight everyone, it is sure appreciated…mary and i > will keep working on this but now is the weekend and try to get a doc that > will make a decision…yeah? > jeff > Jeff, > What are they giving ou to help with the predisone pychosis? I found that > when > I was on that much I was usually in the hospital but I HAD to have lots > of > adivan and the demerol shots/ sleeping pills..to touch any of the pain and > crazies..are they giving you something??? Do you have an IV at home or are > you > taking all this pred my month? I guess that’s the other question, wouldn’t > the > steriods be more effective through IV then by mouth? At least for my UC > that is > the only way it hits it hard enough. > Just so you don’t feel alone I actually had a foot stamping, head against > the > wall fit at John Hopkins -when they tranffered me there and there was a > NEW > "duggie hoswer" intern in charge. it was over a holiday weekend and he > thought > I need not be on all those narcotics, so he stopped everything. with in a > day i > thought they were going to have to put me in the mental ward. It took > three > days for me to get a real doctor to understand the mess i was in. i can’t > imagine 5 weeks if this is how you are feeling – call and insist if what > they > are giving you isn’t enough, make them try something different- they do > have > ways to control this pain and coming out of your skin feelings! > Good luck I can feel for you! > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

well, yes and no…they are awfully conservative…i usually have to bring my own for back up stash…lol i am going to see what my doc can do for me as far as pain management monday…maybe there is somewhere i can go for extra specialized help w/this. some of this is emotional problem with me too….coping and dealing with it day in and day out….and i know now that the remicade is not likely working..that has me depressed…and only the 120mg/pred will stop the ulceration…which i failed weaning once already…. thanks, jeff

Response:

At least in the hospital they can give you really good pain med’s by IV. : ) — Take Care, Sherry :o) i agree with you, that is what i got in the hospital 2 weeks ago, and the 120/mg pred slowed and stopped this thing. now, 100mg for 2 days/80mg for 3 days/60mg for 2 days including yesterday….it started reulcerizing on 2nd day of 80 but did not know that..was a little bloodier,,,but w/o any swelling or more hurt or inflammation around the surrounding skin, is that worse or not….i had to make the judgement call and i was wrong. they couldn not tell me the signs to look for… like, "more bloody". that is what frustrates me so…unless i have a doc look at this everyday…maybe the hospital is where i belong…don’t know right now..may end up back there shortly,…who knows. thanks for all the insight everyone, it is sure appreciated…mary and i will keep working on this but now is the weekend and try to get a doc that will make a decision…yeah? jeff

– Hide quoted text — Show quoted text -> Jeff, > What are they giving ou to help with the predisone pychosis? I found that when > I was on that much I was usually in the hospital but I HAD to have lots of > adivan and the demerol shots/ sleeping pills..to touch any of the pain and > crazies..are they giving you something??? Do you have an IV at home or are you > taking all this pred my month? I guess that’s the other question, wouldn’t the > steriods be more effective through IV then by mouth? At least for my UC that is > the only way it hits it hard enough. > Just so you don’t feel alone I actually had a foot stamping, head against the > wall fit at John Hopkins -when they tranffered me there and there was a NEW > "duggie hoswer" intern in charge. it was over a holiday weekend and he thought > I need not be on all those narcotics, so he stopped everything. with in a day i > thought they were going to have to put me in the mental ward. It took three > days for me to get a real doctor to understand the mess i was in. i can’t > imagine 5 weeks if this is how you are feeling – call and insist if what they > are giving you isn’t enough, make them try something different- they do have > ways to control this pain and coming out of your skin feelings! > Good luck I can feel for you!

— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

i agree with you, that is what i got in the hospital 2 weeks ago, and the 120/mg pred slowed and stopped this thing. now, 100mg for 2 days/80mg for 3 days/60mg for 2 days including yesterday….it started reulcerizing on 2nd day of 80 but did not know that..was a little bloodier,,,but w/o any swelling or more hurt or inflammation around the surrounding skin, is that worse or not….i had to make the judgement call and i was wrong. they couldn not tell me the signs to look for… like, "more bloody". that is what frustrates me so…unless i have a doc look at this everyday…maybe the hospital is where i belong…don’t know right now..may end up back there shortly,…who knows. thanks for all the insight everyone, it is sure appreciated…mary and i will keep working on this but now is the weekend and try to get a doc that will make a decision…yeah? jeff

Response:

jeffy

– Hide quoted text — Show quoted text -> I haven’t gone through this, you know that. But you also know that for the > last 10 weeks or so I’ve been in my worst flare, suffering my own severe > pain, mood swings, even the 80 mg Pred dance. So perhaps I may at least > i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what > i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2

Response:

i don’t see them again until the 19th. it continues to ulcerate and raise around the edges. i am taking it to 120mg…was the only thing that stopped it in 5 days. after 5 days they had me down to 80 from 120….too fast…they said "if it gets worse".. what do i look for? now i know…the blood was it but they couldn’t tell me that. now it has a 3 day jump on me…he told me to take it up to the previous level if it worsened, the previous level was too short given the dosage and days (120 to 80 in 5 days)…..obviously the remicade infusions aren’t doing anything either….oh man…bummer…..i am about to freak here. i will call docs back on monday and tell them what i did. jeff

– Hide quoted text — Show quoted text -> Jeff, when do you go see your Dr. again? Maybe you should call him/her. > {{{{{{Jeff}}}}}} > — > Take Care, > Sherry :o) > i will call docs monday and see what i can find for help. it is starting to > reulcerate and re-inflame…. oh man…not good….upping the pred back to > 80 mg tomorrow. > jeffy > Sorry Jeff, I have no answers. Have you thought about going to a wound > care > center? > All I can do is tell you that I’m thinking about you and give you a hug. > {{{{{{Jeff}}}}}} > — > Take Care, > Sherry :o) > i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what > i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2 > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

Jeff, What are they giving ou to help with the predisone pychosis? I found that when I was on that much I was usually in the hospital but I HAD to have lots of adivan and the demerol shots/ sleeping pills..to touch any of the pain and crazies..are they giving you something??? Do you have an IV at home or are you taking all this pred my month? I guess that’s the other question, wouldn’t the steriods be more effective through IV then by mouth? At least for my UC that is the only way it hits it hard enough. Just so you don’t feel alone I actually had a foot stamping, head against the wall fit at John Hopkins -when they tranffered me there and there was a NEW "duggie hoswer" intern in charge. it was over a holiday weekend and he thought I need not be on all those narcotics, so he stopped everything. with in a day i thought they were going to have to put me in the mental ward. It took three days for me to get a real doctor to understand the mess i was in. i can’t imagine 5 weeks if this is how you are feeling – call and insist if what they are giving you isn’t enough, make them try something different- they do have ways to control this pain and coming out of your skin feelings! Good luck I can feel for you!

Response:

((((((((((Jeff)))))))))))) I think Linda’s idea of a pain clinic is a good one. I’d also call the doc and make sure he knows it is getting worse. Sure wish there was something I could do for you! Rebecca

– Hide quoted text — Show quoted text – any > answers for you hon. How about asking your dr to refer you to a Pain > Management Clinic? > Hugs, Linda > i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what > i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2

Response:

Jeff, when do you go see your Dr. again? Maybe you should call him/her. {{{{{{Jeff}}}}}} — Take Care, Sherry :o) i will call docs monday and see what i can find for help. it is starting to reulcerate and re-inflame…. oh man…not good….upping the pred back to 80 mg tomorrow. jeffy

– Hide quoted text — Show quoted text -> Sorry Jeff, I have no answers. Have you thought about going to a wound care > center? > All I can do is tell you that I’m thinking about you and give you a hug. > {{{{{{Jeff}}}}}} > — > Take Care, > Sherry :o) > i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2 > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

Jeff you can talk about this anytime here or email me. The pain management that Linda mentioned is excellent. I have a thought, it’s a little extreme but it might help. Contact your local health department or CDC and tell them what you have and how bad it is. Maybe they can help you find someone to take care of it. Let me chew on it a while. I will copy this to my files so I remember. I take it that person never contacted you back. Can I email her for you? Email me with your answer. UM MOM Susan – Hide quoted text — Show quoted text -> i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2

Response:

no, this damn thing goes back to 100mg….shhheezzz jeff – Hide quoted text — Show quoted text -> i will call docs monday and see what i can find for help. it is starting to > reulcerate and re-inflame…. oh man…not good….upping the pred back to > 80 mg tomorrow. > jeffy > Sorry Jeff, I have no answers. Have you thought about going to a wound > care > center? > All I can do is tell you that I’m thinking about you and give you a hug. > {{{{{{Jeff}}}}}} > — > Take Care, > Sherry :o) > i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what > i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2 > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

I haven’t gone through this, you know that. But you also know that for the last 10 weeks or so I’ve been in my worst flare, suffering my own severe pain, mood swings, even the 80 mg Pred dance. So perhaps I may at least – Hide quoted text — Show quoted text -> i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2

Response:

i will call docs monday and see what i can find for help. it is starting to reulcerate and re-inflame…. oh man…not good….upping the pred back to 80 mg tomorrow. jeffy

Response:

answers for you hon. How about asking your dr to refer you to a Pain Management Clinic? Hugs, Linda – Hide quoted text — Show quoted text -> i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2

Response:

Hi Jeff, I haven’t gone through it, but I’ve been through other rotten stuff. Please complain as much as you want. It IS a terrible thing you are enduring. You haven’t been posting about yourself very much lately and I wonder what’s up. Do remember that the pred is crazy-making. When you’re right in the middle of it, it’s difficult to see through it. I’m sorry about the pain too. Set up some pillow punching bag or something, unless you think it might bother your blood pressure. It sounds like the leg is better than it was before except that it really hurts like h_ll. Is there any chronic pain people you can talk too? I hope your situation is temporary, but 5 weeks already? Yikes! That would drive anyone nuts. Keep hanging in there! It has to get better than this. Elizabeth – Hide quoted text — Show quoted text -> i know, i am driving everyone nuts with my problem. i am about to go off > the edge…no one around here including docs understand the pain and what i > am goin thru…blood tests, blood pressure and other metabolics are way > out’a whack….i am in my 5th week of agonizing pain, 5th week of drug > induced side effects (narc and pred head), 5 weeks of burn-out….i need > someone to talk too. does anyone here know of anyone that has gone thru > this? how do i pull myself together? who do i talk to???? :-(( > can anyone help me? > jeff, > cd, class of o1, > extreme p.g., class of o2

Response:

Sorry Jeff, I have no answers. Have you thought about going to a wound care center? All I can do is tell you that I’m thinking about you and give you a hug. {{{{{{Jeff}}}}}} — Take Care, Sherry :o) i know, i am driving everyone nuts with my problem. i am about to go off the edge…no one around here including docs understand the pain and what i am goin thru…blood tests, blood pressure and other metabolics are way out’a whack….i am in my 5th week of agonizing pain, 5th week of drug induced side effects (narc and pred head), 5 weeks of burn-out….i need someone to talk too. does anyone here know of anyone that has gone thru this? how do i pull myself together? who do i talk to???? :-(( can anyone help me? jeff, cd, class of o1, extreme p.g., class of o2 — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

i know, i am driving everyone nuts with my problem. i am about to go off the edge…no one around here including docs understand the pain and what i am goin thru…blood tests, blood pressure and other metabolics are way out’a whack….i am in my 5th week of agonizing pain, 5th week of drug induced side effects (narc and pred head), 5 weeks of burn-out….i need someone to talk too. does anyone here know of anyone that has gone thru this? how do i pull myself together? who do i talk to???? :-(( can anyone help me? jeff, cd, class of o1, extreme p.g., class of o2

Response:

>:: I have Crohn’s and maybe this pyoderma stuff too. If it’s a circular >:: series of red bumps that can itch and sometimes flake, like dry skin, >then >:: yes, I have had this condition. Only on the lower portion of my legs, >:: from the knees down. Is this what you’re talking about? >:That is not PG. PG is large swellings full of yellow pus (like boils). >Do you know what this might be? Is it related to Crohn’s disease? It seems >to get worse when I have a flare-up. >I don’t, but chances are that a dermatologist could tell you in 5 seconds >or so.

Unfortunately, I’ve tried that as well — the dermatologist also diagnosed it as ringworm. Prescribed ringworm medication had no effect. Joe Warmbrodt Houston, TX ("Have a nice day, and don’t forget to wear some pants.")

Response:

There are lots of different skin conditions that people with CD tend to get with more frequency than people without CD. Like someone else said, a dermatologist could figure it out very quickly.

Response:

I don’t, but chances are that a dermatologist could tell you in 5 seconds or so.

Response:

:: I have Crohn’s and maybe this pyoderma stuff too. If it’s a circular :: series of red bumps that can itch and sometimes flake, like dry skin, then :: yes, I have had this condition. Only on the lower portion of my legs, :: from the knees down. Is this what you’re talking about? :That is not PG. PG is large swellings full of yellow pus (like boils). Do you know what this might be? Is it related to Crohn’s disease? It seems to get worse when I have a flare-up. Joe Warmbrodt Houston, TX ("Have a nice day, and don’t forget to wear some pants.")

Response:

only if someone can be here with me!!! jeffy

– Hide quoted text — Show quoted text -> Jeff, it sounds like the pred is helping already. I hope it keep up. And > then you can enjoy the late nights that you’ll be having when you’re taking > the pred. <G> > — > Take Care, > Sherry :o) > i called u of m today, they started me on 80mg/day prednisone for the short > term treatment. my swelling and soreness started at just below the knee > and went all the way to my foot with the ulcer in the middle, of couse. in > 7 hours, some of the swelling and redness to the outside has subsided > as far as my cocktails, i have slept really well the last few nites…thanks > you very much….lol so now, i get to go on the "pred trip" like so many > of my friends here! are we having fun on this ride yet? i just got > on….wwwweeeeeeeeeeeeeeee!!!!! > jeffy > Leslie, > I was diagnosed with it this morning, it’s right beside my (L) > ankle…after a > few weeks of ignoring and poking it most of the time….I was given > antibiotics Pennicillin and a cream to put on it, for the next week or so! > I > was told by the dr at the clinic most people with CD might get something > like > that…..Take Care Tania > > Hi, > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > diagnosed > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > looking > > ulcer on her knee. > > They have explained some people with auto immune problems can get these > tho > > the docs themselves have never actually seen it. > > They have put her on 60mg of prednisone(raised from 5mg per day, she was > > weaning off) She will be at the 60mg level for 4 days. And a couple > other > > drugs and creams for it. > > I am wondering if any of you have suffered with this as the doctors have > > never seen it except in the medical books. > > Thanks in advance. > > Leslie > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

Jeff, it sounds like the pred is helping already. I hope it keep up. And then you can enjoy the late nights that you’ll be having when you’re taking the pred. <G> — Take Care, Sherry :o) i called u of m today, they started me on 80mg/day prednisone for the short term treatment. my swelling and soreness started at just below the knee and went all the way to my foot with the ulcer in the middle, of couse. in 7 hours, some of the swelling and redness to the outside has subsided as far as my cocktails, i have slept really well the last few nites…thanks you very much….lol so now, i get to go on the "pred trip" like so many of my friends here! are we having fun on this ride yet? i just got on….wwwweeeeeeeeeeeeeeee!!!!! jeffy – Hide quoted text — Show quoted text -> Leslie, > I was diagnosed with it this morning, it’s right beside my (L) ankle…after a > few weeks of ignoring and poking it most of the time….I was given > antibiotics Pennicillin and a cream to put on it, for the next week or so! I > was told by the dr at the clinic most people with CD might get something like > that…..Take Care Tania > Hi, > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking > ulcer on her knee. > They have explained some people with auto immune problems can get these tho > the docs themselves have never actually seen it. > They have put her on 60mg of prednisone(raised from 5mg per day, she was > weaning off) She will be at the 60mg level for 4 days. And a couple other > drugs and creams for it. > I am wondering if any of you have suffered with this as the doctors have > never seen it except in the medical books. > Thanks in advance. > Leslie

— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

i called u of m today, they started me on 80mg/day prednisone for the short term treatment. my swelling and soreness started at just below the knee and went all the way to my foot with the ulcer in the middle, of couse. in 7 hours, some of the swelling and redness to the outside has subsided as far as my cocktails, i have slept really well the last few nites…thanks you very much….lol so now, i get to go on the "pred trip" like so many of my friends here! are we having fun on this ride yet? i just got on….wwwweeeeeeeeeeeeeeee!!!!! jeffy – Hide quoted text — Show quoted text -> Leslie, > I was diagnosed with it this morning, it’s right beside my (L) ankle…after a > few weeks of ignoring and poking it most of the time….I was given > antibiotics Pennicillin and a cream to put on it, for the next week or so! I > was told by the dr at the clinic most people with CD might get something like > that…..Take Care Tania > Hi, > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking > ulcer on her knee. > They have explained some people with auto immune problems can get these tho > the docs themselves have never actually seen it. > They have put her on 60mg of prednisone(raised from 5mg per day, she was > weaning off) She will be at the 60mg level for 4 days. And a couple other > drugs and creams for it. > I am wondering if any of you have suffered with this as the doctors have > never seen it except in the medical books. > Thanks in advance. > Leslie

Response:

you said what I was thinking! I can only IMAGINE what 1 1/2 shots of whiskey would do to my CD <shudder>! Reesie : )

– Hide quoted text — Show quoted text -> Jeff – please be very careful when mixing narcotics with alcohol. > Actually, you shouldn’t be mixing the two together at all! Dangerous thing > to do. > started in november last year….started to heal and was not sore, just > open > wound size of a dime…now is red, sore, deep and is bigger that a > quarter. > it is raised about 1/4 of an inch! swollen!….taking 1 and 1/2 times > dose > of narcotics and still in pain… :-( using whiskey too…to inhance…. > jeff ~ feel’in looped most of the time…. hee, hee been > > suffering with it for MONTHS…..how long exactly???? : ) Reesie > > > thanks susan…….THAT’S ME!!! > > > jeff > > > > Here is a link about this that might be of interest. I don’t even > have > > it > > > > and found it interesting since this is another freebie thanks to > > Crohn’s. > > > > UM MOM Susan > > > > http://www.emedicine.com/derm/topic367.htm > > > > > Hi, > > > > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > > > > diagnosed > > > > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > > > looking > > > > > ulcer on her knee. > > > > > They have explained some people with auto immune problems can get > > these > > > > tho > > > > > the docs themselves have never actually seen it. > > > > > They have put her on 60mg of prednisone(raised from 5mg per day, > she > > was > > > > > weaning off) She will be at the 60mg level for 4 days. And a > couple > > > other > > > > > drugs and creams for it. > > > > > I am wondering if any of you have suffered with this as the > doctors > > have > > > > > never seen it except in the medical books. > > > > > Thanks in advance. > > > > > Leslie

Response:

jeff, please be very carefull, when mixing narcotics with alcohol! I never done mixing alcohol with narcotics…the only I can tell you is once my best friend was having her birthday party….to make the story short , we went to a bar and other friends, but before I had to take some medecine we had to much drink, I didn’t get drunk, first thing I woke up was we had to rush to ER, I had an ulcer in the stomach which I didn’t know about it.. Take Care Tania – Hide quoted text — Show quoted text – > Jeff – please be very careful when mixing narcotics with alcohol. > Actually, you shouldn’t be mixing the two together at all! Dangerous thing > to do. > started in november last year….started to heal and was not sore, just > open > wound size of a dime…now is red, sore, deep and is bigger that a > quarter. > it is raised about 1/4 of an inch! swollen!….taking 1 and 1/2 times > dose > of narcotics and still in pain… :-( using whiskey too…to inhance…. > jeff ~ feel’in looped most of the time…. hee, hee > > suffering with it for MONTHS…..how long exactly???? : ) Reesie > > > thanks susan…….THAT’S ME!!! > > > jeff > > > > Here is a link about this that might be of interest. I don’t even > have > > it > > > > and found it interesting since this is another freebie thanks to > > Crohn’s. > > > > UM MOM Susan > > > > http://www.emedicine.com/derm/topic367.htm > > > > > Hi, > > > > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > > > > diagnosed > > > > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > > > looking > > > > > ulcer on her knee. > > > > > They have explained some people with auto immune problems can get > > these > > > > tho > > > > > the docs themselves have never actually seen it. > > > > > They have put her on 60mg of prednisone(raised from 5mg per day, > she > > was > > > > > weaning off) She will be at the 60mg level for 4 days. And a > couple > > > other > > > > > drugs and creams for it. > > > > > I am wondering if any of you have suffered with this as the > doctors > > have > > > > > never seen it except in the medical books. > > > > > Thanks in advance. > > > > > Leslie

Response:

> Hi, > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking > ulcer on her knee. > They have explained some people with auto immune problems can get these tho > the docs themselves have never actually seen it. > They have put her on 60mg of prednisone(raised from 5mg per day, she was > weaning off) She will be at the 60mg level for 4 days. And a couple other > drugs and creams for it. > I am wondering if any of you have suffered with this as the doctors have > never seen it except in the medical books.

If I were you I would look into the link recently made .. genetically .. to the problem of iron excess. Here is an article which speak to the link. The genetic link has shown colitis , multiple sclerosis and iron overload to be closely linked. The url provided is for a patent for a MS treatment which coincidentally? is a treatment which uses one what seems to be the most powerful natural iron chelator available in any health food store. Rev Med Interne 1997;18(2):132-7 [Systemic manifestations of hemorrhagic rectocolitis: apropos of a case of hemorrhagic rectocolitis associated with multiple sclerosis]. [Article in French] Alric L, Laroche M, Faucheux JM, Bonnet E, Massip P, Duffaut M Service de medecine interne, CHU Rangueil, Toulouse, France. Extra-intestinal manifestations of inflammatory bowel diseases are frequent and numerous. We report a case of ulcerative colitis associated with multiple sclerosis, ankylosing spondylitis and pyoderma gangrenosum. This observation shows the rare association of ulcerative colitis-multiple sclerosis, and extra-intestinal manifestations of inflammatory colitis are discussed. Publication Types: * Review * Review of reported cases PMID: 9092032, UI: 97227019 Save the above report in [Macintosh] [Text] format Order documents on this page through Loansome Doc http://www.nucleus.com/watchman/ms.html Who loves ya. Tom — Jesus was a Vegetarian! http://www.nucleus.com/watchman Moses was a Mystic! http://www.nucleus.com/watchman/light.html

Response:

Ouch!!! I really hope your Remicade treatment will help you get rid of this nasty stuff. It looks awfully painfull. Take care Noella – Hide quoted text — Show quoted text -> thanks susan…….THAT’S ME!!! > jeff > Here is a link about this that might be of interest. I don’t even have it > and found it interesting since this is another freebie thanks to Crohn’s. > UM MOM Susan > http://www.emedicine.com/derm/topic367.htm > > Hi, > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > diagnosed > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > looking > > ulcer on her knee. > > They have explained some people with auto immune problems can get these > tho > > the docs themselves have never actually seen it. > > They have put her on 60mg of prednisone(raised from 5mg per day, she was > > weaning off) She will be at the 60mg level for 4 days. And a couple > other > > drugs and creams for it. > > I am wondering if any of you have suffered with this as the doctors have > > never seen it except in the medical books. > > Thanks in advance. > > Leslie

Response:

Jeff – please be very careful when mixing narcotics with alcohol. Actually, you shouldn’t be mixing the two together at all! Dangerous thing to do. – Hide quoted text — Show quoted text -> started in november last year….started to heal and was not sore, just open > wound size of a dime…now is red, sore, deep and is bigger that a quarter. > it is raised about 1/4 of an inch! swollen!….taking 1 and 1/2 times dose > of narcotics and still in pain… :-( using whiskey too…to inhance…. > jeff ~ feel’in looped most of the time…. hee, hee > suffering with it for MONTHS…..how long exactly???? : ) Reesie > > thanks susan…….THAT’S ME!!! > > jeff > > > Here is a link about this that might be of interest. I don’t even > have > it > > > and found it interesting since this is another freebie thanks to > Crohn’s. > > > UM MOM Susan > > > http://www.emedicine.com/derm/topic367.htm > > > > Hi, > > > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > > > diagnosed > > > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > > looking > > > > ulcer on her knee. > > > > They have explained some people with auto immune problems can get > these > > > tho > > > > the docs themselves have never actually seen it. > > > > They have put her on 60mg of prednisone(raised from 5mg per day, she > was > > > > weaning off) She will be at the 60mg level for 4 days. And a couple > > other > > > > drugs and creams for it. > > > > I am wondering if any of you have suffered with this as the doctors > have > > > > never seen it except in the medical books. > > > > Thanks in advance. > > > > Leslie

Response:

— Take Care, Sherry :o) started in november last year….started to heal and was not sore, just open wound size of a dime…now is red, sore, deep and is bigger that a quarter. it is raised about 1/4 of an inch! swollen!….taking 1 and 1/2 times dose of narcotics and still in pain… :-( using whiskey too…to inhance…. jeff ~ feel’in looped most of the time…. hee, hee

– Hide quoted text — Show quoted text – > suffering with it for MONTHS…..how long exactly???? : ) Reesie > thanks susan…….THAT’S ME!!! > jeff > > Here is a link about this that might be of interest. I don’t even have > it > > and found it interesting since this is another freebie thanks to > Crohn’s. > > UM MOM Susan > > http://www.emedicine.com/derm/topic367.htm > > > Hi, > > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > > diagnosed > > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > looking > > > ulcer on her knee. > > > They have explained some people with auto immune problems can get > these > > tho > > > the docs themselves have never actually seen it. > > > They have put her on 60mg of prednisone(raised from 5mg per day, she > was > > > weaning off) She will be at the 60mg level for 4 days. And a couple > other > > > drugs and creams for it. > > > I am wondering if any of you have suffered with this as the doctors > have > > > never seen it except in the medical books. > > > Thanks in advance. > > > Leslie

— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

OMG!!!! Now we all know why Jeff is in so darn much pain!!!!!! — Take Care, Sherry :o)

I found it and when I posted it was afraid you may have seen it. After hearing that this is another little surprise crohn’s can give me I looked it up so I would know it if I got it. After looking a the disgusting pictures I hope this is something that loses my name. UM MOM Susan – Hide quoted text — Show quoted text -> thanks susan…….THAT’S ME!!! > jeff > Here is a link about this that might be of interest. I don’t even have it > and found it interesting since this is another freebie thanks to Crohn’s. > UM MOM Susan > http://www.emedicine.com/derm/topic367.htm > > Hi, > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > diagnosed > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > looking > > ulcer on her knee. > > They have explained some people with auto immune problems can get these > tho > > the docs themselves have never actually seen it. > > They have put her on 60mg of prednisone(raised from 5mg per day, she was > > weaning off) She will be at the 60mg level for 4 days. And a couple > other > > drugs and creams for it. > > I am wondering if any of you have suffered with this as the doctors have > > never seen it except in the medical books. > > Thanks in advance. > > Leslie

— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

started in november last year….started to heal and was not sore, just open wound size of a dime…now is red, sore, deep and is bigger that a quarter. it is raised about 1/4 of an inch! swollen!….taking 1 and 1/2 times dose of narcotics and still in pain… :-( using whiskey too…to inhance…. jeff ~ feel’in looped most of the time…. hee, hee

Response:

suffering with it for MONTHS…..how long exactly???? : ) Reesie – Hide quoted text — Show quoted text -> thanks susan…….THAT’S ME!!! > jeff > Here is a link about this that might be of interest. I don’t even have it > and found it interesting since this is another freebie thanks to Crohn’s. > UM MOM Susan > http://www.emedicine.com/derm/topic367.htm > > Hi, > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > diagnosed > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > looking > > ulcer on her knee. > > They have explained some people with auto immune problems can get these > tho > > the docs themselves have never actually seen it. > > They have put her on 60mg of prednisone(raised from 5mg per day, she was > > weaning off) She will be at the 60mg level for 4 days. And a couple > other > > drugs and creams for it. > > I am wondering if any of you have suffered with this as the doctors have > > never seen it except in the medical books. > > Thanks in advance. > > Leslie

Response:

hear you on that. if it is any consolation, only 5% of crohnies get it. as you can see, there are many reasons to get it, even just bumping your leg. i have researched every site on the net for this, this is similar to others i have seen. jeff ~~in pain!

– Hide quoted text — Show quoted text -> I found it and when I posted it was afraid you may have seen it. After > hearing that this is another little surprise crohn’s can give me I looked it > up so I would know it if I got it. After looking a the disgusting pictures > I hope this is something that loses my name. UM MOM Susan > thanks susan…….THAT’S ME!!! > jeff > > Here is a link about this that might be of interest. I don’t even have > it > > and found it interesting since this is another freebie thanks to > Crohn’s. > > UM MOM Susan > > http://www.emedicine.com/derm/topic367.htm > > > Hi, > > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > > diagnosed > > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > looking > > > ulcer on her knee. > > > They have explained some people with auto immune problems can get > these > > tho > > > the docs themselves have never actually seen it. > > > They have put her on 60mg of prednisone(raised from 5mg per day, she > was > > > weaning off) She will be at the 60mg level for 4 days. And a couple > other > > > drugs and creams for it. > > > I am wondering if any of you have suffered with this as the doctors > have > > > never seen it except in the medical books. > > > Thanks in advance. > > > Leslie

Response:

yeah, your experience is the usual course. i am in my second on my other leg now. it does not know when to quit…it re-ulcerated and based on age and risk to my liver, doc does not want to do the pred/cyclo thing. we got remicade scheduled in one week. she is confident it will stymie the flare. i forgot to ask them about the shot…if i end up in er this weekend (it is getting worse and worse by the hour), i will have them shot me…er. i mean "it". jeff, cd class of o1

– Hide quoted text — Show quoted text -> I’m sorry to hear your daugther has to suffer though this. It is a > horrid looking condition and needs to be treated quickly. > I’ve had it on my ankles twice. The first time I let it go for quite > awhile not knowing what it was and thinking it would clear up on its > own…then it started ulcerating. My doc had seen it before but was > rather surprised saying it was fairly rare. He did call in a bunch of > residents/med students to admire my festering ankle > Both times treatment was oral prednisone of I think somewhere around > 35-50mg/day, as well as injections of prednisone/steroid like > substance right at the location of the ulcer. The injections were a > one time deal and healing started very quickly in 1-2 days. Other than > that it was basic care of anti-bacterial cream and keeping it > bandaged. > Best of luck, > John Connor >Hi, >My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed >with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking >ulcer on her knee. >They have explained some people with auto immune problems can get these tho >the docs themselves have never actually seen it. >They have put her on 60mg of prednisone(raised from 5mg per day, she was >weaning off) She will be at the 60mg level for 4 days. And a couple other >drugs and creams for it. >I am wondering if any of you have suffered with this as the doctors have >never seen it except in the medical books. >Thanks in advance. >Leslie

Response:

thanks susan…….THAT’S ME!!! jeff

– Hide quoted text — Show quoted text -> Here is a link about this that might be of interest. I don’t even have it > and found it interesting since this is another freebie thanks to Crohn’s. > UM MOM Susan > http://www.emedicine.com/derm/topic367.htm > Hi, > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > diagnosed > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking > ulcer on her knee. > They have explained some people with auto immune problems can get these > tho > the docs themselves have never actually seen it. > They have put her on 60mg of prednisone(raised from 5mg per day, she was > weaning off) She will be at the 60mg level for 4 days. And a couple other > drugs and creams for it. > I am wondering if any of you have suffered with this as the doctors have > never seen it except in the medical books. > Thanks in advance. > Leslie

Response:

Susan, thanks for the info! Take Care Tania – Hide quoted text — Show quoted text – > Here is a link about this that might be of interest. I don’t even have it > and found it interesting since this is another freebie thanks to Crohn’s. > UM MOM Susan > http://www.emedicine.com/derm/topic367.htm > Hi, > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > diagnosed > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking > ulcer on her knee. > They have explained some people with auto immune problems can get these > tho > the docs themselves have never actually seen it. > They have put her on 60mg of prednisone(raised from 5mg per day, she was > weaning off) She will be at the 60mg level for 4 days. And a couple other > drugs and creams for it. > I am wondering if any of you have suffered with this as the doctors have > never seen it except in the medical books. > Thanks in advance. > Leslie

Response:

I’m sorry to hear your daugther has to suffer though this. It is a horrid looking condition and needs to be treated quickly. I’ve had it on my ankles twice. The first time I let it go for quite awhile not knowing what it was and thinking it would clear up on its own…then it started ulcerating. My doc had seen it before but was rather surprised saying it was fairly rare. He did call in a bunch of residents/med students to admire my festering ankle Both times treatment was oral prednisone of I think somewhere around 35-50mg/day, as well as injections of prednisone/steroid like substance right at the location of the ulcer. The injections were a one time deal and healing started very quickly in 1-2 days. Other than that it was basic care of anti-bacterial cream and keeping it bandaged. Best of luck, John Connor – Hide quoted text — Show quoted text ->Hi, >My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed >with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking >ulcer on her knee. >They have explained some people with auto immune problems can get these tho >the docs themselves have never actually seen it. >They have put her on 60mg of prednisone(raised from 5mg per day, she was >weaning off) She will be at the 60mg level for 4 days. And a couple other >drugs and creams for it. >I am wondering if any of you have suffered with this as the doctors have >never seen it except in the medical books. >Thanks in advance. >Leslie

Response:

Here is a link about this that might be of interest. I don’t even have it and found it interesting since this is another freebie thanks to Crohn’s. UM MOM Susan http://www.emedicine.com/derm/topic367.htm – Hide quoted text — Show quoted text -> Hi, > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking > ulcer on her knee. > They have explained some people with auto immune problems can get these tho > the docs themselves have never actually seen it. > They have put her on 60mg of prednisone(raised from 5mg per day, she was > weaning off) She will be at the 60mg level for 4 days. And a couple other > drugs and creams for it. > I am wondering if any of you have suffered with this as the doctors have > never seen it except in the medical books. > Thanks in advance. > Leslie

Response:

i emailed you my thoughts tania. about 5% of crohn’s sufferers get p.g. jeff, cd class of o1 – Hide quoted text — Show quoted text -> Leslie, > I was diagnosed with it this morning, it’s right beside my (L) ankle…after a > few weeks of ignoring and poking it most of the time….I was given > antibiotics Pennicillin and a cream to put on it, for the next week or so! I > was told by the dr at the clinic most people with CD might get something like > that…..Take Care Tania > Hi, > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking > ulcer on her knee. > They have explained some people with auto immune problems can get these tho > the docs themselves have never actually seen it. > They have put her on 60mg of prednisone(raised from 5mg per day, she was > weaning off) She will be at the 60mg level for 4 days. And a couple other > drugs and creams for it. > I am wondering if any of you have suffered with this as the doctors have > never seen it except in the medical books. > Thanks in advance. > Leslie

Response:

Hi, My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking ulcer on her knee. They have explained some people with auto immune problems can get these tho the docs themselves have never actually seen it. They have put her on 60mg of prednisone(raised from 5mg per day, she was weaning off) She will be at the 60mg level for 4 days. And a couple other drugs and creams for it. I am wondering if any of you have suffered with this as the doctors have never seen it except in the medical books. Thanks in advance. Leslie

Response:

Tania, I was just changing the bandage on my daughter and it does look significantly better than even just a few days ago. The doctor told me antibiotics would only have effect if there was an infection in it, is yours infected? I also understand they can be extremely painful, it looks like it would hurt like heck. We are in a way lucky as my daughter is a parapelgic, so she has no pain at all even with the crohns which they have not been able to get under control. We thought it was going in remission but after only 3 weeks it came back tho not nearly as bad as she is not in the hospital this time. Thanks for listening and letting me know someone out there knows what this is : ) Leslie – Hide quoted text — Show quoted text -> Leslie, > I was diagnosed with it this morning, it’s right beside my (L) ankle…after a > few weeks of ignoring and poking it most of the time….I was given > antibiotics Pennicillin and a cream to put on it, for the next week or so! I > was told by the dr at the clinic most people with CD might get something like > that…..Take Care Tania > Hi, > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been diagnosed > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid looking > ulcer on her knee. > They have explained some people with auto immune problems can get these tho > the docs themselves have never actually seen it. > They have put her on 60mg of prednisone(raised from 5mg per day, she was > weaning off) She will be at the 60mg level for 4 days. And a couple other > drugs and creams for it. > I am wondering if any of you have suffered with this as the doctors have > never seen it except in the medical books. > Thanks in advance. > Leslie

Response:

Leslie, it is infected, because I was poking it with a thin needle on and off for 2-3 weeks, to see why there was so much pain…..right now it does hurt a lot..because I’ve been walking around running errands etc..the dr told me to stay off of it for awhile until it heals….it’s hard! You’ll find a lot of supporting people and were all like a big family, if you any questions at all you can post them, someone will answer your questions, if you feel frustrated and you need to vent, please post etc… ..I was diagnosed with Crohn’s in 1995 and even sometimes now it can be a very cruel disease….Always keep hope, everything will be fine…You’re Welcome Take Care Tania – Hide quoted text — Show quoted text – > Tania, > I was just changing the bandage on my daughter and it does look > significantly better than even just a few days ago. > The doctor told me antibiotics would only have effect if there was an > infection in it, is yours infected? > I also understand they can be extremely painful, it looks like it would hurt > like heck. We are in a way lucky as my daughter is a parapelgic, so she has > no pain at all even with the crohns which they have not been able to get > under control. We thought it was going in remission but after only 3 weeks > it came back tho not nearly as bad as she is not in the hospital this time. > Thanks for listening and letting me know someone out there knows what this > is : ) > Leslie > Leslie, > I was diagnosed with it this morning, it’s right beside my (L) > ankle…after a > few weeks of ignoring and poking it most of the time….I was given > antibiotics Pennicillin and a cream to put on it, for the next week or so! > I > was told by the dr at the clinic most people with CD might get something > like > that…..Take Care Tania > > Hi, > > My 13 yr. old daughter (diagnosed crohns Nov. 2001) has just been > diagnosed > > with Pyoderma Gangrenosum, forgive the spelling. This is a horrid > looking > > ulcer on her knee. > > They have explained some people with auto immune problems can get these > tho > > the docs themselves have never actually seen it. > > They have put her on 60mg of prednisone(raised from 5mg per day, she was > > weaning off) She will be at the 60mg level for 4 days. And a couple > other > > drugs and creams for it. > > I am wondering if any of you have suffered with this as the doctors have > > never seen it except in the medical books. > > Thanks in advance. > > Leslie

Response:

I have a friend who is suffering this disease at the moment. It’s quite a difficult problem associated with CD and out of my league and I was wondering if there was anyone in the support group that had experienced this awful side effect ( for want of a better description) John H(I)

Response:

According to the page I read about pyoderma is it will mirror the CD. CD acts up it acts up. Mike >I have a friend who is suffering this disease at the moment. It’s quite a >difficult problem associated with CD and out of my league and I was >wondering if there was anyone in the support group that had experienced this >awful side effect ( for want of a better description) >John H(I)

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Ulcerative Colitis

Pyoderma Gangrenosum

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