I'm new…with questions

Question:

kelly, hi and welcome .i also have crohns in the rectal/ anal area. so i think i may know the pain you are talking about. here’s what helps me with pain… baths,(sometimes 5 or more a day for me), hot pads, going to bed and sleep if i can, stool softener OTC docusate sodium i take 1 in AM &2 in Pm. as far as pain meds that help: B&O suppositories (belladonna & opium) work well if i am not too raw rectally.oxycontin sometimes i take it before using the B&O it helps not to be quite so painful to insert supp.and the combo when things are bad still doesn’t take the pain away, but makes it bearable.i then up the dose of stool softener because the oxy. is constipating ! i hope some of this is helpful in your search for relief. sorry to hear of your pain. keep asking for help and let us know what you find out from your dr. carol

Response:

Alas, I’m not quite sure how to quote here, so I’ll cut and paste until someone enlightens me. I’m not sure if I should use html tags or what! "Re: I’m new…with questions Just wanted to post something you reminded me of. I was originally diagnosed by my colo-rectal surgeon. My GI wasn’t so certain, everyone of the standard tests came back normal. My colonoscopy showed nothing, and my upper and lower gi series came back clean too. I remember my surgeon saying "Well if this isn’t crohn’s it’s sure a pretty good imatation." Eventually my GI got onboard with the diagnosis of crohn’s, espcially since my fistula did not respond to surgery. As far as I know a fistula is a crohn’s defining event, the only other cause for them can be injury, some woman will develop one after a difficult birth, but that is very rare. In a sense having crohn’s limited to per-rectal involvement is better than having it more wide spread throughout the gut. However as I’m sure you’ve learned Kelly fistulas are very difficult treat. almost 3 years later despite surgery and several medical protocols my fistula has not healed up, however due to the surgery what was once extremely painful is now really just a big bother, my other crohn’s symptons I’m able to manage with lomotil and tylenol 3. Best of luck to you Kelly, by all means feel free to email if you like if you want to discuss the "wonderful world" of limited crohn’s. Brian ( a man who now buys 4×4 guaze pads wholesale!) BTW something that has helped me a lot is eating a diet high in fibre and low in simple carbs, also I take a dose of metamucil before I go to bed, your doctor is right, a bulkier stool will go a long way in helping you feel more comfortable." Brian, this sounds so much like me! So far I haven’t been told that this is CD, but it sure sounds like it. You know, my fistula has actually healed now. The scar is sensitive, but I’m thankful that’s it. After enduring those agonizing packing sessions twice dailty for so long, I’m incredibly grateful. The source of my pain seems to stem from the anus itself…in the colonoscopy, my doctor did say that he saw a tiny tear, but nothing he wanted to touch surgically. I’m not sure if that’s the source of the pain…it almost feels like the entire rectal area is in an awful spasm, and feels like sitting on a knife. The Cholestramine (or whatever the name is!) is starting to do it’s job..everything is bulking up. This is the first time in almost a year that I’ve had a semi-solid stool. The things that you get excited about! LOL I was a little disappointed that it still hurts me considerably though. As I type, I’m on pain medication. Sitz baths work, but I’d have to live in the bathtub, and that’s just not feasable. My husband, as supportive as he is, is getting frustrated right along with me. The intimacy in our marriage has suffered greatly. I’m lucky he was so gung-ho about the gross packing sessions…he’s an eye doctor, and the first time he packed me, he declared, "I feel like a REAL doctor!" LOL Good thing he enjoys stuff like that. The beanbag heating pad thing someone suggested sounds divine, I’m going to look for that first thing the next time I hit WalMart. I used the Anamantle cream that my doc RX’d before the Proctocreme (I just realized it’s just hydrocortisone…the Anamantle is hydrocortisone with Lidocaine). I couldn’t use the Anamantle before b/c you had to insert it in the rectum. No way, no how. I simply can’t stand the pain. I’m using it externally now, and it gives a little relief. Thanks everyone for sharing your stories, it really gives me hope that I’ll finally get a diagnosis, and get my symptoms under control. I’m truly touched at the support here, and I look forward to reading a ton more! Kelly

Response:

> Annie, > I know several people with CD with just anal involvement. Usually, when this is surgically treated _PROPERLY_ the patient can go into a life-long remission. That is the good news part of the dx. > mgbio

interesting…whats great about this board(among other things) is acquiring knowledge about ibd..thanks for the info annie

Response:

Hey Kelly, I have also had fistula problems and I had a fistulotomy and a fistulectomy. The best thing I have ever purchased for crohns or anal pain was a "Magic Bag". I got it from the drugstore and it is a beanbag thingy… you put it in the microwave for 2 or 3 minutes and it retains it’s heat for 20 or so minutes. (There are probably other brand names.) It feels soooo good on the butt! It doesn’t exactly get rid of pain, especially since it appears that your pain is very severe, but it might help. Helps with the pain that comes with cramping too. I’m sure that you can find one anywhere- Walmart maybe. Good luck with everything. It’s tough when you are feeling crappy and you don’t really have the answers why. Marina – Hide quoted text — Show quoted text -> Oh wow! I wasn’t expecting such a response. I’m very glad that I posted > here. I’ll grab a few quotes from here and there to answer: > "Kelly it sounds like you and have much the same story. The technical > term > is "crohn’s limited to peri-rectal involvement", I too have a history of > fissures and have a fistula now for several years. What has your doctor > advised regarding treatment? > Brian" > Thank you for the term, I’m going to do more research on that. My doctor > as of now wants me to take the cholesterol-lowering (aka stool-bulking) > med…I believe the name of it is something like Cholestramine. (I know > nothing about these meds…I was a nurse in the nursery!) He’s also got > me on ProctoCream. I go back in a few weeks to see if this will settle > down my bowel movements, thus reducing the irritation to my anus causing > the pain. > "from what i understand > it’s rare for someone without crohns or colitis to have > more than one or two fistulas in a short period of time" > The way I’ve been told, this was one fistula. I had to have the five > surgeries before it cleared up. The first 4 surgeries were by a general > surgeon…I’m not sure if he botched me up or what, but when I saw the > colorectal surgeon in ATL, it only took one time for him to get it right. > The way he tells me, this is a simple surgery. That tells him that > there’s something else going on with me, leading him to think I may have > Crohn’s. > "it sounds as if it could be crohns altho i have never heard of it only > in the anus…that sounds like uc..if u arent sure of what the doctors > are saying or u arent comfortable then get another opinion.." > My doc said it is only in 3% of Crohn’s patients. He also gave me another > interesting percentage. He told me that he could take a biopsy from a > KNOWN Crohn’s patient and send it to the lab, and it would only show up as > being Crohn’s 17% of the time. When he did my colonoscopy, he said it was > so incredibly healthy he didn’t even take a biopsy. (he had sent biopsies > of my anal region after my fistulectomy and it came back negative). I > truly trust this doctor…he’s not jumping to any conclusions, and he’s > very methodical. As well, my mother works as a nurse in the OR at > Crawford Long and Emory with him, and everyone there says that he is the > "best." I certainly hope so. So far he seems very determined to figure > me out. :) > I do have another question…for those who have problems with their anal > regions, how is your pain controlled? Just tonight I had to ride in the > Jazzy chair at Walmart, feeling like a total fool. The past two days have > been very bad, and very painful. Most days aren’t as bad as this, though > I do hurt every day. You can probably see that the pain meds are keeping > me up and making me ramble on in this post…I apologize if I put you to > sleep! Thanks for all the wonderful replies (and emails). What a kind > group of people! > Kelly

Response:

Annie, I know several people with CD with just anal involvement. Usually, when this is surgically treated _PROPERLY_ the patient can go into a life-long remission. That is the good news part of the dx. mgbio – Hide quoted text — Show quoted text ->Hi, I’ve been doing some research and came across this board, very >helpful! >I am not sure that I have Crohn’s, I’ll give a little background: Since >August of last year, I’ve had 5 surgeries to fix a perirectal abscess. >After the fourth fistulectomy (a large hole that I had to have someone >pack twice daily) I finally went to a Colorectal surgeon in Atlanta. He >did the fifth surgery, and it was a success. In addition to the fistula, >I have had a lot of diarrhea and SEVERE pain in the anal region that seems >unrelated to the surgical procedures, as well as bleeding. I have >anywhere from 3-5 bowel movements per day. >I have just been a bundle of nerves wanting to find out what is wrong with >me, as I cannot sit or walk properly for hours after a bowel movement. I >seem to live in the bathroom, either on the toilet, or in the bathtub >trying to get relief. I have been on pain medication ever since August, >and as a nurse (no longer working) I know how bad that is. I had a small >bowel series (normal) and then a colonoscopy. I burst out crying when I >found out it was normal. I so want to know what is wrong. My doctor >mentioned that 3% of Crohn’s patients only have symptoms in the >rectum/anus region, and seems to think that MAY be what I have going on. >(I am about to turn 27, a late diagnosis for Crohn’s if I understand >correctly). The meds I’ve just been given are a cholesterol lowering >medication, which we’re using for the stool-bulking side effects, and a >cream to help soften the scar tissue by my anus. >I’m not even sure what I’m trying to ask. Does this sound like Crohn’s? >Does anyone here only have Crohn’s in the anus? I’m sure you all can >understand my anxiety in wanting to find my problem, as I can then work >towards getting "normal" or as close to it as possible. Any insight or >comments would be very much appreciated. >Kelly > hi kelly > welcome to the group.. > first…i was dx with uc at age 30 and crohns colitis at 33 so 27 isnt > late.. > it sounds as if it could be crohns altho i have never heard of it only > in the anus…that sounds like uc..if u arent sure of what the doctors > are saying or u arent comfortable then get another opinion.. > and remember that probably no two people with ibd are exactly alike in > symptoms etc…i hope u get some decent answers soon so u can start > some kind of treatment that really helps… > take care..annie

Response:

> Don’t be afraid to get a second opinion from an IBD specialist. IBD is

extremely hard to diagnose and people can go years without a proper diagnosis. MAN! Once you get that second opinion you will feel great. That is, confident that you did the right thing. I feel if your current doc can not tolerate a second opinion then there is something their that you should be skeptical or cynical about. My GI sent me to a competing health organization here in Pittsburgh PA to see if he missed something obvious. The results made en feel great and confident in his treatment. Besides the competing GI came to similar conclusions and found nothing that was missed. Paul Pinyot.

Response:

You can’t always trust the CCFA list of affiliated doctors. My first GI was on that list and he completely missed the diagnosis due to his huge ego. I often had refracted pain with my stricture, that is having pain in one physical location yet feeling it in another; this is not uncommon. mgbio – Hide quoted text — Show quoted text – > hey Kelly, I was diagnosed with crohns about three years ago > after i had two fistulas removed. from what i understand > it’s rare for someone without crohns or colitis to have > more than one or two fistulas in a short period of time, > but then again my doctor hacked me up twice and didn’t > mention that it might be crohns, so it is possible, > or my doctor is just completly incompitent. i wish i > could give you a straight forward answer, but that’s > the best i can do. > my crohns is in my ilium, but that’s usually the last place > i get cramps in. it’s usually on my left side and in my > rectum like you described, but i’m not sure if anyone > else has these symptoms(does anyone else get cramps > like this, in areas where they dont have crohns?) > if you ask me it does sound like you have crohns > or colitis, but i didn’t stay at a holiday inn > last night so… it would probably be best to > get a second opinion. you can go to the crohns and > colitis foundation of america web site and get a > list of doctors that are members with them. the web site is > www.ccfa.org if you havnt already found it. > i hope this helps, and that your condition improves. > Best Wishes, Ruger.

Response:

Ruger, I can get pain in a flair anywhere and when I was first sick all the pain was on my left side with the crohn’s on the right, so yes pain does travel and is not a good indicator for where the disease really is. UM MOM Susan

– Hide quoted text — Show quoted text -> hey Kelly, I was diagnosed with crohns about three years ago > after i had two fistulas removed. from what i understand > it’s rare for someone without crohns or colitis to have > more than one or two fistulas in a short period of time, > but then again my doctor hacked me up twice and didn’t > mention that it might be crohns, so it is possible, > or my doctor is just completly incompitent. i wish i > could give you a straight forward answer, but that’s > the best i can do. > my crohns is in my ilium, but that’s usually the last place > i get cramps in. it’s usually on my left side and in my > rectum like you described, but i’m not sure if anyone > else has these symptoms(does anyone else get cramps > like this, in areas where they dont have crohns?) > if you ask me it does sound like you have crohns > or colitis, but i didn’t stay at a holiday inn > last night so… it would probably be best to > get a second opinion. you can go to the crohns and > colitis foundation of america web site and get a > list of doctors that are members with them. the web site is > www.ccfa.org if you havnt already found it. > i hope this helps, and that your condition improves. > Best Wishes, Ruger.

Response:

People have given some really good information here, so I’ll just add two more bits: Keep in mind how age ranges for disease diagnoses are determined. Essentially, its done my looking at the frequency of diagnosis for each age class. They look at the distribution and where the majority of the occurances occur and that is what they say the typical age is for diagnosis. That doesn’t mean that there aren’t records of diagnosis occuring outside of that age range – it just means that its less probable. (For anyone statistics savy, think standard distribution curve, and this will make more sense). The other thing I wanted to say is that you should see a gastroenterologist. A good colon surgeon will see signs of inflammatory bowel disease, but a gastroenterologist is going to be better at doing the sleuth work that is often comes with the hard cases. You will also need a gastroenterologist for long-term treatment. Sorry that you are feeling bad. Hope that you find some answers and relief soon! Mare

Response:

Just wanted to post something you reminded me of. I was originally diagnosed by my colo-rectal surgeon. My GI wasn’t so certain, everyone of the standard tests came back normal. My colonoscopy showed nothing, and my upper and lower gi series came back clean too. I remember my surgeon saying "Well if this isn’t crohn’s it’s sure a pretty good imatation." Eventually my GI got onboard with the diagnosis of crohn’s, espcially since my fistula did not respond to surgery. As far as I know a fistula is a crohn’s defining event, the only other cause for them can be injury, some woman will develop one after a difficult birth, but that is very rare. In a sense having crohn’s limited to per-rectal involvement is better than having it more wide spread throughout the gut. However as I’m sure you’ve learned Kelly fistulas are very difficult treat. almost 3 years later despite surgery and several medical protocols my fistula has not healed up, however due to the surgery what was once extremely painful is now really just a big bother, my other crohn’s symptons I’m able to manage with lomotil and tylenol 3. Best of luck to you Kelly, by all means feel free to email if you like if you want to discuss the "wonderful world" of limited crohn’s. Brian ( a man who now buys 4×4 guaze pads wholesale!) BTW something that has helped me a lot is eating a diet high in fibre and low in simple carbs, also I take a dose of metamucil before I go to bed, your doctor is right, a bulkier stool will go a long way in helping you feel more comfortable.

– Hide quoted text — Show quoted text -> People have given some really good information here, so I’ll just add > two more bits: > Keep in mind how age ranges for disease diagnoses are determined. > Essentially, its done my looking at the frequency of diagnosis for > each age class. They look at the distribution and where the majority > of the occurances occur and that is what they say the typical age is > for diagnosis. That doesn’t mean that there aren’t records of > diagnosis occuring outside of that age range – it just means that its > less probable. (For anyone statistics savy, think standard > distribution curve, and this will make more sense). > The other thing I wanted to say is that you should see a > gastroenterologist. A good colon surgeon will see signs of > inflammatory bowel disease, but a gastroenterologist is going to be > better at doing the sleuth work that is often comes with the hard > cases. You will also need a gastroenterologist for long-term > treatment. > Sorry that you are feeling bad. Hope that you find some answers and > relief soon! > Mare

Response:

Hmm, I just posted a long response, but it’s not showing up. If this one posts, I’ll resend the other one. Testing, testing! ;) Kelly

Response:

It showed up just didn’t show your name

– Hide quoted text — Show quoted text -> Hmm, I just posted a long response, but it’s not showing up. If this one > posts, I’ll resend the other one. Testing, testing! ;) > Kelly

Response:

Hi Kelly, It could be crohns don’t give up you’ll get a dx with something sooner or later. It took me over 4 yrs to get dx’d. I was 29 when I finally did. but, if I think back to high school I had some signs of crohns back then too. Good luck I hope you get some relief soon. Take Care, Sherry :o)

– Hide quoted text — Show quoted text -> Hi, I’ve been doing some research and came across this board, very > helpful! > I am not sure that I have Crohn’s, I’ll give a little background: Since > August of last year, I’ve had 5 surgeries to fix a perirectal abscess. > After the fourth fistulectomy (a large hole that I had to have someone > pack twice daily) I finally went to a Colorectal surgeon in Atlanta. He > did the fifth surgery, and it was a success. In addition to the fistula, > I have had a lot of diarrhea and SEVERE pain in the anal region that seems > unrelated to the surgical procedures, as well as bleeding. I have > anywhere from 3-5 bowel movements per day. > I have just been a bundle of nerves wanting to find out what is wrong with > me, as I cannot sit or walk properly for hours after a bowel movement. I > seem to live in the bathroom, either on the toilet, or in the bathtub > trying to get relief. I have been on pain medication ever since August, > and as a nurse (no longer working) I know how bad that is. I had a small > bowel series (normal) and then a colonoscopy. I burst out crying when I > found out it was normal. I so want to know what is wrong. My doctor > mentioned that 3% of Crohn’s patients only have symptoms in the > rectum/anus region, and seems to think that MAY be what I have going on. > (I am about to turn 27, a late diagnosis for Crohn’s if I understand > correctly). The meds I’ve just been given are a cholesterol lowering > medication, which we’re using for the stool-bulking side effects, and a > cream to help soften the scar tissue by my anus. > I’m not even sure what I’m trying to ask. Does this sound like Crohn’s? > Does anyone here only have Crohn’s in the anus? I’m sure you all can > understand my anxiety in wanting to find my problem, as I can then work > towards getting "normal" or as close to it as possible. Any insight or > comments would be very much appreciated. > Kelly

Response:

Oh wow! I wasn’t expecting such a response. I’m very glad that I posted here. I’ll grab a few quotes from here and there to answer: "Kelly it sounds like you and have much the same story. The technical term is "crohn’s limited to peri-rectal involvement", I too have a history of fissures and have a fistula now for several years. What has your doctor advised regarding treatment? Brian" Thank you for the term, I’m going to do more research on that. My doctor as of now wants me to take the cholesterol-lowering (aka stool-bulking) med…I believe the name of it is something like Cholestramine. (I know nothing about these meds…I was a nurse in the nursery!) He’s also got me on ProctoCream. I go back in a few weeks to see if this will settle down my bowel movements, thus reducing the irritation to my anus causing the pain. "from what i understand it’s rare for someone without crohns or colitis to have more than one or two fistulas in a short period of time" The way I’ve been told, this was one fistula. I had to have the five surgeries before it cleared up. The first 4 surgeries were by a general surgeon…I’m not sure if he botched me up or what, but when I saw the colorectal surgeon in ATL, it only took one time for him to get it right. The way he tells me, this is a simple surgery. That tells him that there’s something else going on with me, leading him to think I may have Crohn’s. "it sounds as if it could be crohns altho i have never heard of it only in the anus…that sounds like uc..if u arent sure of what the doctors are saying or u arent comfortable then get another opinion.." My doc said it is only in 3% of Crohn’s patients. He also gave me another interesting percentage. He told me that he could take a biopsy from a KNOWN Crohn’s patient and send it to the lab, and it would only show up as being Crohn’s 17% of the time. When he did my colonoscopy, he said it was so incredibly healthy he didn’t even take a biopsy. (he had sent biopsies of my anal region after my fistulectomy and it came back negative). I truly trust this doctor…he’s not jumping to any conclusions, and he’s very methodical. As well, my mother works as a nurse in the OR at Crawford Long and Emory with him, and everyone there says that he is the "best." I certainly hope so. So far he seems very determined to figure me out. :) I do have another question…for those who have problems with their anal regions, how is your pain controlled? Just tonight I had to ride in the Jazzy chair at Walmart, feeling like a total fool. The past two days have been very bad, and very painful. Most days aren’t as bad as this, though I do hurt every day. You can probably see that the pain meds are keeping me up and making me ramble on in this post…I apologize if I put you to sleep! Thanks for all the wonderful replies (and emails). What a kind group of people! Kelly

Response:

- Hide quoted text — Show quoted text – > Hi, I’ve been doing some research and came across this board, very > helpful! > I am not sure that I have Crohn’s, I’ll give a little background: Since > August of last year, I’ve had 5 surgeries to fix a perirectal abscess. > After the fourth fistulectomy (a large hole that I had to have someone > pack twice daily) I finally went to a Colorectal surgeon in Atlanta. He > did the fifth surgery, and it was a success. In addition to the fistula, > I have had a lot of diarrhea and SEVERE pain in the anal region that seems > unrelated to the surgical procedures, as well as bleeding. I have > anywhere from 3-5 bowel movements per day. > I have just been a bundle of nerves wanting to find out what is wrong with > me, as I cannot sit or walk properly for hours after a bowel movement. I > seem to live in the bathroom, either on the toilet, or in the bathtub > trying to get relief. I have been on pain medication ever since August, > and as a nurse (no longer working) I know how bad that is. I had a small > bowel series (normal) and then a colonoscopy. I burst out crying when I > found out it was normal. I so want to know what is wrong. My doctor > mentioned that 3% of Crohn’s patients only have symptoms in the > rectum/anus region, and seems to think that MAY be what I have going on. > (I am about to turn 27, a late diagnosis for Crohn’s if I understand > correctly). The meds I’ve just been given are a cholesterol lowering > medication, which we’re using for the stool-bulking side effects, and a > cream to help soften the scar tissue by my anus. > I’m not even sure what I’m trying to ask. Does this sound like Crohn’s? > Does anyone here only have Crohn’s in the anus? I’m sure you all can > understand my anxiety in wanting to find my problem, as I can then work > towards getting "normal" or as close to it as possible. Any insight or > comments would be very much appreciated. > Kelly

hi kelly welcome to the group.. first…i was dx with uc at age 30 and crohns colitis at 33 so 27 isnt late.. it sounds as if it could be crohns altho i have never heard of it only in the anus…that sounds like uc..if u arent sure of what the doctors are saying or u arent comfortable then get another opinion.. and remember that probably no two people with ibd are exactly alike in symptoms etc…i hope u get some decent answers soon so u can start some kind of treatment that really helps… take care..annie

Response:

hey Kelly, I was diagnosed with crohns about three years ago after i had two fistulas removed. from what i understand it’s rare for someone without crohns or colitis to have more than one or two fistulas in a short period of time, but then again my doctor hacked me up twice and didn’t mention that it might be crohns, so it is possible, or my doctor is just completly incompitent. i wish i could give you a straight forward answer, but that’s the best i can do. my crohns is in my ilium, but that’s usually the last place i get cramps in. it’s usually on my left side and in my rectum like you described, but i’m not sure if anyone else has these symptoms(does anyone else get cramps like this, in areas where they dont have crohns?) if you ask me it does sound like you have crohns or colitis, but i didn’t stay at a holiday inn last night so… it would probably be best to get a second opinion. you can go to the crohns and colitis foundation of america web site and get a list of doctors that are members with them. the web site is www.ccfa.org if you havnt already found it. i hope this helps, and that your condition improves. Best Wishes, Ruger.

Response:

Kelly it sounds like you and have much the same story. The technical term is "crohn’s limited to peri-rectal involvement", I too have a history of fissures and have a fistula now for several years. What has your doctor advised regarding treatment? Brian

Response:

Correction, "15lbs in three weeks." Wasn’t quite as bad as I remember. — Regards, Hans * Remove NOSPAM from address to send directly to me.

– Hide quoted text — Show quoted text -> Hi Kelly, > It definitely sounds like Crohn’s to me, but then again, I’m not a doctor. > I probably had it mildly for about a yr and a half before I had my first > serious flare that made me lose 15lbs in two weeks and put me in the > hospital. I finally got the colonoscopy that I had been trying to get and > was diagnosed with Crohn’s at the age of 28. While I wasn’t exactly > "excited" about being diagnosed with a chronic disease, I have to say it was > a *relief* to finally put a diagnosis on what I had suffered from for a > year. Plus, once they know what it is, they can begin treating it properly. > One thing I learned from my experience is that I put up with waaay too much > from my doctors before I finally got proper treatment (by being admitted to > the hospital, no less! Push, push, push to get them to take your pain > seriously. You don’t deserve to feel this bad when there is treatment > available. > — > Regards, > Hans > * Remove NOSPAM from address to send directly to me. > Hi, I’ve been doing some research and came across this board, very > helpful! > I am not sure that I have Crohn’s, I’ll give a little background: Since > August of last year, I’ve had 5 surgeries to fix a perirectal abscess. > After the fourth fistulectomy (a large hole that I had to have someone > pack twice daily) I finally went to a Colorectal surgeon in Atlanta. He > did the fifth surgery, and it was a success. In addition to the fistula, > I have had a lot of diarrhea and SEVERE pain in the anal region that seems > unrelated to the surgical procedures, as well as bleeding. I have > anywhere from 3-5 bowel movements per day. > I have just been a bundle of nerves wanting to find out what is wrong with > me, as I cannot sit or walk properly for hours after a bowel movement. I > seem to live in the bathroom, either on the toilet, or in the bathtub > trying to get relief. I have been on pain medication ever since August, > and as a nurse (no longer working) I know how bad that is. I had a small > bowel series (normal) and then a colonoscopy. I burst out crying when I > found out it was normal. I so want to know what is wrong. My doctor > mentioned that 3% of Crohn’s patients only have symptoms in the > rectum/anus region, and seems to think that MAY be what I have going on. > (I am about to turn 27, a late diagnosis for Crohn’s if I understand > correctly). The meds I’ve just been given are a cholesterol lowering > medication, which we’re using for the stool-bulking side effects, and a > cream to help soften the scar tissue by my anus. > I’m not even sure what I’m trying to ask. Does this sound like Crohn’s? > Does anyone here only have Crohn’s in the anus? I’m sure you all can > understand my anxiety in wanting to find my problem, as I can then work > towards getting "normal" or as close to it as possible. Any insight or > comments would be very much appreciated. > Kelly

Response:

Hi Kelly, It definitely sounds like Crohn’s to me, but then again, I’m not a doctor. I probably had it mildly for about a yr and a half before I had my first serious flare that made me lose 15lbs in two weeks and put me in the hospital. I finally got the colonoscopy that I had been trying to get and was diagnosed with Crohn’s at the age of 28. While I wasn’t exactly "excited" about being diagnosed with a chronic disease, I have to say it was a *relief* to finally put a diagnosis on what I had suffered from for a year. Plus, once they know what it is, they can begin treating it properly. One thing I learned from my experience is that I put up with waaay too much from my doctors before I finally got proper treatment (by being admitted to the hospital, no less! Push, push, push to get them to take your pain seriously. You don’t deserve to feel this bad when there is treatment available. — Regards, Hans * Remove NOSPAM from address to send directly to me.

Response:

Kelly This is Paul again. Susan is one of the most reliable information sources in the newsgroup. The diagnosis of chrons disease often takes years before they get it right, it took two years for me. Paul – Hide quoted text — Show quoted text – >Hi Kelly! Fistula’s are crohn’s related. I am in a small percentage of >people where the tests come back normal but I have crohn’s. When I first >got sick I had all the tests more times then I care to remember and they all >came back normal. I finally had to have emergency exploratory as I was in >danger big time weighing only 74 pounds. I had a major resection that >should have shown itself way before the emergency happened. I had blood >transfusions and all sorts of problems but still no one knew what was wrong >with me. It took me to 4 different dr’s after my first gi. The last one my >surgeon. So you may be in my group for it not showing. Keep getting >opinions like I did as the last dr I saw that sent me to the surgeon even >though he didn’t see the diseased section (couldn’t get there by then) was >sure it was crohn’s as did the surgeon. I was lucky to get to dr’s who >finally knew what to do for me. I have a good group that took me years to >get together. I wish you luck. UM MOM Susan >Hi, I’ve been doing some research and came across this board, very >helpful! >I am not sure that I have Crohn’s, I’ll give a little background: Since >August of last year, I’ve had 5 surgeries to fix a perirectal abscess. >After the fourth fistulectomy (a large hole that I had to have someone >pack twice daily) I finally went to a Colorectal surgeon in Atlanta. He >did the fifth surgery, and it was a success. In addition to the fistula, >I have had a lot of diarrhea and SEVERE pain in the anal region that seems >unrelated to the surgical procedures, as well as bleeding. I have >anywhere from 3-5 bowel movements per day. >I have just been a bundle of nerves wanting to find out what is wrong with >me, as I cannot sit or walk properly for hours after a bowel movement. I >seem to live in the bathroom, either on the toilet, or in the bathtub >trying to get relief. I have been on pain medication ever since August, >and as a nurse (no longer working) I know how bad that is. I had a small >bowel series (normal) and then a colonoscopy. I burst out crying when I >found out it was normal. I so want to know what is wrong. My doctor >mentioned that 3% of Crohn’s patients only have symptoms in the >rectum/anus region, and seems to think that MAY be what I have going on. >(I am about to turn 27, a late diagnosis for Crohn’s if I understand >correctly). The meds I’ve just been given are a cholesterol lowering >medication, which we’re using for the stool-bulking side effects, and a >cream to help soften the scar tissue by my anus. >I’m not even sure what I’m trying to ask. Does this sound like Crohn’s? >Does anyone here only have Crohn’s in the anus? I’m sure you all can >understand my anxiety in wanting to find my problem, as I can then work >towards getting "normal" or as close to it as possible. Any insight or >comments would be very much appreciated. >Kelly

Response:

Kelly You weren’t a late diagnosis, I was 48. I would get a good workup by a GI. I have a lot of anal problems so I would suggest that you see a good pain control team. Good luck – Paul – Hide quoted text — Show quoted text – >Hi, I’ve been doing some research and came across this board, very >helpful! >I am not sure that I have Crohn’s, I’ll give a little background: Since >August of last year, I’ve had 5 surgeries to fix a perirectal abscess. >After the fourth fistulectomy (a large hole that I had to have someone >pack twice daily) I finally went to a Colorectal surgeon in Atlanta. He >did the fifth surgery, and it was a success. In addition to the fistula, >I have had a lot of diarrhea and SEVERE pain in the anal region that seems >unrelated to the surgical procedures, as well as bleeding. I have >anywhere from 3-5 bowel movements per day. >I have just been a bundle of nerves wanting to find out what is wrong with >me, as I cannot sit or walk properly for hours after a bowel movement. I >seem to live in the bathroom, either on the toilet, or in the bathtub >trying to get relief. I have been on pain medication ever since August, >and as a nurse (no longer working) I know how bad that is. I had a small >bowel series (normal) and then a colonoscopy. I burst out crying when I >found out it was normal. I so want to know what is wrong. My doctor >mentioned that 3% of Crohn’s patients only have symptoms in the >rectum/anus region, and seems to think that MAY be what I have going on. >(I am about to turn 27, a late diagnosis for Crohn’s if I understand >correctly). The meds I’ve just been given are a cholesterol lowering >medication, which we’re using for the stool-bulking side effects, and a >cream to help soften the scar tissue by my anus. >I’m not even sure what I’m trying to ask. Does this sound like Crohn’s? >Does anyone here only have Crohn’s in the anus? I’m sure you all can >understand my anxiety in wanting to find my problem, as I can then work >towards getting "normal" or as close to it as possible. Any insight or >comments would be very much appreciated. >Kelly

Response:

Hi Kelly! Fistula’s are crohn’s related. I am in a small percentage of people where the tests come back normal but I have crohn’s. When I first got sick I had all the tests more times then I care to remember and they all came back normal. I finally had to have emergency exploratory as I was in danger big time weighing only 74 pounds. I had a major resection that should have shown itself way before the emergency happened. I had blood transfusions and all sorts of problems but still no one knew what was wrong with me. It took me to 4 different dr’s after my first gi. The last one my surgeon. So you may be in my group for it not showing. Keep getting opinions like I did as the last dr I saw that sent me to the surgeon even though he didn’t see the diseased section (couldn’t get there by then) was sure it was crohn’s as did the surgeon. I was lucky to get to dr’s who finally knew what to do for me. I have a good group that took me years to get together. I wish you luck. UM MOM Susan

Response:

Hi Kelly, First off, you are NOT crazy. The idea you have Crohn’s sounds very real to me. I was 32 when first diagnosed with CD and probably had very mild symptoms from age 16, so mild they fell under the radar. The proper dx was missed for over a year, mainly because of the big ego of my first GI who missed that the proper test (upper GI with small bowel follow through) was really inconclusive and should have been re-done. It could be that the SBFT missed something or that the colonoscopy did not get a tissue sample from the correct location because the changes are only on the microscopic location. My last colonoscopy was completely normal and my GI said I’m in remission however, pathology did show signs of CD in my ileum. Since CD is not continuous, if enough samples were not taken, a proper diagnosis could have been missed. Fistulas are a hallmark of CD and should be another piece in the solution to your puzzle; my first GI missed that one too. Don’t be afraid to get a second opinion from an IBD specialist. IBD is extremely hard to diagnose and people can go years without a proper diagnosis. As a nurse you may have connections to know someone associated with a teaching hospital or research facility who also sees patients. If you wish you can read about my experiences with fistulizing CD on my web site. Good luck! mgbio CD Class of ‘99 http://www.skyweb.net/~mgbio/cd/cd.html – Hide quoted text — Show quoted text – > Hi, I’ve been doing some research and came across this board, very > helpful! > I am not sure that I have Crohn’s, I’ll give a little background: Since > August of last year, I’ve had 5 surgeries to fix a perirectal abscess. > After the fourth fistulectomy (a large hole that I had to have someone > pack twice daily) I finally went to a Colorectal surgeon in Atlanta. He > did the fifth surgery, and it was a success. In addition to the fistula, > I have had a lot of diarrhea and SEVERE pain in the anal region that seems > unrelated to the surgical procedures, as well as bleeding. I have > anywhere from 3-5 bowel movements per day. > I have just been a bundle of nerves wanting to find out what is wrong with > me, as I cannot sit or walk properly for hours after a bowel movement. I > seem to live in the bathroom, either on the toilet, or in the bathtub > trying to get relief. I have been on pain medication ever since August, > and as a nurse (no longer working) I know how bad that is. I had a small > bowel series (normal) and then a colonoscopy. I burst out crying when I > found out it was normal. I so want to know what is wrong. My doctor > mentioned that 3% of Crohn’s patients only have symptoms in the > rectum/anus region, and seems to think that MAY be what I have going on. > (I am about to turn 27, a late diagnosis for Crohn’s if I understand > correctly). The meds I’ve just been given are a cholesterol lowering > medication, which we’re using for the stool-bulking side effects, and a > cream to help soften the scar tissue by my anus. > I’m not even sure what I’m trying to ask. Does this sound like Crohn’s? > Does anyone here only have Crohn’s in the anus? I’m sure you all can > understand my anxiety in wanting to find my problem, as I can then work > towards getting "normal" or as close to it as possible. Any insight or > comments would be very much appreciated. > Kelly

Response:

Hi, I’ve been doing some research and came across this board, very helpful! I am not sure that I have Crohn’s, I’ll give a little background: Since August of last year, I’ve had 5 surgeries to fix a perirectal abscess. After the fourth fistulectomy (a large hole that I had to have someone pack twice daily) I finally went to a Colorectal surgeon in Atlanta. He did the fifth surgery, and it was a success. In addition to the fistula, I have had a lot of diarrhea and SEVERE pain in the anal region that seems unrelated to the surgical procedures, as well as bleeding. I have anywhere from 3-5 bowel movements per day. I have just been a bundle of nerves wanting to find out what is wrong with me, as I cannot sit or walk properly for hours after a bowel movement. I seem to live in the bathroom, either on the toilet, or in the bathtub trying to get relief. I have been on pain medication ever since August, and as a nurse (no longer working) I know how bad that is. I had a small bowel series (normal) and then a colonoscopy. I burst out crying when I found out it was normal. I so want to know what is wrong. My doctor mentioned that 3% of Crohn’s patients only have symptoms in the rectum/anus region, and seems to think that MAY be what I have going on. (I am about to turn 27, a late diagnosis for Crohn’s if I understand correctly). The meds I’ve just been given are a cholesterol lowering medication, which we’re using for the stool-bulking side effects, and a cream to help soften the scar tissue by my anus. I’m not even sure what I’m trying to ask. Does this sound like Crohn’s? Does anyone here only have Crohn’s in the anus? I’m sure you all can understand my anxiety in wanting to find my problem, as I can then work towards getting "normal" or as close to it as possible. Any insight or comments would be very much appreciated. Kelly

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