I thought I was cured

Question:

- Hide quoted text — Show quoted text – > Please understand that I have not been living with CD for a long time, so I > may sound a bit ignorant.  About 8 years ago I began having bad pain just > below my belly button.  It was unlike any other stomach pain I had ever > had.  Stupidly I just dealt with it for about a year until I started > having blood in my stool.  I went to the DR. and he sent me to get a scope > down the esophagus (nothing there) then another one from the other > direction.  The GI said after the test that I had Crohns Dieses.  He put > me on some Prednisone (sp?) and some sulfa type pills.  Well it seemed to > work.  Other than the fact that I got sick every week from the Pred., the > pain went away.  Over the next few months I discontinued all medications. > I would have an occasional pain that I thought was this CD coming back, > but it never really amounted to anything.  I was gaining weight and felt > fine.  I did however have irregular bowel movements (like every time I > left the house and no bathroom was around). > Anyway, now over the last couple of months I have had this pain come back > pretty regularly and I have lost some weight (the weight loss could be > contributed to my wife leaving me after 10 years?like the divorce diet). > Regardless, I can?t take the pain anymore, so I am going to go to see a > GI.  I did go to a GI about 2 yrs ago just to make sure nothing was going > on.  On that trip he did some tests and said he did not think I had crohns > even though the other GI had photos and lab report.   > My question is: what should I ask the DR.   I mean I am tired of not > knowing what is going on.  I would like to have something to tell him > other than ? I have bad pain?.  I know there is something wrong.  I feel > real bad and the pain is real bad.  Any suggestions on convincing the DR. > there is something wrong.  I guess he figures?well its been all these yrs > and no problems?it cant be that bad. > Sorry this is so long.  Any help would be appreciated.

hi first i am sorry to hear about the illness recurring and about the divorce..been there..done that…re the divorce..if u have a spouse who cannot live with you the way you are..u are better off without her(mine left after 29 years) anyway…check your temperature..mine always goes up in a flare…joint and muscle pain are other signs of ibd…i also get these things on my skin that look like small infections..they do NOT heal up until the flare is over… and if you already were dx with crohns…its crohns most likely…crohns and uc dont go away,..they go into remission for some people ..for a long time for some people.. my first scope was actually done because of the symptoms i just mentioned, fever and joint ;pain…as well as the bleeding and i was dx with uc..then later with crohns colitis..keep at the doctor so u can be treated properly… as for the divorce…i learned how to date again(after all that time) by going on matchcom..and then i met someone..and we are married(3 yrs this june)..and he accepts me for who and what i am…i have never been happier…my ibd is not particularly at a good place right now…but it doesnt matter to him… so good luck..u have my complete empathy!~ annie

Response:

your sx’s are pretty typical of crohns and it is common for one to have periods of remission.  if your g.i. knows anything, he won’t think your crohns "healed", but you was lucky enough to have one of those remission periods.  during the high inflammation/active periods, he will need to understand what part of your system is acting up and treat it accordingly so you may have fewer problems down the road. jeff

– Hide quoted text — Show quoted text -> Please understand that I have not been living with CD for a long time, so I > may sound a bit ignorant.  About 8 years ago I began having bad pain just > below my belly button.  It was unlike any other stomach pain I had ever > had.  Stupidly I just dealt with it for about a year until I started > having blood in my stool.  I went to the DR. and he sent me to get a scope > down the esophagus (nothing there) then another one from the other > direction.  The GI said after the test that I had Crohns Dieses.  He put > me on some Prednisone (sp?) and some sulfa type pills.  Well it seemed to > work.  Other than the fact that I got sick every week from the Pred., the > pain went away.  Over the next few months I discontinued all medications. > I would have an occasional pain that I thought was this CD coming back, > but it never really amounted to anything.  I was gaining weight and felt > fine.  I did however have irregular bowel movements (like every time I > left the house and no bathroom was around). > Anyway, now over the last couple of months I have had this pain come back > pretty regularly and I have lost some weight (the weight loss could be > contributed to my wife leaving me after 10 years.like the divorce diet). > Regardless, I can’t take the pain anymore, so I am going to go to see a > GI.  I did go to a GI about 2 yrs ago just to make sure nothing was going > on.  On that trip he did some tests and said he did not think I had crohns > even though the other GI had photos and lab report. > My question is: what should I ask the DR.   I mean I am tired of not > knowing what is going on.  I would like to have something to tell him > other than " I have bad pain".  I know there is something wrong.  I feel > real bad and the pain is real bad.  Any suggestions on convincing the DR. > there is something wrong.  I guess he figures.well its been all these yrs > and no problems.it cant be that bad. > Sorry this is so long.  Any help would be appreciated.

Response:

Hi nairb, Few things: 1) If your GI doctor says "well, It’s been there all this time so it’s not bad." get another doctor, immediately.  You already have a diagnosis of Crohn’s (correct?), which can go into remission for years before showing up again. 2) If you are having pain, especially severe pain, make it known to the doctor.  Document your symptoms when you have them.  Time of day, severity (1-10, 10 being worst pain you could ever imagine), duration.  Bring this log to your appointment.  Besides pain, log bowel movements per day and consistency (diarrhea, etc).  Also any notable changes in bowel movements (blood, etc).  If you bring this kind of information to your appt, it will show the doctor that you are serious about the problem (i.e. it’s not just a minor thing) and it also helps him with the diagnosis, because you are less likely to forget something when you are there. 3) Stress can trigger a flare up, especially something as traumatic as a divorce.  Don’t add anxiety over crohn’s to your stress level.  If your GI doc isn’t listening to you, ask GP for another referral (if you trust your GP).  I can’t stress this enough: don’t let them write you off.  If you are in pain, something is going on, and you need to get it checked on. Especially since you have been diagnosed with crohn’s. Hope this helps. — Regards, Hans * Remove NOSPAM from address to send directly to me.

– Hide quoted text — Show quoted text -> Please understand that I have not been living with CD for a long time, so I > may sound a bit ignorant.  About 8 years ago I began having bad pain just > below my belly button.  It was unlike any other stomach pain I had ever > had.  Stupidly I just dealt with it for about a year until I started > having blood in my stool.  I went to the DR. and he sent me to get a scope > down the esophagus (nothing there) then another one from the other > direction.  The GI said after the test that I had Crohns Dieses.  He put > me on some Prednisone (sp?) and some sulfa type pills.  Well it seemed to > work.  Other than the fact that I got sick every week from the Pred., the > pain went away.  Over the next few months I discontinued all medications. > I would have an occasional pain that I thought was this CD coming back, > but it never really amounted to anything.  I was gaining weight and felt > fine.  I did however have irregular bowel movements (like every time I > left the house and no bathroom was around). > Anyway, now over the last couple of months I have had this pain come back > pretty regularly and I have lost some weight (the weight loss could be > contributed to my wife leaving me after 10 years

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