AFter all these years of testing and been tested for crohns and today just got home from being in hositol 2 days I have crohns all of a sudden .

What confuses me as I been tested 6 other times and now it says i,m postoive for it Cleveland clinic tested me twice and many tests before surgery now as they can not find out what is wrong and many tests later I have Crohns is this common to happen to people???

They get surgery to lose colan and then bam i'm sorry sir you never had UC you have crohns...

My doctor did other tests all said negative and did one last test and said positive and he blames every thing on crohns including why I go to the bathroom and can't not hold it I believe my nerves are damged in my muscle back there is the reason I crap my self while I sleep but he will not test the nerves after all the compliations I had coma, wound infections ED now all the nerve problems in my foot I just think the doctor is lost into what is wrong with me .

HE sent me to GI wed and they gonna treat me for crohns I will go but I wanna see wht the 6 other tests for crohns are so differnt than after my colan is taken out and they did not diagnoise before...

How many folks have heard having bowelmovemnets in your sleep is due to crohns???



I also have 4 herina's 2 the size of soft ball's in my stomach he will not do surgey keeps saying not right now is that odd?? always an excuse to why he will not fix them dunno seems trange any input on this would be great.I plan to seek other doctors opeion also to see why this is such a huge deal he said one min and sent it up to not right now but we will ... he siad now lets wait to see if we fix crohns he is really big on makeing me get permo ostemy I won't go that route.

I plan to seek many differnt opioins this next few weeks and see a pian mangement doctor I think to I think being on these drugs does not help my problems either with drugs being nars they are masking the problem.. I,m no doctor but we know our body and I think my doctor is truely lost into what to do with me so we will see thanks for listening..

Jeff,
It's very difficult to distinguish between UC and Crohn's. I've been tested several times and pathology always points to UC but my surgeon still believes I have Crohn's.
The last time I was tested the results came back in a percentage which was strange but it was: 85% chance UC, 10% chance Crohn's, and 5% they don't know what it is.
It's happened quite a bit that people will think they have UC or have been told they have UC and have all the surgeries only to discover later that it's Crohn's. I don't think that your colon could have been saved regardless of the disease; I know mine couldn't.
Chin up; hopefully they'll find some answers and more importantly, some solutions.

Tough situation, but to be angry so much of the diagnosis is hard to add to all the problems. they told me for 7 years i had UC, then after my jpouch surgery they said the biopsy's were inconclusive UC or Chrohns- go figure. I just feel lucky to be alive after what happened to and all the infections following a perferated colon and subsequent emergency surgery. If your pouch is working now your in good luck- even if you have leakage at night.

Take very good care of yourself- eat well and a balanced diet. Stay away from all the American Crapp Foods- No pizza, caffine, soda, chips, hot peppers, nuts, and probably eggs, milk, bread, and soy, high fructose sugars, as well. Chrons is highly managable with diet alone, and is the only long term solution. I would definitly suggest seeing a naturalpath about your diet and disease- but be carefully takeup his advice because it can be expensive.

Many people live decades pain free and productive with perminant ileoostomy and it can't be really that bad considering you will feel better and still basically normal.

Good luck and feel free to chat w/ me on yahoo mmessanger.

thanks for info and as far as temp bag won't ever happen as thats not for me and the way I like to live in order for me to live thamks. May be great for some but for the type of person I i'm no thanks.

For the record I had one for 6 months and limited me and hated it..

I,m still very sick so going to see 3 new doc's this coming week to see what can be done .

Jeff, I know how you feel. I was in your situation, being diagnosed with Crohns about 2 years ago, after being told I had UC, going through the surgeries and looking forward to getting on with my life...
You've certainly been through the ringer more than I, and you have a right to feel overwhelmed and upset, etc. I just can't help but wonder what is missing from all the diagnostic testing... there has got to be something better coming along in the future that will be much more definitive for us.

Ask your doc's about hyperbaric oxygen therapy. GW O2 See if your hospital offers that. Perhaps a Crohn's medication will help you. The diagnosis turned out to be a blessing in disguise for me because once I was on the correct therapy, I started feeling better.

Hang in there

puravita gives you good advice too re: diet

tyvm shelby some good info there . I will being seeing 3 new doctors and will bring this up .

May I ask what they put you on they wanna put me on the same meds when I had UC and confused by this... They blame me going to the bathroom when I sleep on crohns can this be possibly??

Well, I'm not sure why you are going to the bathroom in your sleep... possibly weak sphincter muscles, or anal disease. Before I started on therapy (Remicade at the time) I was wearing a diaper at night. My surgeon told me at that point if the worst of my problems with a Crohn's-pouch was pooping myself, I was doing pretty good. I have to say, I stood up for myself and did what I thought was right at the time and demanded better. He's still my surgeon, and he was probably correct, but it wasn't good enough for me... I can't remember the last time I had to wear a diaper, but on occasion, I will leak at night. It's nothing like it was though.
I am currently on Humira, but was on Remicade for quite a long time, pre- and post-surgery. I also have to take antibiotics due to a fistula and abscess.

The friend for whom I have been posting on this board for the past week was also originally diagnosed with UC, but after they removed her colon, the problems did not improve at all. She is again in the hospital and has just had surgery to temporarily disconnect her j-pouch. (I posted separately about her doctor's comment that her "gut woke up" after her first post-surgery meal yesterday--grits...seemingly harmless, but oh, boy, did she ever get sick. Does anyone have specific suggestions as to a general diet that works for many if not most people with Crohn's disease, or is this so individualized that she needs to keep a food diary? It seems as though everything she eats causes a horrible reaction. Thanks again so much.

It was thought that I too had U/C or Undetermined Colitis they removed my colon because it was about to rupture. When I went into have the j-pouch done they discovered it was crohn's after seeing a flare in the rectum. The tests have never come back as Crohn's. I've been on remicade and that has helped until they recently removed my rectum.

Regarding special diet....My doctor told me that food does not cause a flare rather it aggrevates an existing flare that we may not know we have because it is a small flare.

Erica