One life to live! Live it!

[CorvusCorax]

Hello there, new member 41 year old female - my story............Dec. 2007 went into hospital and didn't come out until Feb. 2008. Had my entire colon removed and was on an ileostomy for approx. 1 year. All my hair fell out from all the drugs, lost about 40 pounds, five blood transfusions - everyone thought I was on my deathbed (well I was) but I never thought I would die - can't think like that - otherwise you have a good chance of that happening! April 2009 got my 'new colon / rectum' (j pouch - ilio-anal loop) - received a massive ventral hernia (apparently it was swelling according to the surgeon) and had that taken care of in January 2010. (ooh let's throw in cervical cancer in Jan. 2010 too! why not - more surgery) Have had numerous rectal surgeries for cysts .............now it's 2012 and I am having too many bowel movements! Usually I can control it with diet(I am not on any presc. meds - with the exception of acetimonephen for pain and slow down the bowels and iron supps.), but I seem to have what is called 'nocturnal diarhhea (about 7 trips to the lou a night) (ooohh my poor bum! ) An enterologist keeps insisting that I take Humira - I am not willing to take a drug that is a biological drug - I am the only one who has to live with any side effects. I have taken antibiotics for a few weeks - that helps - but anywhooo.....I prefer to manage through diet - BART diet - bananas, applesauce, white rice, white toast with the chicken breast thrown in there and cheese.....

After all this I am damn proud to be here and keep on trekking, but some days, the lethargy is exhausting! and I find I am always dehydrated - gatorade is my friend and soups and water and salt. Get regular blood work and scans (now have a fistula), but crikey Crohn disease has no cure yet - so life goes on - can't feel sorry for yourself - sure anyone with Crohn disease has earned their right to complain and whine - but I never feel the need for sympathy. Doesn't do you any good! As long as you are able on this planet - live it to the best of your abilities! My friends and family still wonder how a person can look fabulous - (don't want to swell my head here but.....) anyway - I tell them - I make look ok - but on the inside ......well.... everyone on this forum knows that response! Will stop typing now! Hope to get some great feedback from everyone! thanks for this forum.

 

[David]

Hi there and welcome to the community! Thank you for joining and sharing your story. And my, you have been through so much, you poor thing

When they took out your colon, did they take out your ileocecal valve as well?

Have they checked to see if the disease is active in your small intestine? Is that where the fistula originates?

Did they think you had Ulcerative Colitis when they gave you the J Pouch?

Have they checked you for pouchitis?

Sorry for all the questions

Again, it's great to have you here.

 

[CorvusCorax]

Hello David.....the ileocecal valve.....not sure, but I would like to find out now if they did take it out - could be an additive to my frequent bowel movements.

The fistula (my first - yahoo!)is in my groin area - I have to see my enterologist in December to discuss the MRI that is showing this fistula - so will get back to you on that one.

I have had pouchitis before - 2x since my j-loop and was put on antibiotics for it and it cleared it up, but only temporary - the pouchitis was back in about 6 months.

When I had my 'stay' in the hospital I had NEVER been diagnosed with ANY disease, not even indigestion - perfectly healthy female up to my late 30's, then whammo I start to feel bloated all the time, constipated, and just general malaise, then the rectal bleeding started. Did some blood tests, scans and numerous other tests and (of course), just showed I was anemic.....no ulcers, polyps etc.......then within the course of a month I was bleeding profusely and my husband took me to the hospital and they thought I had a hemmorrhoid (I said profusely right - damn doctors! ), so I was sent home.

Again, within a day or so - we went back and I never came out until early february and the diagnosis was ulcerative colitis - according my enterologist and the surgeon told me my colon was blue in color.

In regards to checking in my small intestine for the disease -my understanding is that if you have been diagnosed with Crohn disease you have inflammation in your small intestine. So, I am not sure about your question - I am misunderstanding it

Feel free to ask me anything - I am damn proud to answer any questions. Anyone with Crohn disease is a courageous person and should tell themselves that everyday!:thumleft: Keep on living to the best of our comforts!

 

[David]

Crohn's disease does not necessarily have to be in the small intestine. For example, you can have Crohn's Colitis which only affects the colon.

Have they ever tested you for C.Diff?

I agree that finding out if they removed your IC valve would be useful. Hopefully they didn't.

I guess where I'm confused is this:

1. You were diagnosed with Ulcerative Colitis.
2. They removed your colon.
3. They have you a J Pouch.
4. You now have symptoms of Crohn's disease.

Have you been formally diagnosed with Crohn's? If so, where in that timeline does the Crohn's diagnosis fall?

 

[CorvusCorax]

Hello again....last visit in the hospital they tested me for C.Diff (which I have been tested numerous times now)because I was having profuse diarrhea and it turned out I can no longer take the antibiotic Cyprofloxacin.

After I had my J-pouch everything was going find and dandy with that for about one year and then I started with more frequent bathroom trips and losing weight and went into the hosp. for rehydration and scans and told me at that time I had pouchitis (first bout)......then months go by and it happens again (pouchitis) and so I had a sigmoidoscopy and that is when the formal diagnosis was determined that I have Crohn disease.