Questions for Ileostomates with Crohn's: Desperate for Advice!

Hi All,

How do you know when you are having a flare-up when you don't have a colon? I've had Crohn's for 11 years now, and have had at least one flare-up per year. I never felt like I was in remission, ever. The pain never went away. I usually looked like I was 9 months pregnant (at my usual 95 lbs). I always lost 20-30 lbs within a couple of weeks, throwing up, couldn't eat, etc. So I knew to get myself to the ER ASAP. It would always take anywhere from 1-6 months to get my tummy settled down, some weight put back on me, and get some strength back.

I've had my ileostomy since December 2011. If you see my profile, you can see all the complications that I've been through. I don't think I added that in the last 7 months ago I was in the hospital 2 weeks apart 3 times. #1, I had an enteroscopy and didn't wake up for almost 8 hrs. I was admitted and was diagnosed with adrenal deficiency, then septic pneumonia, then hypovolemic shock. I was emptying my bag 8-25 times a day. I lose a lot of fluids. So, a month later, I was given a PICC Line and daily bags of hydration. Also, because if I miss a day of fluids, I start urinating blood, clots, pain in my right kidney (that started from my small bowel ripping open after my colectomy, I had sepsis, and peritonitis). Oh, also, my hair started falling out a few months ago, probably within the last 6-7 months along with everything else, so bad to where I'm scared to brush it or wash it every day. I am now getting bald spots (this happened just before my large intestine ruptured when they had to do the emergency colectomy and I also lost all my teeth). It's so hard to tell what is causing what symptoms when you have so many major issues going on. I do feel like I'm having a flare-up though.

Lastly, is it possible to have the pill cam done with no large intestine? Has anyone had it done? I've had one doctor try to schedule it for me before I knew what I was doing, then when I got back to the teaching hospital they told me it could not be done for several reasons, and I cannot find anywhere on the internet where it says anything about it. Also, it seems like everything I eat gives me blockages, as small as a piece of corn, or peas, raisins; they all plump back up and get caught and cause serious problems.

If anyone can help me, I would be so grateful. My GI doctor will only see me every 3 months, tells me I need to see a shrink, and get over what happened during my surgery (which I was in the hospital for 3 months recuperating from). The first thing she says when she walks in the door is, "Have you been to a shrink yet?" If I tell her no, everyone that I've been to in the county only takes drug addicts and mentally ill people, she says, "See me again in 3 months." She's the only doctor in that hospital who won't make "emergency appointments," and 3 months is a long time to wait just to tell her what's wrong. Going to the ER for something your doctor is perfectly capable of handling seems stupid and takes away from the people who truly have emergencies. No one should have to sit in the ER for hours on end, especially when they have a perfectly capable doctor. Sorry, now I'm just ranting.

Thanks in advance for anyone who can help me. If I can't find my answers, then I am going to be referred to another hospital 2 hrs away (they are just waiting for the referral to be approved by my insurance).

"Calico"

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Hi... I am so sorry for what you have gone through. I had a total collectomy 40 years ago from Chrons but I am thankful that I never experienced anything like that.

I don't know what to tell you except that I would definately get a new doctor. So, it's good that you are going to a different hospital. I wonde why you have to go 2 hours away if that is because you live in a remote area.

I pray you get well soon.

Take care

Hi Redondo,

I Actually live in the OC, and I go to the UCI Hospital, the teaching hospital, they want me to get a 2nd opinion in LA, and UCLA teaching hospital, just for the GI problems because I am not being adequetately treated. I was hoping that SOMEONE here has had a flair up in their small intestine after a total colectomy and could tell me how it was detected. Obviously they can't do the usual tests on us, Upper and lower GI's, Colonoscopies, etc. those will show them a few feet IF they get lucky. But there's over 20 feet that is going unseen that could be so diseased and missed and causing all this pain, and my GI dr. is telling me is scar tissue! I've had 10 abdominal surgeries now (8 for endometriosis and 2 for Crohns) if I had scar tissue, I would have known it a LONG TIME AGO, and one of my 6 surgeons would have mentioned it, don't you think? My mind is starting to go pretty quickly, but I'm not that dumb yet.

I have an apt with the surgeon at UCI in less than 2 weeks, I'll get the real answers about whether or not I really do have a hernia and Crohns leasions near my stoma. I doubt they would have called in a surgeon if I didnt. And because of the air leaking out of my intestines into my abdominal cavity.

Anyways, someone has had to have had a small bowel flair up??? I just need to know how they find it. I'm done with GI Dr.'s who just tell me there's NOTHING wrong with me and send me home to come back in 3 months, just like this UCI Dr. is doing. I know my body all too well, and I know when something is not right, and something's definately not right. But if they can't find it it's cause they are doind the same tests over and over, they need to look somewhere else. This is exactly why I moved back from Tx. I've almost died 3x's now since I've been back out here, but in Tx I would have been dead for sure the 1st time.

Thanks again,

"Calico"

Well, I think I just got my answer, I found it on the UOAgA Discussion Board. They said the pillcam CAN be used with an ileostomy, but suggest taking or using a pill the same size to make sure it doesn't get stuck anywhere since there are narrowing parts of the small intestine, and to make sure it will not cause a blockage when it's done. But this is the ONLY way to dind out if there is active crohns anywhere else in the small intestine. I was just told by MY GI Dr. that it can't be done, and I am having a flair up, and Tues I will be going  to the ER. (I can't go Monday cause I have a meeting with SSI) they lost my file for nearly a year, I need to get this resolved before I can even think of doing anything else. It's been so stressful. I'd like to put all of it to rest, including my body  I fee like I've got a 1,000 lb weight on my shoulders that I can't get off. One of these days soon.  I feel like the Crohns has totally ruined my life. I want my old life back. I havent been out of been in over 2.5 years, now I'm stuck on an IV every day, 23 medications.

Ok, It's 3:30am, and I'm just ramblimg now

Calico , I am new to this forum.  I have had most of my large bowel removed because of Crohn's and years of the fistulas, pain, cramping, hospitalisation etc.  I have had an ileostomy bag for 4 years now but now have hernias, leakages and massive pain again.  I am in Australia but my specialists have checked my small bowel through endoscopy or similar.  

You need a new new doctor particularly a gastroenterologist in whom you trust.  Most gps have no idea t about Crohns and can't help. Keep on searching and researching until you find a good specialist.  Mine is the President of the Gut Ffoundation in Australia.  If you give me your city and state I am happy to see of he can recommend someone closer to you - if that can help. He travels all over the world lecturing so I am sure he will know people. Does that help?

as for ruining your life, I hear you.   I totally loathe my life.  I used to be a happy, laughing positive person.  Now I hate hate life.  I simply exist day to day to try to cope for my kids. I don't laugh and I think I am giving them a sad cranky home life and childhood.   I detest this disease. I have tried counselling, yogi, meditation and I am at the end of my tether.  I am sorry I can't help you but for me, knowing others understand through their experiences is some comfort tKe care and I am happy to ask my specialist for referrals for you.

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