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Rediagnosed with Crohns after 10 yrs with j pouch

I am in a difficult spot and my surgeon, although wonderful...I don't think he is telling me everything. In 2004 I was diagnosed with UC and it was severe, my colon basically responded to NO medication tx's and became hugely inflamed in the space of 6 weeks. I went from a small lesion in the sigmoid colon to being admitted to my own ICU (I was working in a hospital at the time) for 3 days, getting 3 units of PRBC's, then being transferred to a larger hospital, getting 3 more units PRBC's (packed red blood cells) and being on TPN for 2 weeks to be able to survive surgery. They did a scope right before the surgery and my doc said it was the second worse he'd ever seen, that he didn't really want to describe the severity because he would have scared me and that I would have perforated and died in two days if he did not operate as planned. I got a full colectomy with a loop ileostomy with J Pouch placement. After 4 months of healing, there was a successful takedown procedure leading to a good 5 years of JPouch living, but very expensive with Tincture of Opium required. I lost my job at the hospital and was reduced to working in clinical scenarios allowing me to go to the bathroom often, as JPoucher do need to do. In 2009 I developed a severe case of pouchitis and these began occurring with some spatial regularity, approx. every 6 months.
In Dec of 2012, I contracted a severe stomach virus which was affecting the general Midwestern population of where I live. It was a 2-3 day thing for regular people, but my 15 yr old had to drive me to the ER where my colorectal surgeon practiced, 1.5 hours away, at 2AM because I had projectile vomiting and unrelieved diarrhea. The culture revealed nothing and nothing was done.
I have had a constant "case " of pouchitis since then and finally went to my very trusted colorectal surgeon, (I have had insurance problems and only got it when the PCIP program became available from the ACA) So I didn't want to incur more expense than possible. He did a flex sig on Oct 4th with biopsies and a CT ...after the procedure he said "your pouch is VERY diseased and in bad shape...then it took a week for the biopsies to be "signed off" and the CT to be read...and now he says "You have Crohn's disease...( very definitely)... I want to GET RID of this horrible pouch. He is saying "you have to go to a GI doctor and take Remicade or Humaira....they tried to give me Remicade in 2004 to stop the UC and I have never had a reaction to a med like that in my life. I took two pills, but had to refuse after that because the feeling I got was so extremely bad that I wanted to die. I mean it was WEIRD. I COULD NOT TAKE that medicine, it made me feel like trying to end my life. I can't describe it any other way. I wasn't depressed, it was just this overwhelming feeling of severe malaise that was unbearable. So I reminded my GI surgeon of this and he says: "Well, there's still Humira...you can try that." I am losing the PCIP the end of December and want this pouch gone, but now am afraid of what Crohn's would do to someone with an ileostomy. I loved my loop ileostomy, I don't think I would have had problems with it. It is this JPouch. I am the only real caregiver for 2 wonderful girls, ages 12 and 17. They remember the initial UC and are so scared of "Mom going into the hospital again". They are terrified and now, so am I. What is going to happen? Does anyone have a definite word of advice that could help me make the right decision?.
Also, I do have a very good life insurance policy that I got 3 years before the UC ever showed up. I had a physical for it and chest xray and everything. It is a 30 yr term policy. I am going to check but it didn't have anything except a cancer "in situ" type of clause which expired 2 years after the initiation of the policy. NOTHING has ever come up cancerous. Just this stupid degeneration of the digestive system. I feel like I am going to let down my kids, they don't want me to die, but sometimes it seems like with such an insurance policy, if I died from complications, it would afford them with an inheritance that would see them through life, while my continued existence is just using up the small resource that I have from my deceased parents. I could really use some advice, if anyone wanted to come forward.
Thanks,
Maddie
 
So sorry to hear of all you are going through! I wanted to welcome you to the forum. There are a few members that were dx'ed with CD after first being dx'ed UC, hopefully they will be along.

You mention you had a bad reaction to remicade but that you took the first two pills. Remicade isn't available in pill form that I know of. It is an IV infusion that is administered in a hospital or IV lab, it generally takes 2 hours to infuse but can be shorter or longer depending on the settings and what you can tolerate. Pred, Imuran/6MP and methotrexate are all pill form, although, methotrexate can also be injection. Humira is an injection as well.

I do hope you find some answers and relief soon!
 
Thank you, you may be right. I am going to the doctors office today, where I got that medication prescribed, I am hoping they can look it up so I can get the right name. I can never take it again. It was awhile ago, but I will let you know what I find out, to be more accurate. Thanks again for your reply. I am so spooked. :eek2: thank you :hug:
 
Prednisone or "pred" is a steroid that can make you feel that way. It is usually a first line treatment to knock the inflammation down while you start your maintenance med since they can take some time to get to therapeutic levels.

There is another type of steroid, entocort, that is not systemic so the side effects are supposed to be lessened. It can take it longer to work, I think. But if pred is what you reacted to then entocort might be an option.
 
Thanks Clash. I saw my colorectal surg. yesterday and he agreed to do a reversal of the JPouch to a regular ileostomy but he split the choice 50/50 to do surgery or try Prednisone or Remicade, Humira, etc...I figured I'd rather deal with Crohn's alone and get rid of this horrible JPouch. The doc described it as "hamburger". I told him I'd rather get rid of it and just deal with Crohns,. He didn't argue much. He probably put a lot of work into the pouch and hates destroying it.
Thanks for the reply, I'll keep updated here. There is so much. I don't know how anyone could keep up with everyone here, but it's a GREAT site.
Madeleine
:smile:
 
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