Hi. I am new to this site. I have numerous complications and am hoping to find some comfort and advice. I was diagnosed with severe UC when I was 17 that did not respond to any treatments. I had emergent j-pouch surgery at 18. It was a 2 part surgery. I am now 29 and have been married 7 years. Since my surgery, I have had complications with frequent BMs and nightly incontinence. I have been to numerous drs, as well as the Cleveland Clinic with no success. I have tried numerous meds and fiber supplements. My bottom is constantly raw, bleeding, and itchy. To make matters worse, my fallopian tubes are blocked by scar tissue from surgery and endometriosis, making me unable to have kids. I have a large cyst on my right ovary in which surgical intervention will be required by year's end. My biggest fear is having to have an ostomy again. I would like to have my tubes opened during this surgery. My husband fears if I get pregnant, I might end up with an ostomy bag or lose the baby. I have problems keeping weight on and am constantly tired. We just had a failed adoption due to the birthmom changing her mind after 10 days of us having Gabriel. Adoption is out at this moment. Is there any reason I should not have my tubes open when I go in for surgery and try to get pregnant? Does anyone have similar problems or just some advice to help us through all these challenges?

Oh I'm so sorry for all you are going through. I cannot imagine the emotional pain you must be experiencing after such a traumatic loss as the loss of a child. 10 days may be a short time, but I'm sure you felt that Gabriel was your child and it must have been devastating to lose him.

Of course the health issues don't help. I was 30 when I decided enough was enough with the issues I had with my pouch (chronic pouchitis) and I went to a perm ileo.

I know you say you fear this, and I do understand. But, since I had my pouch removed I have been healthier and happier than at any time iwth my j-pouch (had ileo created with j-pouch left in in 2001 and then j-pouch removed due to continuing pouchitis in 2003). I was able to get pregnant through IVF and my son is 21 months old. We are now trying for a second child. Aside from an obstruction in my 5th month, my pregnancy was normal and healthy and my c-section uneventful.

I recommend that you find an experienced high risk OB/GYN and get a consult. Ask what all of the scenarios look like and what you and a baby might be facing. I had a consult with one before my IVF cycle and he really got me through the whole process. It will help you to feel that you have explored all your options and know what you are getting into if you decide to go ahead with a pregnancy as things are today.

Having the adhesions removed is really your choice to make. It works for some...and for some the adhesions grow right back.
Please don't lose hope. Have you spoke to a reproductive endocrinologist? My RE told me that she has done IVF with many j-pouchers. Some had to use donor eggs because their egg quality wasn't good.
I know that the sting from having your child taken away from you by the birth mother still hurts. Maybe when you are ready you could try adopting again.
Please don't give up. There are still many options.

I'm sorry...I'm not good at remembering everything I want to say.
I did want to mention that if your quality of life is not good with the j-pouch, a permanent ostomy might not be so bad.
I have the same fear as you regarding a permanent ileostomy. My fears are only because I am allergic to all adhesives...even hypo-allergenic ones.
I hope you feel better soon.

Hi and welcome to the site!

So sorry to hear about all your troubles. Everyone is different and results vary so widely from person to person, it sounds like your poor bum is really suffering and you need some relief. Has your GI worked with you on trying different medications and combinations of things? I found fiber just made me go MORE instead of firming things up, for example. I found if I took a whole pill of Lomotil, it made my insides hurt, but a half pill worked very well. Etc. Sometimes it's just tweaking and tweaking and tweaking the diet and meds and supplements to get the right combination. Examining your diet and for awhile, eating foods that are easy to digest can help - things with low acidity, high carb content, like starches.

I had very bad recurrent pouchitis with resulting symtoms like yours for quite awhile after my surgery. At first it was fine and just "occasional," but I got into an emotionally abusive relationship and with it, my pouchitis got really bad and basically as soon as I finished meds, it would come back. When I got out of the relationship and then sought counseling, the pouchitis really disappeared and basically has been gone ever since, with the exception maybe 1 time a year. Sometimes emotional issues and diet issues combined can cause more problems than you think. But I do agree with the others - there's only so much pain and discomfort you should live with before considering a perm. stoma; there are worse things than living a pain-free life, right? Did you have a temp ileo in between stages for the surgery? I remember thinking that I felt so good with the stoma, even if my pouch procedure ended up a complete failure, I would be happy to live with the stoma because I was pain free and in complete control of when I went to the bathroom.

We're glad you're here and are happy to be your sounding board for complaints, ideas, issues, etc. Hang in there!

Thanks for all your suggestions. To me, an ostomy is out of the pic. I had several complications from the bag. My skin broke down so bad at the site of the stoma that the surgeon had to do a bit of a tummy tuck because the skin was so necrotic. I've been living with the problems for so long, that I'm not too bothered by them. They are a pain in the butt physically and emotionally, but livable. I would love to find a cure for the night incontinence, though. My biggest thing right now is the want to be a mother. Gabriel was and still is one of the greatest joys ever. We're having a hard time moving on because the birthmother is not caring for him. He stays with a host family (friends of the grandmother)during the week and the grandmother on the weekends. We were supposed to have Gabe when he was born but the birthmom did not give him to us until he was 4 weeks old. I finally started counseling due to the stress of everything- infertility, j-pouch, depression, etc. I am really excited to have found this web site. Y'all are wonderful! Thank you!