Very scared and hopeless after J-pouch Surgery 1/3 and Ileostomy Creation

[lizadair95]

Hi all,

I'm Liz--24 y/o woman, currently in grad school (or was about to start my last year of school, 8 hours from home) but then I had some complications. I had ulcerative colitis for 6 years, but it never responded to medication. Finally, after four blissful (and inexplicable) months of no symptoms, I entered a flare from Hell. Nothing touched it. I wasn't eating much, so BMs weren't even much of a problem. I was in intense pain, admitted to local hospital, and finally, transported as an emergency patient to a larger teaching hospital to have my colon removed.

I am supposed to be having a three stage J-pouch procedure. I had no complications after the first surgery...which was about 4 weeks ago. However, I am struggling emotionally...and even though the ileostomy is temporary, I have found that I am unable to deal with it psychologically. I have even contemplated killing myself. As much pain as I was in, I am currently regretting the surgery. My colon was in the early stages of Toxic Megacolon, BUT up until those few weeks of pain, I had successfully dealt with my symptoms well enough to finish college, move away, go to grad school to pursue my passion, and make a life for myself. It was hard, but being "normal" is and was very important to me. I even taught through a horrible bout of C-diff about 6 months ago! I can handle almost any physical distress...I am very good...or WAS very good at controlling myself, despite the urgency and blood and etc. I never even had an accident in public, even when going 20+ a day to the toliet.

But this ileostomy has been a thief of all control and joy. And the entire situation seems to have stripped me of all I worked for. My life is chaos. I need help, but I don't know what to do exactly. I would appreciate it so much if you guys can give me any tips or info you have about this situation, particularly the following:

General problems/questions...

1. Leaks, leaks, leaks. These bags won't stay on my body! I tried a two piece system with closed bags (bc that is the least obtrusive to me and the adhesives from the wafers are really hard on my skin) and they simply fell apart, constantly. I had attempted to go to the beach with my family, and my entire trip was ruined. I couldn't leave the condo. I couldn't eat for fear of the bags bursting--which one did. In public. And then two more did, on the drive home. This wasn't a problem right after the surgery, but something seems to have changed and now suddenly none of the bags want to stay on. My skin is very dry at the moment, from steroids pre-surgery I think, and I'm wondering if this is why nothing works? I don't know, but I've broken down every day for a week now. I can't leave the house. I feel like my whole life has been stolen from me. I used to be able to go out whenever I wanted, even in a flare I could manage if I controlled my eating, but now--even when I don't eat for hours--I have crap leaking out of bags and all over me. If this continues, I am worried I will spiral further and seriously hurt myself. I already struggled with depression before all this happened, and now...I don't know. Any suggestions? The ostomy nurse is 5 hours away, so I don't know how much she can help. My mom is a nurse and has been helping with everything, but she can't make the bags stay on either. Also, my skin around the stoma is raw and red from all the changing. The skin is hurting, and I think I have some sort of skin problem starting in the peristomal skin. What helps with leaks? The skin irritation?

2. Anxiety/Depression. I feel miserable. I cry all the time. I won't leave the house. I felt better before the leaks started, but now I cannot function. I'm living with my parents during the recovery period, and I'm driving them crazy as well. How do you cope? Everyone seems so grateful for the surgery, but I don't know if it is worth it if I have to quit school and live at home in fear of poop leaking everywhere all the time...??! How do I act like my old self?

3. All of the leaks have caused a small infection (I think) in my largest incision right under the bag. It smells. It is leaking pus and blood. The nurses just told me to go to the ER. But I think two major issues are a.) stool leaking into the incision and b.) the bags irritating the incision because they're so large and cover so much space. I am 5'6 118 lbs (usually 125/130) with a pretty flat stomach. Has anyone tried pediatric bags? Or something that covers less space?

4. How long did you have to wait for the reversal? I am constantly nervous that my doctors will try to postpone it. I have been told I can have the j-pouch creation surgery 6-8 weeks post colectomy...and the last surgery (reversal) 6-8 weeks after that. Is this true? It seems like a lot of people on this forum have to wait much longer between surgeries. I meet with my doctor in a week, so hopefully I'll finally know for sure soon. I really, really don't want to wait. Is it possible to have surgeries 2 and 3 done at the same time? How likely is my surgeon to agree to speeding things up if I'm healthy enough? I am worried about losing my TAship (which pays for my schooling and living expenses, etc.) because of the surgeries and recovery time. I have to go back to work in August/September. Or, I have to AT LEAST know the surgery dates far ahead of time to schedule subs for my teaching and plan my thesis work. And how on earth am I supposed to teach classes with leaking bags??

Any help welcome! Sorry I seem so crazy and down. I'm working on it.

[Roark]

Liz,

It's been several months since you posted this and I hope I'm way too late to help because you got on top of things and nailed it. But if you didn't....

I just had my Ileostomy put in. I have an option on the three stage surgery but my surgeon wants to biopsy my colon looking for Crohn's before they fully commit. I'm cool with it. Honestly, I may choose to keep my stoma rather than risk the J pouch. It has complications. This is a sure thing.

Reading through your whole post, I think you should get aggressive about finding a good Wound Nurse support system. The hospital where I had my surgery had a phenomenal group that has been here for me - both in the hospital and once I got out - and they have made all the difference. Learning to use the equipment and dealing with errors, problems and challenges is what they do. I would have been screwed without them.

If you don't have one, get one.
If you have a bad one, go find a better one.
Don't stop until you have this in hand.