Hi All,
Just joined the group. I am feeling a bit scared about going back to the ileostomy bag, because this time it will be for good. I had my colon removed at age 11, back in 1987 at UCSF. Over the past 23 years, I have been doing will with the pouch, up until a year ago. It started with pouchitis, then cuffitis, now fistulas. My doctor tried steroids, and antibiotics, and Remicade infusions with little success. Most recently are the fistulas which are so painful. I currently have a seton in place, but now my fistula is "branching" and I am having awful infections. Bottom line is that my pouch has probably reached it's life expectancy. I should feel fortunately that I had the pouch for so long with almost zero issues until recently, but I am feeling depressed about the reality of having the bag for the rest of my life. I have always thought this would happen one day, but I didn't think it would be when I was only 33...
I don't know how not to be depressed about this reality?

Ann,

I am sorry you are so down and having such a difficult time. I can not say I know how you feel as I am just a Mom to a child with an ileostomy but it sounds to me like having this surgery can give you your life back. That's what I tell my son when he gets down about it....the alternative for him was a life of hospital stays, blood transfusions and general hell. He had no quality of life. I try to find positive role models for him of people who have ostomies and are living life to the fullest and they are not hard to find.
I imagine there is a whole grieving process to go through for the loss of life as you once knew it but I imagine reclaiming your life and health will make you stronger all around.
You will certainly have an adjustment period to go through after the surgery and things may seem very hard at first. I know they were for us but it gets better.
I am also betting that appliances have improved since your surgery 23 years ago. You can go to the UOAA website for a list of manufacturers and they will send you samples. I find it helpful to get their catalogs as well b/c i always find things I wasnt aware of. Tell them you are a new patient and they will often send you out a supply kit...bag, scissors, samples etc....There are also lots of belts, special underwear, "intimacy wear", bag covers, ostomy armour etc.. out there. I find new things all the time.
Hang in there. I know you have a lot to go through yet but it will get better. Good luck.

Hi Ann - I'm right there with you - trying to get used to things and trying to pull out of a funk. I had surgery last Friday - exploratory and hoping to fix a fistula... then down the road do a j-pouch step 2 (I had colectomy/ileo a year ago). Instead - My surgery said my rectum is in bad shape and it may ahve to be removed. In other words - no reversal, let alone fistula repair. This disease and everything that goes with it sucks. But - I refuse to let it win. So --- after a couple weeks of allowing my self to be up and down and go round and round, I'll damn well pick myself up and move on... and I'm sure you'll be able to do the same.
hugs...

Fistulas are a beast!!!! I had some that just wouldn't quit and it gets old fast. I was not sad to go back to a bag because I knew I would be gaining something bigger than I was giving up. It's okay to mourn the loss of normalcy, but just try and look forward to all that you will be able to do again. I love not having to wear a pad all the time, I love that I don't have to be in pain to use the bathroom, I love that I don't have to spend longer than 5 minutes in the bathroom...unless I am escaping an annoying child... So much to look forward to. Good luck!

Marcene,

You really are an inspiration. Every time I read one of your posts, I start to feel hopeful again. Thank you for taking the time to help people out, even after you've got your situation under control and are satisfied with the outcome.

Thanks again,
Lynne

Wow! Good luck to you with the bag. I don't think I am much further behind you. Being newly diagnosed with crohns I was an absolute wreck. But, now--Its like colitis all over again. I am struggling with the meds and pain and running to the bathroom again. I don't give the meds much hope, since they didn't work before. I am going to give it the old college try and we'll see. I understand you being upset that you will have a bag...I too feel the same. But, to not be sick...hurting...wasting time on the toilet...I don't know....Life is to be lived and lived in agony. So, I'll send you my prayers and hugs..Good luck..I know you are struggling, but...look at these positive strong people. You can do it...Life... Sue

Thank you all for your words and support. After reading these posts, I began to cry. I feel so much better about the situation, and I am so thankful for this site!!!
Ann

Ann, I'm in exactly the same sitution that you are. However my pouch began to have problems about a year after creation way back in 1996. I initially had pouchitis, then a fistula formed and it finally branched out as well. The remicade and humira did well for a bit, but now nothing is working. I leak SO much sometimes that is is ridiculously bothersome. So I've decided that it's in the best interest of my well being to have an ileostomy (the second I've had after a failed fistula repair). So for your own quality of life, look at the independence and peace of mind you'll gain back with the ileostomy. Speaking from experience, I probably shouldn't have had the first one taken down!

I am 2 years out from my J pouch surgery. I have so much pain and itching. I just can't stand it anymore. I am thinking about getting a perm.colostomy bag. I don't know what to do. Help!

I was 30 when I went to an end ileo (with pouch still in) and 31 when the pouch came out and my anatomy was sewn shut. It was the best thing I ever did for myself. I have since had two children (now 4 1/2 and almost 2), take no drugs, have no pain, no diet restrictions, really live a very ordinary life.


Please feel free to contact me if you have specific questions...

BelfastDaniel; I agree completely with you. It has been 2 months since my surgery to return to the ileostomy and I couldn't be happier. I feel great and have so much energy.

Sweetprincessed; If you are having many problems with the J pouch, I would discuss other options with your doctor. I put up with problems with my pouch for too long, and regret not having done my surgery sooner.

Thanks for your post, Ann M. I am brand new to the site and am facing some similar issues.

I have had the j-pouch for almost 25 years, but I am starting to get fistulas and abscesses and the last 18 months the pouch has not worked well.

My doctors are not yet sure that going to an ileostomy will help me and I am too very down about the whole situation. Best of luck to you.

Ann,
So happy you are feeling so much better! I was in the same sit 7 months ago, am now a perm iliostomate and am loving life!

I feel like a broken record. Best decision I ever made was to go to a end ileo...and get back to living again!

Because...you may already know my saying...

Life is Short...Party like a Rock Star!

Hi Ann, I have just gone back to an ileo too after jpouch for 5 yrs, and only 3 months from surgery I am so much happier. I am fit, healthy, feel well, drug free - life is very good. After being sick and chasing toilets for ages you really value feeling well and independent. You get used to the appliance pretty quick. Good luck with your decision.