I'm 17. I had the 3 step surgery when I was nine. I had a VERY severe form of UC and was bleeding uncontrollably and not responding to meds. But after the surgery...it never got better. I go to the bathroom about 12-15 times a day. It's basically all water, and food literally goes through me in about 10 minutes, pretty much undigested. I've tried a million diets, but NOTHING helps. I've been on Flagyl dozens of times, and that never helps. I periodically still bleed. I get hospitalized for blockages all the time. I've had a million tests, and they show nothing, no crohns, no ulcers, no nothing. My doctors are telling me that basically, the only option left is a lifetime ostomy bag. I can't do that. I've become so depressed because I am ALWAYS sick, and its wearing me down because I've had a lot of doctors tell me that its either my fault for what I eat, etc, or I'm making it up. It's only march, and I've already missed 50 days of school this year. I've truly reached the end of my rope with this. I feel completely helpless.

Is there ANYONE who has this unexplainable problem, too? Please. Just anyone.

-Chelsea

Chelsea - I am so sorry to hear about all that you have been through. It is no wonder you have had it. I don't have much advice for you dear. Have you ever tried any sort of talk therpy? It might help you come to terms with the hand that your were delt. Hang in there. We are here for you.
Lora

Chelsea, Have you ever been checked for Celiac's disease? If not, I highly recommend that you ask to be tested.
I agree with Lora, it's time that you seek some counseling. I have been in counseling for over a year and it has helped me tremendously.

This stuff isn't easy to handle. Hang in there

Chelsea I'm sorry to hear you're having such a hard time. Have your doctors tried any treatments other than flagyl? I get the impression more people respond better to ciprofloxacin (another antibiotic) than to flagyl. There are also other antibiotics that can be tried if the frequency is pouchitis-related.

You should also consider trying a good probiotic if you haven't already given this a go. A number of people find this can dramatically cut frequency.

Have you also tried using bowel slowers such as loperamide?

I'm assuming from the fact some doctors have been drawing attention to what you eat that you have already tried experimenting with diet and sticking to 'bulking' foods whilst avoiding ones which are notorious for thinning things.

Have your doctors also investigated the rest of your small intestine to check there is no other inflammation there (which could indicate Crohns, which would respond better to different treatment than just flagyl)?

Chelsea, I don't have anything to add to what the others have said. They have given some great suggestions and I hope that one of them works for you. You've been through such an awful lot and you really, really deserve to be better and feel better. Hang in there, honey, we'll all try and help you as much as we can.

Suzanne

Chelsea: Have you thought about a temporary ileostomy to see if that gives your pouch time to heal. I know it sucks and it's a terrible thing to deal with as a teenager, but maybe you'll surprise yourself and adjust really well. You may start to feel healthly again and want to keep it permanently.

I had to go to a temporary ostomy after 5 years with my pouch because things were such a mess. After 11 months, I had it reversed and started Remicade and things seemed to have improved. Yes, I hated having the ostomy, but it helped me heal.

Send me a private message if you want to talk.
Pam

quote:

Posts: 1231 | Location: Virginia | Registered: October 12, 2001

Ignored post by Shelby posted March 21, 2007 10:33 PM Show Post

MikeH

Dear Chelsea,
I'm so sorry too, to hear of all your struggles with this. The suggestions the others have made are good ones- I have had pretty rotten results w. the jpouch, but Ciprofloxacin tends to work to rid the pouchitis. I've also spoken to a couple of people very recently (in Canada) who have had very good results with Immuran (a transplant drug, info. on which you can find on this site).
I have also had a temporary ostomy (twice), and while it is quite a pain, there are some sure benefits- you will sleep, the washroom will not rule your life as it is now, you will get some peace, and your gut will have a chance to calm down. And perhaps some mysteries will be solved. (And no one can tell when you have an ostomy).
But do also be checked for celiac's disease if you haven't yet. And please, please, don't ever let anyone make you think it's something you're doing, or not doing- don't torture yourself with that kind of garbage. It is a tough road that you're on, but as you've already been told, we're all here for you. post a lot- vent your frustrations, and hold on sweetie- you will make it through.

seffy

Hi Chelsea! First off, your story made me teary. No one should have to go thru this and then have such issues, never mind a young person! I was 18 when I had my 3 step j-pouch surgery...a very long time ago! I was lucky and have had good luck with mine. I think the suggestions of a therapist is a good one, just for you to get some frustration out. That alone can cause physical issues! Secondly, I think I read on here somewhere that you had your surgery in Worcester??? I highly, highly, highly suggest seeing someone else...maybe one of the surgeons at Lahey? Drs. Roberts and Marcello are quite well known. I'm not sure if Dr Schoetz is still operating, I heard rumors of retirement floating around..but he's at Lahey and wonderful as well! I know you have been tested as you say, from one end to another...but perhaps another pair of eyes will help find some resolution for you. Let us know how you do. If you need to talk...we are all here for you!
Michele

Chelsea, I am so sorry that you are having such problems. Everyone has given you great advice. I agree with Michele that you should seek another opinion. We have alot of memebers from Massachusetts, and you can check to see which surgeons they have used.

One thing that really bothers me is that the doctors are making you feel that all this is your fault. It's not in your head, and I think sometimes with this surgery, some doctors really don't know what is wrong, so they try to dismiss it, or just see if it corrects itself.

Have you been treated for cuffitis, bleeding can mean irritation of the cuff. Antibiotics won't help that, you need to use suppositories or cortifoam for that.

The most important thing is not to give up, you need to get answers. Keep coming here and talking to us. We have all been in your shoes and we understand what you're going through. I am just so sorry you are doing so at such a young age. I hope you find a solution soon,

janna

I was put on Canasa a few years ago...it did nothing, and since my output has been watery for years, it was EXCRUCIATING trying to get those damn things in.

I agree with all of the above. My heart goes out to you. Other suggestions. Tincture of Opium. It helps me a lot. I take 10 drops as needed, but used to do it every 4 hours. Also, my doc gave me some weird yellow powdered stuff a long time ago that helped massively for butt burn because it took the acid out, but it also slowed and thickened me. I'm sorry, I can't remember what it was called. It was an old treatment, not used a lot any more. You mix it with water or juice.

Tincture of opium??? Are you talking about like....heroin opium? hahaha maybe I'm WAAAAY off.

Like everyone else, I am sorry for all you have been through. I also share your frustration in hearing doctors imply that it is your fault or in your head. To me, nothing is worse then hearing this when you already feel lousy. At makes me feel hopeless and question what I know to be true--that symptoms are read.

With this said, I do go to therapy. It does not help my physical symptoms (as they are real!) but it does help me emotionally deal with them and all their reprocusions. I often feel as if I am always sick and am missing out on life and things that other people my age get to do.

Hang in there.

Definity check into to Lahey in Burlington, they have an umber of surgeons there and Dr. David J Schoetz is still there. I am not sure if he is taking new patients but if not the rest of the team there is top notch.

Good luck

Chelsea,
Yes, Tincture of Opium is a narcotic. It slows down the intestine and relieves the constant urge to go. I've been using it 8-10x a day for almost 3 years to help me deal with this @*#! pouch. I'm not sure it will do all you need but may it help some of your symptoms.