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I'm 27 years old.  I have IBD and on January 30, 2008 I had a total colectomy giving me my "temporary" ileostomy.  Even with my entire colon to examine, they are unsure if I have Crohn's or Ulcerative Colitis.  It is more likely that I have Crohn's.

 Reply posted for TSisler.

Tosha,
This is my 1st time posting.  I am a 33 year old mother and wife.  Diagnosed 4-5 years ago with Crohn's.  I became very ill in March and after several weeks in the hospital had my entire colon removed.  My new GI doc. and surgeon agreed that it looked more like UC. I am having more tests as we are trying to determine whether or not it is UC or CD.  I am faced with the same decision you are faced with.  Do I stay with the "bag" permanantly, or do I have the J-pouch surgery?  I don't know what to do.  The bag isn't that bad.  I have had it now for a couple of months.  I am getting used to it, I have a good sense of humor, and have been a really good sport about all of this. (despite several "blow-outs",embarrasing sounds, and trouble finding clothes that work!)
 However, the idea of having it for the rest of my life is a bit upsetting.  I guess I figured it was "temporary".  I had an appt. today, and talked a lot about the risks involved in the j-pouch.  I really don't know what to do.  I am curious if you have made a decison. I too would like to know if people who have had the j-pouch and ended up w/complications and had to go back to the ileostomy have regrets.  Or are you grateful for the time you had w/out the bag?  was is worth it?  Help!

 Reply posted for TSisler.

Hello, I am a 45 yr old male who was told i had Chrohns in aug 08.. I had a total colectomy and was given a "temporary illestomy".. I asked about the reconnect or  j pouch and the doc said maybe.. he said the longer i wait the better.. I really dont know where to go from here.. I have a great GI doctor and he is very supportive.. my problem is if it is chrohns and not UC ,am i done.. most of the post talk about meds and diets and stuff. Im wanting help to know if there is a next step.. i do not take any meds or have any special diet.. however being that i am always tired and have pain in joints most days.. I need some help!! Thanks

 Reply posted for TSisler.

hi, i know im a little late to this response but i think u should go for the j-pouch im 31/2 YRS POST SURGERY AND COULDNT BE HAPPIER. THERES COMPLICATIONS WITH BOTH AND RISKS WITH BOTH BUT YOU ARE YOUNG AND Y NOT GIVE YOURSELF THAT OPTION YOU CAN ALWAYS GO BACK TO THE BAG BUT ONCE YOU DECIDE NOT TO GIVE THE POUCH A TRY U LOOSE THAT OPTION. THE BAG WAS EXTREMELY UNCOMFORTABLE AND UNFORGIVING. GIVE YOOUR RECTUM AREA TIME TO HEAL  TGALK TO YOUR DOCTORS ABOUT Q PROBIOTIC VSL#3 YOU CAN PURCHASE ONLINE THEY HAVE OVER 450 BILLION GOOD BACTERIA TO HELP YOUR BODY FROM THE INSIDE IT HELPED ME ABD I LEAD A RELATIVELY NORMAL DIGESTIVE LIFE MINUS A FEW FAVORITE FOODS BUT WE ALL KNOW WHAT THATS LIKE. AND I ALSO BEAT ODDS  AND AM EXPECTING MY FIRST CHILD WHICH IVE TAKEN TO FULL TERM. GOOD LUCK!

 Reply posted for slooney.

this post is directed to slooney. your story sounds very similar to my 13 yr old daughter. she needs surgery to remove her entire colon and rectum lining. we are very worried about doing this. although you are an adult any tips on calming her fears or ours would be greatly appreciated. she was diagnosed with uc in january 2006 and has been actively sick for almost a year straight now. we're new to this whole exerience and still learning about this illness but her doctors at bostons childrens hospital want the surgery done soon. the fear of putting her through this is eating us alive

 Reply posted for TSisler.

Hey Tosha-

My docs recommended that I have my pouch out and go to an ostomy because I have recurring prostatitis. As you may or may not know, the prostate lies right beside "the exit" where the pouch lies, and the docs in Denver suspected that my pouch was leaking onto my prostate as a result of a Crohn's fistula. The whole point in my going to "the eastern big research hospital near Lake Erie" (not the big research hospital in the northern midwest) was to confirm that I indeed had Crohn's, that it was going to continue to inflame my pouch, and that a fistula, even if repaired through surgery, was going to always be a concern. In my case the docs near Lake Erie determined that I don't have Crohn's (nothing really supports that diagnosis- blood tests negative, biopsies neg., fistula's neg., no sign of involvement in other areas of the G.I. system) and that I don't have "leaks" either. Somehow my pouch is making my prostate sick, or my prostate is making my pouch sick. So we're trying to figure out which, rather than doing an ostomy surgery which can have long term implications.

As for you- I guess I don't understand how leaving a diseased rectum in facilitates later pouch construction. Mine was taken out with the entire large intestine and a J-pouch constructed simultaneously, and it's worked fine for me (except for the recurring poucitis and prostate issues). In any case, especially with UC, I'd expect that the rectum will have to come out eventually. My Lake Erie doc explained to me that the issue with j-pouch reconnects is that the place of connection (e.g the anal sphincter) is THE critical factor- it's health and successful healing are what control success in J-pouch surgeries.

I can't figure out PM's either. How can we connect? I'd understand if you were wary...

 Reply posted for slooney.

Slooney-

    Thanks for your input!  Im new to posting on this forum and couldn't figure out how to PM you.

     Anyway- I would like to wrack your brain further in regards to your j-pouch/UC experience.  As of right now I'm listed as having indeterminate colitis.  At the time of my colectomy they left my rectum in so that I would have the option of a j-pouch in the future.  They biopsied my entire colon and still couldnt determine whether I have UC or CD.  I have had my all of my biopsies reviewed by another hospital.  Some of my previous biopsies they said looked like CD, but they couldn't be certain.  Both hospitals said that the biopsies from my colectomy were indeterminate.  I did have a blood test that showed the disease was in my small intestine.  However, my doctor said that it could be a false positive.  I also have some of the symptoms that are considered more "crohns-y" - such as kidney stones and mouth sores - but these can also occur with UC.  The j-pouch is approved for indeterminate colitis, but it has a lower success rate than with UC because some of the cases turn out to be CD.

    When your doctors in Colorado gave you a diagnosis of CD, were you having problems?  If not, why would they want you to get rid of the pouch before you had problems in it?  Do you have any problems now?  The site blocked what clinic you went to, but I would be interested in knowing if theres a way you can inform me.

Thanks for your help!
Tosha

Please share your experiences to help with a J-Pouch decisionHi Tosha-  I dont want to step on any toes here, but get second opinions.

I had my guts out to treat UC in a two-stage IPAA. Colon and rectum removed and a temp. ostomy in stage one,  reconnect 10-11 weeks later. I have had my pouch for 12 years. I was diagnosed a year and a half ago (or so) with Crohns disease. My docs in my home town (Colorado) had told me to abandon my pouch as they believed I had Crohns and that it would continue as long as I had a pouch. I ended up going to the ***Clinic for a second opinion to try and determine what was the best course. After five days of testing they believe that I do not have Crohns, and do not need to have my pouch removed. No ostomy.

As Im sure you know, UC and Crohns are very hard to diagnose. I am not a doc, and cannot (of course) say which you have. But I would be very careful accepting a Crohns diagnosis without significant testing that confirms it and/or prescence of Crohns in something other than your colon and rectum. No conjecture.

Since you still have your sick rectum it is possible that you "only" have UC. I am not sure why they would leave it in, frankly, as I understand that any colonic tissue can have either Crohns or UC. Should you get a J-pouch? Its worked pretty well for me for 12 years, and the docs at *** think it is in really good shape. If you can at all afford to go to *** I would go there and ask the leaders in the research of UC and Crohns and pouch health what they think.

If you have questions, or would like to speak with me directly then reply in a PM or here, and let me know who to get in contact with you.