Community Forum

Iwas diagnosed with UC for 15 years, then had JPOUCH done. at first was greatest thing, but now 3-yrs late they think it was chrones all along. Now have same problems as UC.I am positive that a great contibuter to flres is stress, which that in itself brings anxiety. Also taking prednisone for long periods dont help body.  having support and knowing, talking to fellow sufferers does wonders. Any chance you get to encourage someone is very fulfilling and helpful.

Ihave tried probiotics but not much help, any other brands?

Yes, it is HARD to admit to others or make understand that you have a chronic disease that somtimes causes you (a MAN) to soil yourself.

Let us all pray for an ASAP cure or at least effective control drug

 Reply posted for Tys Mom.

I do not have Crohn's (as far as I know), but I did have my colon removed as a result of severe Colitis.  For me, this surgery consisted of three parts, of which I am past surgery # 2.  The recovery time for both seems to be about three to four weeks per surgery.  I did take a little more time as I devolped abscesses after the surgeries.  I had lost forty pounds prior to my first surgery so it took a while to get my normal energy levels back.  I do not regret getting these surgeries, but I wish I would have exhausted all other options before going through with it.  In theory, it should improve my quality of life as it should with your son.  I would strongly recommend seeing at least a couple doctors and doing a lot of research online before making the final decision.  I have some research under my belt, but I am by no means an expert yet.  I wish you and your son a lot of luck and hope everything turns out well for you.

Feel free to visit my personal IBD site at www.lonelysmallintestine.com  as I do have some of the things that I am currently doing that I wish I would have done prior to surgery.  Just click on the My Proactive Approach link.

 Reply posted for stefaniga.

I just have one question, should you remove the colon if you have crohn's disease? my son has had lots of diharea and at times pain and fevers, blood as well, he was hospitalized 2 times last summer for severe flare ups (lots of blood, fever, dehydration ect..) none of the medications have worked, the doctor thinks if he removes the colon he will be better, his crohn's is in the colon only. Any advice? he is 13 going on 14, he was diagnosed 3 years ago, he has not had a full remission ever, is this surgery a big mistake or a blessing in disquise? Please any advice, suggestions would be very helpful. we have already tryed pentasa, remacade, humira and methotrexate, with no success. Has anyone had to do this and how long did it take to recover, how many days or weeks will he be down, how long will he be out of school? This is his eighth grade year and so much he doesn't want to miss, he already has missed out on so much already. Thanks for listening. Tys Mom

 Reply posted for steelboy2327.

I feel both fascinated and a little scared after reading all of your posts.  I currently have a J-Pouch, but have yet to be completely closed up as I have a had a couple abscesses post surgeries.  I have only been diagnosed with UC, but the fear is that Crohn's may be causing the abscesses.  I have tested negative for Crohn's on multiple occasions and would really like to get the last surgery over with.  Has anyone had to have the pouch removed on account of the mis-diagnoses?  Are you able to keep semi normal function with the pouch even after Crohns has been determined to be the issue?  Thanks for all you help in advance.

Tony V.

If you have a moment, please come visit my website at www.lonelysmallintestine.com or you can email me at tony@lonelysmallintestine.com.

 Reply posted for chavito.

I have had active IBD since I was diagnosed in 1993 with UC. For the first 10 years, I had colonoscopies every 3 years. After being diagnosed 10 years, I go every year (though i stretch them out to about 16 months in between) I consider my GI to be very good and knowledgeable. However, since my IBD always seemed to be active and I tried various meds, the only one that worked was Prednisone and that was short term relief. Anyway, my GI wanted me to consider a colonectomy for the UC. I did research and I was apprehensive so I kept putting off my decision telling myself and my doc that I wasnt ready to have the colon removed and a J pouch. Well, after a scope several years ago, my GI said that the diagnosis was not UC but instead I had Crohns! It was Crohns Colitis, only affecting the colon which obviously led to the wrong diagnosis. One of the biopsies taken showed the granuloma that is only evident when you have Crohns. So i guess what Im saying is please, please be very certain that 1. you have UC and you will be rid of it if you have the surgery and  2. that your quality of life is so bad that the surgery will help. Remember, once you have it, then thats it. Currently, Im taking Lialda (3 piils/day) and cultrelle (probiotic) and a variety of vitamins. I am also eating the macaroons although people in my support group disagree with it. But since Ive started the Lialda, probiotics and macaroons, I have done great for almost 6 months which is very good for me. Hope this helped at least a little. Good luck   

 Reply posted for stefaniga.

Your story might be similar to mines. At this point doctors want to do surgery, but i don't want to let them, because i've heard from different doctors that i have crohn's and others said that i have uc. They want to remove my whole colon, but i don't know what to do because like i said. Some say that i have crohn's and other uc. What do you think i should do. I don't want to them to take the whole colon out and later on they will said , oh you know what, it was crohn's.


thanks

 Reply posted for stefaniga.

I totally understand what you're feeling and i hope things get better for you.  I've been diagnosed with UC back in the winter of 06.  The stomach cramping, diarrhea, and urgency was really tough to go through.  At first i thought it was stress from what i had to deal with at work.  Or back in 2001 i got food poisoning from some undercooked fish.  I still believe that's when my life changed.  I've been on both Remicade, and Humria and nothing really worked, so surgery is in my future.  I'am trying to get my head around that news, plus gather all the support i can to help me get through the aftermath of surgery, and recovery. A small portion of my brain still says this can be delt with without removing my Colon, but the other larger part of my brain says it's time to deal with this head on, and get my life back.  The pouch the surgeon will be putting in is the S pouch.  From what he says it's a better pouch, and people seem to respond better to it.  Let's hope he's right.  One of the people he worked on just did a triatholon just this summer.  So if he can do that, then there's hope for me :)

 Reply posted for stefaniga.

I've been through the same thing, I had a JPouch done in 05 it was better right after, but then some symptoms came back... including blood. I was then diagnosed with poutchitis. "They" said to try probiotics, but that never worked. Then the docs started to lean more toward Crohn's. Cause there was nothing else it could be. To control the poutchitis I started azathiaprine a immunomodulator. Yet another nasty drug, but I haven't had the inflammation or the blood in over a year. That may be an option.