I'm in the same boat as Jason518. There was some damage done in March 2017, when I had total Colectomy. Then more damage in March 2018, when I developed an abdominal enterocutaneous fistula during...
There was no other diagnosis for what was wrong with my pouch so the surgeon at the Mayo Clinic diagnosed it as Crohn's. However, they are still doing research to determine if Crohn's was the proper...
My J-Pouch failed and I had to have a permanent end ileostomy in March. I have been battling flu like symptoms since June. I have nausea, fatigue, and overall I feel very ill. I have also been...
Thanks sugarmarie, I really like those on the stealthbelt website; very sporty looking....
Hello clo2014, I had a stoma during my pouch surgeries, but I have heard that for some reason this is worst (e.g. problems with high stoma output). Plus, I am having the anus and sphincter muscles...
I met with physicians at Mayo Clinic and they are going to move forward with removal of my j-pouch. This will involve removing the anus and sphincter muscles as well. I know I can read articles on...
Thanks ks1905, I have a lot of appointments at the Mayo Clinic in Rochester Wednesday with GI doc, surgeon, and a pouchoscopy, so hoping they come up with some ideas that doesn't involve removing the...
Cupcake, That is what I am hoping, that with a ostomy the c-diff would be easier to manage. I was happy with my ostomy, I had lots of energy, so I am hoping I go back to feeling as good as I did with...
There is only one antibiotic left that I haven't tried and it is $4000 for 20 pills. I did try FMT and was good for 3 months, but slowly the pouchitis came back as well as c-diff. It is thought the...
I see a surgeon on 02/15/2017 to discuss having my J-Pouch disconnected, which will result in a permanent ileostomy. I've had chronic pouchitis and c-diff. I have been diagnosed with c-diff 14 times...
Thanks for the input everyone. Buckeye, I'm glad to hear FMT worked well for you. I hope I have the same results. I have adrenal insufficiency so having C-Diff infection is causing me to have...
I went through the 3 stage IPAA as well and my experience was similar to ks1905, and notsosicklygirl. I thought it was just me that had trouble with the loop. First surgery went great! The second...
I could only find two research studies on FT, but yes, they both had very promising results. I am hoping the Vancomycin works, but at least I have the FT option if it doesn't. Today is my last day on...
My UC stayed confined to the Sigmoid, but I experienced everything that you are experiencing, so it may not have spread. Like you, each episode I feared something else bad was happening. Similarly, I...
I was hoping after my IPAA surgery for Ulcerative Colitis I wouldn't have to post on here again about my GI issues. Everything has been going well since the IPAA surgery, but May of last year I had...
I agree with notsosicklygirl. I was on remicade and 40 to 60 MG a day and remicade made things worse. Surgery was my only option. Asacol worked for me for 3 years, but stopped working. Then I tried...
I had a surgeon present my case before a board of surgeons because I had so many problems to include: right hip pain, burning pain both heels, hair loss, blurred vision due to inflammation of optic...
I agree with a previous post of prednisone and depends. High dose prednisone would always stop flares but eventually resulted in secondary adrenal insufficiency (AI). Although I now have a J-pouch I...
I will say that the worst thing I ever did was fighting to keep my colon; it caused many unnecessary health issues due to all the pharmacological treatments. I had the J-pouch procedure last month...
Like some others have suggested, I agree that you should talk to your GI doc about high dose prednisone. I was at 40 to 60mg a day for 6 years, it was the only thing that kept me in remission....
My situation was similar to Red_34, I was running a fever of 105 and when the doc lifted my shirt blisters were popping up before our eyes; the cause was negative reaction to Mercaptopurine. I was...
I was having so much trouble with my UC that I could no longer perform the essential functions of my position; which is justification for termination according to the Americans with Disabilities Act...
I was on 40 to 60mg of prednisone a day for about 6 years, I did not have problems recovering from colds. However, everyone is different, I do know that my physician told me that while on pred I...
I had great results after my first infusion, but I was still on prednisone. After my 5th infusion I had an adverse reaction to the Remicade; eyes began swelling shut, eyes lids were to painful to...
Pluot, Yes I did, but I have had so many NG tubes inserted that it no longer bothers me. I'm just glad this is was the final surgery and hopefully ileus, and NG tubes will be a thing of the past....
Other than a short bought with Ileus, everything is going well. I did not expect to have this much control of my BM's immediately after surgery, this is great so far. It is funny, I keep expecting to...
Thanks for the input, I was given a guide that told me what to expect, but I prefer hearing it from someone that has been through the procedure. Having control of my bm's is my greatest concern, with...
I just completed stage 3 of the J-Pouch procedure yesterday morning. Those of you who have had this done before: what can I expect the first month or two? Are the bowl movements uncontrollable at...
The heels of my feet would go numb and burn with pain, this started during my first flare of ulcerative colitis 8 years ago, before remicade and prednisone. It got worse over the years, to the point...
Okay, Friday I went through the second stage of the three stage Ileoanal Anastomosis (j-pouch). I don't know if it was because I was so sick last time or what, but this procedure went very well....
Adrenal insufficiency seems to be the trigger! I always had sudden panic attacks or suffer from anxiety, this happen until I was diagnosed with UC and treated with prednisone. When I was on...
I start stage 2 of the procedure on Oct. 5. Things went very well with the first procedure, so I expect things will go just as well this time :)...
Thanks everyone for your support and comments! Everything is going well, I'm off all medications except for the prednisone, that is a big plus for me. Doc is reducing me at 5 mg per wk and hopes I...
Great day today, I've been walking around with rarely any pain, haven't even used my oxycodone; just tylenol and ibprofin. ByeByeUC, it is like you said, even with post op pain I still feel better...
First step of procedure begins at 6:00 am....
imagardener2, I have family on the way, they should be here before surgery begins. I have met with the surgeon already, I was told by another physician that my surgeon literally wrote the book on...
ByeByeUC, lol...I was thinking the same thing about my GI doc back home, she is going to be hearing from me when I get back. I will have the 3 step procedure....
Sorry for just now updating my status, things did get worse. While they were running me through all the test here at the Mayo, my colon got worse; stomach bloated, can't have bowel movements, and...
I'll try to keep everyone posted as I go through the Mayo, I'll be there Monday. Thanks everyone!...
I'm glad you suggested for me to request my records from GI doc, not only am I getting my records, I no longer have to deal with her anymore; 2 problems solved :) I've heard nothing but good things...
suebear, That makes me feel better, I would like to come off all medications....
ByeByeUC, Did you have to use a lot of prednisone before surgery? If so, were you able to completely come off of prednisone after surgery? Endocrinologist feels that even if I have surgery, I will...
Well, that bridge is burned forever. Nurse calls back and ask why I needed them, so I told her I was going to Mayo clinic. She put me on hold for awhile, came back and told me that I could no longer...
imagardener2, I took your advice and contacted my GI docs office, got transferred to nurses answering machine, waiting for her to call back. I haven't requested them from her before because she has...
summerstorm, My prednisone usage was of concern to the surgeon for J-pouch, but not ostomy. She said it could be 2 years before I could get the J-pouch because of the complications that could come...
seconder, I must be using the same hospital system that you once did...lol That is exactly what is happening here, the GI doc contacted my PC, endocrinologist, and surgeon telling them how she wanted...
Christine 1947, it sounds like you had the same situation I'm having. Sorry for not getting back to everyone sooner, I have had one doctors appointment after another and the medications are knocking...
Surgeon said I was a perfect candidate, then the GI doc sends a note to surgeon telling her not to do the surgery. I was set for surgery on the 25th now it is canceled. I am now going to the Mayo...
ByeByeUC, Thanks you for the advise....
ByeByeUC, I live in Omaha, NE., the surgeon I was referred to is Dr. Jennifer Beatty, I could not find much on her doing a Google search. I want someone with experience performing J-pouch procedure....