Hi! I'm very new to this forum, was sent here by a new acquaintance who has IBD and has successful surgery. It's now my turn.

I have had U.C. for 17 years. I was diagnosed the year my daughter was born. My niece, who is 21 years my junior was diagnosed the same year that I was and has done very well on Remicade. I, however, had survived nearly my entire 17 years on mega doses of anti-inflammitories (of every kind), Folic Acid and nightly enemas or suppositories and lots of steroids. In my 17 years I have been blessed to never had had surgery as my disease had always been located sigmoid. These last two years, however, have been very difficult and shortly after rounds of steroids I would find myself sick again. In May 2009 I was started on Remicade and for 6 months I had little relief and was quite frustrated thinking surely this would work for me as it has my niece. In late November 2009 my G.I. wanted to do a colonoscopy since I hadn’t done one in nearly 2 years and immediately following I became very sick again. By late February I was in the hospital for 6 days, hadn’t eaten in nearly 3 months and lost a great deal of weight. The biopsies showed the disease had progressed much further, the lower 35cm in severe condition and the entire rest of my colon was in moderate condition. Again the goal was to get me stronger and consider surgery. I've done a round of steroids through April 2010, been taking Remicade infusions every 4 weeks (finding a viable vein is a huge issue every month) and still taking all my other meds. My G.I. feels strongly that now is the time for surgery, reminding me of my escalated risk of colon cancer, the progression of my disease. LONG story short, I’m scheduled for a temporary ileostomy and j-pouch surgery on July 14th at Tampa General Hospital in Tampa, FL. I have the utmost faith in my G.I. doctor (Pinkas)and surgeon (Marcet) and have had a second opinion. Here’s my dilemma: These last 90 days I’ve felt the best I’ve felt in the last 2 years. ‘Deciding” to have this surgery is something I’m still having difficult wrapping my head around since I’m feeling better. I’ve never been on a blog or to a support group but I have recently met two other woman who have had the surgery. Both tell me that having the surgery while I’m feeling better is a huge plus in my overall recovery period and feel that I’m being proactive in my decision to get well and stay well.

I’m an amazingly positive, fun and outgoing person. This is just an internal struggle. Reading about leakage during the ileostomy, pouchitis after, etc. has just got my head spinning in over load. I have so much apprehension. Do you have any advice or comforting words for me? No one TRULY understands what I’m going through but I know all you do!

Lisa

Lisa,

First and foremost, WELCOME!!! We have all been through what you are going through with the IBD and medications and such. I'm happy that you have joined this group. Everyone here is so supportive.

I had to have an emergency colectomy two years ago so I didn't really have a choice in the matter, but I definitely understand what you are going through, as I had to choose to go ahead with the j-pouch surgery knowing the risks. Your fear is definitely warranted because this is a very complicated surgery. No one can tell you not to be afraid or what to expect because everyone is different. What we can do is share our experiences with you, though.

My ileostomy experience was actually not that bad. I had an end ileo for two years with the intent on getting the j-pouch after 6 months, but it didn't work out that way. I was pretty content with the ileo. Yes, I had leaks every now and then, but nothing I went through with my ileo was worse than having UC and that is the truth. When I decided to go ahead with the j-pouch I was really reluctant at first after hearing all of the horror stories about it and having my doc tell me that I would be pooping upwards of 20x a day, but I figured, why not? If it doesn't work at least I tried. It's only been 5 1/2 weeks and the best decision of my life!!!!!!!!! I love it! I haven't experienced pouchitis (and hopefully never will) and I have not gone to the bathroom more than 8x in one day (usually the average for me is 3-5). I feel the healthiest I have ever felt in my life and that includes the 10 years my UC was in remission (I only had small flares once or twice a year for about a week at a time). I can honestly say that I didn't know I wasn't healthy before, but now that I feel the way I do, it's AMAZING! I know a lot of people here have some difficulties, but not everyone does. There are a lot of people who don't visit this website and have pouches and have little or no problems with it. I think it would be a great idea to go ahead with the surgery while you are feeling good. It will lessen the recovery time if you are healthy. I was not healthy at all. As a matter of fact, I was knocking on death's door when I had my surgery so it took me about 8 months to make a full recovery (hence another reason I didn't go right for the pouch). I think that once you are rid of that colon you will feel better than you've ever felt before. I'm really glad you reached out and I hope you will continue to do so. We are always here to support you. Good luck with your surgery !

Jojo

I understand your concern about feeling great and then having surgery. This is actually the best time to have a major operation when you are in best health and your body is strong.

Surgery is big and will take a year to adjust. Once you are all healed, you will enjoy NO medicine!, no urgency for the bathroom, no blood in the stool. Surgery has its complications and is not perfect, but in many ways it is much better than UC.

Best of luck!

Thank you both for your replies. You have no idea how they help. It's a blessing to know I'm not alone and that I have support and can ask any quetions I have. Thank you for taking the time to write me back.
Hugs and blessings!

Lisa, your apprehension is perfectly understandable. Afterall, it IS major surgery we're talking about here. With that said, though, I'm in agreement with KDCPOUCH, that having the surgery now, when you're in relatively good health, will make your recovery that much easier.

I fought UC for 4 yrs until prednisone no longer worked and surgery was the only option (sure simplified the decision making). It turned out that I had toxic megacolon that was near perforation. Needlesstosay, the recovery from the first surgery was a looooong process because of my poor health at the time. Fortunately, the second surgery (the takedown) is much easier on the body. :-) In looking back, if I had known how well it was going to turn out, I would have had the surgery sooner as my periods of remission grew shorter.

Take care, and please don't hesitate to ask if you have any questions. Prayers & Best Wishes, Steve

Steve,

Your reply helps a lot, thank you for the time you took to write back.

I have been 'cut off' of medication (Remicade infusion) as of Tuesday and I guess it's no surprise that as of Tuesday night I started to have cramping and more frequent bathroom trips. I've reduced myself to a soft diet which has helped. Based on what you and the others have shared it seems that I need to be feeling the best I can to speed up the recovery.

Thank you again!
Blessings,
Lisa

Lisa,

Boy can I relate! I suffered with UC for about 5 years but had symptoms five years before that. The last 2 years were horrible...tried everything with no luck and was on Remicade for 6 months before deciding to have surgery. I was suppose to have a remicade infusion in May and cancelled it knowing I was coming up on surgery and that backfired. I flared badly for three weeks and finally my GI told me to have the infusion just to get me through till surgery without getting any sicker. Like you I suddenly felt a lot better and questioned if I had given Remicade enough of a chance or not. Well, I had my step one surgery on June 24th and have absolutely no regrets! I only thought I felt better before! It has only been a few weeks but I feel great! Of course there are adjustments to get use to but this is so much better than even my best days with UC including the 3 years i was in remission. Good luck to you and just ask if you have questions. The people here are wonderful!

Tiffany!!!! Your POST was the one that I was looking for! Thank you! All the responses have been encouraging and reassuring and I know I'm doing the right thing but you know that old addage, just because it's the right thing doesn't mean it's easy!

I'm so glad I found this forum. Everyone is so supportive and knowledgable. I'm feeling blessed despite the fact I have a journey ahead of me.

Hugs!
Lisa

Lisa, Hope all has gone well with your surgery and you are one the road to good health!

I just found your post, I was searching for GI's in the Tampa area that understand J pouches.
I moved to Florida two years ago, had my surgeries in '05 and '06 in Philadelphia...and have had to find all new doctors in Florida. My surgeon in Pa did my routine check up for the first 3 years right in his office. I had long term UC and ended up with stage 1 colon cancer.
Last year, I had the first biopsy of my rectal cuff in a hospital as I saw a surgeon in Fl for follow up. Wondering if I should see GI in the area. Any names you can provide in Tampa area will be appreciated. Again....Best wishes for speedy recovery ! j

Any feedback you can provide regarding GI followup versus Surgeon followup will be appreciated.

Hello, hello! So glad you wrote back. My surgery went so well that I was able to get the "one-step" without the ileostomy first. I guess, despite the awful meds and Remicade side effects it really did help the ole' large intestine enough to move ahead. I am so grateful!

I'm 3 1/2 weeks post op and I have already noticed a difference in how the pouch is working. There is more control and the frequency has certainly decreased since weeks 1-2.

My surgeon is Dr. Jorge Marcet. He's in a practice with two other, reputable doctors as well and I HIGHLY recommend them. They are out of Tampa General Hospital in Tampa and are a very reknown team. If you'd like more information, please private email me at rcurcio3@verizon.net since I'm not sure what the 'rules' are on this forum as to what info/phone numbers I can give out.

Hope to hear from you!
Hugs,
Lisa