Surgeon appointment tomorrow

Hi everyone,

I've been a silent reader of this forum for a very long time and between the UC, Chron's and now the Ostomy forum, I've learned a LOT. Thank you everyone for sharing so much and making it a smoother ride for people like me.

My journey is a complicated one, as almost everyone here ... I wanted to share it and also ask some brief questions to comfort myself of the fact that I am making the right decision moving forward and not "giving up".

I was diagnosed with Ulcerative Colitis about 10 years ago when I was in college (I am 31 now) and it started off really bad. Uncontrollable bleeding, lots of prednisone, asacol etc ... we all know the drugs. Fast forward to today, my body has become steroid dependent. I am developing signs of osteopenia and I have tried every drug under the sun. I'm on Immuran (150mg / day), Lialda (4 pills / day), Prednisone (40mg / day). I had 3 rounds of Remicade which SEEMED to help but I had terrible leg pains and body aches. After battling the insurance company to get Humira approved, I tried the loading doses and I've flared up again.

My GI had recommended surgery almost 6 months ago and I considered it, even to the point where I met the surgeon and almost scheduled the surgery date. I chickened out and thought I could beat this ... I tried Acupuncture, Chinese herbal medication, Homepathy, Aurvedic medication .... ANYTHING and EVERYTHING. Everything seemed to help in the beginning but I still have diarreah and when I come off the steroids, the bleeding.

So now, after getting 2 other GI opinions on the matter and all of them being the same 3 for 3 for surgery (that actually rhymed ), my wife, mom and myself have decided to move forward with the surgery. We are meeting with the surgeon tomorrow to possibly set a surgery date.

The disappointing feeling about this is that I feel like I am giving up, like I did nto try hard enough to '"cure" myself :( Is this the case? I've spoken to so many people, read so many storied about how after the surgery, life is quite amazing. Almost 100% fold. I have some great news and that is .. my wife is pregnant, 2 months in. I want to be able to run around with my children, watch them grow and be able to keep up with them. I also don't want to be this sick that my wife has to take care of me and the child alone :-/

I have a great job, very understanding management. I am lucky, especially in this economy. I am good at what I do, and sometimes I believe that if I did not have this disease I could be SO much more. Maybe that is one of the reasons I am giving into this surgery.

I live near the Cleveland Clinic Florida and my surgeon's name is Dr. Eric Weiss. Any input on him as a surgeon, or the facilities is welcome please.

Any questions I should be asking? I know they want to do the J-pouch surgery, which sounds great once there are no complications. I know this is a serious surgery so how can I not expect any complications?

My thoughts are, I'm young enough right now, my case isn't as severe ... I can recover quickly from this and be there for the birth of my first child (Oh I cannot wait for that day!).

I used to box, in college, I would love to be back in shape again and be off all of these medications.

More than anything else I think I just need some words of encouragement, and someone to listen to my story. We all suffer .... but at the end of the day I thank God for this, because it would not have made me the person I am today.

Welcome uc-kp! You're right. This is an extremely hard decision to make. My daughter had the surgery in July (and the reconnect in November). For her, it was the best decision. She had 3 huge flares. Steroids would get her into remission and the other meds would keep her there for a short time. The steroids would do a number on her (luckily no osteo problems). She is a senior in high school, having a truly great, fun year. Looking forward to college.

Things to discuss with the surgeon:
Laparoscopic or full incision? My daughter's surgeon only did full incision. She was fine with it and her scars are not terrible. The surgeon did a great job.

What type of pain meds will you get? The surgeon preferred to have my daughter have an epidural. That along with the PCA (patient controlled analgesic?) worked well.

Have the surgeon talk you through an "expected" surgery and recovery. How long will the surgery take (my daughter's step 1 was almost 6 hours). What type of recovery does he expect? How long in the hospital? What can you do when you get home?

Will you have a 1, 2, or 3-step surgery? My daughter had 2 steps. The first one was to remove the colon and create the j-pouch. Then she had a temporary ostomy for 4 months (it could have been 3 but she wanted to march in homecoming). The 2nd step was to reconnect the j-pouch.

What type of complications does he see you can have? My daughter had no complications. Some people find it easier to get up and walk after surgery. She had more difficulty. Loss of energy and slower. But she didn't care. She figured it was summer and she had nothing to do anyway.

Where will your ostomy be placed? You also may want to see the appliance ahead of time. My daughter saw drawings of what the surgeon would do but definitely didn't want to see any real pictures. She also didn't want to see an ostomy appliance until afterward. I did research to see what would happen and what everything would look like. A therapist told me my daughter's reaction was fine and not to worry about it. The therapist was right.

One possible issue for my daughter is that there is a chance of infertility in women with j-pouch surgery. We tried to discuss this as much as possible (pros and cons). She figured in the long run that she would rather be healthy and have a child (either naturally, with fertility help, or adoption) and be able to take care of the child than to flare either before, during or after being pregnant. She also didn't want to have to take powerful drugs for the next 60-70+ years.

My daughter was also in remission when she had her surgery. The surgeon said her recovery would be faster because she wasn't sick going into surgery.

Having a great support system, I think, is also important. It sounds like you have that with your family.

UC-kp-
I just had surgery with Dr. Weiss at CC last Friday. Got home yesterday--- dealing with some pain and other issues but otherwise ok. The surgery was successful and I have 2 more surgeries- Dr. Weiss is doing 3 steps feels that is the best for my case.

I have two children and the little one has only know me sick--- I have so much because of this disease.

I know I have lots more to go through , but I am hopeful that in a few months I will be soooo much better.

Bennie-
I am so glad your daughter is doing well and enjoying her senior year. It gives me hope that in a while I will be up an running.

Don't feel like you have failed to "cure" yourself. You sound like me twenty- so years ago. Having a type A personality didn't help me either. I thought I could control UC or else. That thought almost caused me to develop cancer. When dysplasia was found in my colon, I had a change of mind--real quickly. Listen to your doctors. As young as you are, you shouldn't have any big problems. Just think how you will be better able to enjoy playing with the baby when you feel better. :o)

So that's your surgery date?
AWESOME!!!
Now you can start counting lasts, lol.
Like this will be the last such and such i ever do while sick!

I'm lucky to have great support
I'm having the j-pouch surgery, in 2 steps. All will be well, God is great

This has been a big decision, one that I know will be a good one for the future.

I'm also walking the CCFA taking steps walk on the 28th in Fort Lauderdale, anyone else going to be there?

Yeah for Dr. Weiss. He is very knowledgeable and skilled. His whole team is amazing- the residents and internists. The stoma nurses are awesome also.

I would love to walk--- but I am not up to it yet because of surgery. I am looking forward to next year's walk.

Let me know how the walk goes.

:))

UC-KP
Thanks for asking. Actually I am feeling better. Still on pain meds-- but much less. I went to Target today and walked for about 30 min. That did tire me out. Everyday I feel a tad better. So emotionally I am also feeling better.

I understand about being nervous- is there anything you can take for nerves. I would take this time to plan what yu are taking to hospital . Also, will you have help after the surgery. I am telling you someone around to help with cooking and just picking things for you is so important.

Did you like Dr. Weiss? How did that go?

OOPS i posted twice- the first one didn't go through

You were in the hospital for about 5 days right? I was thinking of taking some of my comfortable clothes (although i think they keep u in that gown for a while). I have to have my laptop at least (thank God of wireless at that hospital), the usual, iPod, book maybe .. etc?

Anything else I am forgetting or should be on my list? Should I not even bother with the books?

I couldn't concentrate on reading but for some reason I get busy doing word searches and crossword puzzles. When my daughter came to visit in the evenings we would do these together. I watched TV and used the computer.

I didn't bring my own pj's just used the gown and a robe when I walked.

I know everyone tells you this--- but walking is soooo important post surgery. I didn;t have to wear those stupid leg pumps as much because the nurses saw how much I was walking.

I agree about the Gas-X idea. I didn;t have any at first and they wouldn't give me any unless a doctor signed off on it. I just had my husband bring me some.

As far as going to the walk--- I just am not up to it yet. I am feeling better though but get tired easily.

The rooms at the Cleveland Clinic are pretty nice when it comes to hospitals. I hope you get your own room. I did and it was great. Don't be afraid to ask for one.

Every day I wake up and when I'm about to take my meds I say "X more days until NO MORE meds!!!"
That's what keeps me going and positive!