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My doctor says that he is afraid that I will not feel better after surgery so he is hesitant on me having the "j-pouch" or any surgery for that matter. Do you get your energy back? Do your joints stop hurting? Do you get to eat normal food? I would love to know how you have done after surgery.

 Reply posted for tarheelmama.

I'm scheduled for surgery next week.  A 3-stage with j-pouch.  I've had UC for almost 18 years and currently on a lot of meds and make about 6-8 trips to the bathroom per day.  They've started recommending surgery a year ago when they saw signs of dysplasia.  

Would like to hear about your current status and if you're happy with surgery still.   Also, what can I expect after the final surgery to hook up jpouch?  Did you battle incontinence or extreme urgency?  Not sure what to expect about returning to work (office job), attending kids' ball games, etc.

 Reply posted for senshisays.

Drew-
Yes I had my surgery at Cleveland Clinic and will be going back there for the next 2 surgeries over the next 7 months.  I have a lot of doctors in my family and circle of friends and everyone says Cleveland Clinic and Mayo Clinic in Minnesota are the best of the best.  They were rated as the top 2 hospitals for colorectal surgery departments in the country.  I won't say that my surgeon at Cleveland Clinic has the best bedside manner nor is he very compassionate, but I'm confident in his surgical skills and training and in the end that's what's most important to me.  
Don't be afraid of biologics.  The most common side effect is lowered immune system but I was on the max dose of Remicade for 8 years and I very rarely got sick- usually just the standard winter-time cold.  They will tell you there is risk of lymphoma, however, that risk is very small and is mostly associated when using biologics in combination with an immuno-modulator like imuran or 6mp.  Of course there is no truly long term data on these drugs and that can be a little scary for sure, but I'm really grateful I had remicade to help me for so long.  It allowed me to pursue my dream of going to veterinary school- if I had to go through these series of surgeries back then, I really don't think I would have continued with school.  
Please let me know if I can do anything else to help you with your decision.  I have a lot of resources for the latest information :)

 Reply posted for senshisays.

Julie- Thank you so much for the reply and for sharing! I think it is strange that it is so hard to get info and find people to talk to that have UC. I imagine that it was both comforting and confusing at times having a sister who is a Gastro. I  feel I am at a crossroads right now and am truly glad I came across your post. I am definitely steroid dependent and I know have severe osteoporosis from the prednisone as well. That being said, I have been able to "convince" myself that all in all I am fine and this isn't really a serious matter. Until my 4th doctor told me otherwise yesterday. The biologics freak me out honestly and all I have done is continue to delay the inevitable. I am assuming you had your surgery done at the Clinic? That is where my consult is next week. Thanks again for your time. Enjoy a nice long weekend. I wish you well and a speedy recovery!
 

Drew

 Reply posted for senshisays.

It was a tough decision.  10 years ago I had a severe flare that was resistant to steroids.  I became very ill and was hospitalized.   The surgeon came in for a consult and laughed at me when I said I wasn't ready to commit to surgery.  My sister (a gastroenterologist from out of town) spoke with my doctor and got him to try me on Remicade.  Literally within 36 hours my symptoms started subsiding.  Over time I slowly got better to the point where I was completely normal again.  About every 2 years I would have a minor flare while on Remicade but was able to stop them with Canasa suppositories and/or enemas.  It wasn't until this recent flare that Remicade failed- my infusions no longer helped.  I continued to get worse so my doctor and I (also consulting with my sister) made the decision to stop Remicade and try Humira.  I had mild improvement at first, but then got worse again. There is a new drug recently on the market called Entyvio and I researched trying this therapy ndext, but the GI doc said I would need to try this drug for 6 months before determining whether or not it was a success.  I was just so sick of feeling sick that I decided to skip trying Entyvio and do the surgery.  I'm still very early in the process and I have bad days and good days, but overall I feel much better than I did before surgery and I have no regrets.  I guess my advice to you would be, if you only have mild to moderate flares and you have not tried biologics, then I would try them- Remicade bought me 10 years with my colon and I'm glad I had that, but that's not the case with everyone. Ultimately you have to choose what you are most comfortable with.  While I'm happy I have chosen surgery, it was a last resort treatment for me because it took me a very long time to become comfortable with the idea.  Let me know if you have other questions!

 Reply posted for juliekins824.

For Julie-

How did you end up making the decision to have the surgery? I am going for a surgery consult next week. I am having to choose between bumping up to Remicade or Surgery. Did you try everything and surgery was a last resort? I honestly do not feel that I am that bad to require surgery, but the doc says i have to come off the steroids. Were you on the biologics and they weren't working? How bad were your flares?

Drew

 Reply posted for tarheelmama.

I waited too long to have surgery. My doctor recommended it years before, and I was too worried about it going wrong and making me even worse. Things eventually got so bad that I had no choice, and I had a successful ileum resection. The experience in the hospital was terrible, and the healing process took time; however, it's completely worth it. I am lucky enough to be in complete remission going on 5 years now since my surgery. I am healthy, active and generally have a great diet. Everyone is different, but for me, surgery was the best thing that happened to me. If you have a good doc, they will steer you in the right direction - good luck!

 Reply posted for tarheelmama.

I have UC and I just had my colectomy on Aug. 4  in Ohio, so I'm almost 2 weeks post surgery.  I will have 2 more surgeries, and an ostomy for 8 months.  The first week was tough for me, but really just in terms of pain management from having abdominal surgery.  The last few days have been a huge turnaround for me.  I feel so much better, I'm out and about again- not quite active yet, but SO much better than I was before surgery.  The ostomy kinda sucks, but I'm learning new tricks with it and it's worth the improvement in how I feel.  I'm still on a soft food diet- this is supposed to be for 4-6 weeks following each surgery, but it's really not so bad.  The general rule (with some exceptions) is that if you can cut it with a fork then you can eat it :)  My surgeon says that in the long run once everything is healed, there are no diet restrictions!  Anyway- my experience is limited but I'm happy to share if you have any other questions!

Julie