Community Forum

I am 33 and am facing surgery after a 5 year battle with Pan UC. I had a long remission after my initial flare, but this one seems to be far worse. This time it has been very resistant to treatment. I am currently taking Humira, Colazal, Hyosycamine, cortifoam, and occasionally VSL#3. I am loosing weight to the tune of 15-20lbs per month+/-. I have lost 46lbs to date. Up until a two weeks ago I ran fevers of 100-103 daily. My doctor is encouraging me to go on steroids but the side effects, especially the anxiety are a bit much for me. I remember hating the drug so much that I have been putting it off against medical advice. I am at a point now that I don't really have a choice but to try them however at this point there is no guarantee they will help significantly. I have also been told y others that they will cause complications should I choose to have surgery. I have been advised to seriously consider surgery. I have an appointment with the Mayo clinic in Jacksonville next month to get their opinion. I do not know much about them and have read mixed reviews. Does anyone know of a great surgeon in Atlanta? Also When do you give up the fight to keep your colon? My doctor seems to think getting it out would be a blessing for me because I would eliminate the cancer risk, drug side effects, and the inflammation would be gone and I would live a better life. I have a 4 year old daughter, a new born son, and a new business. What is the right option?

 Reply posted for DONNAN.

The scd diet  helps to reduce steroid side effects as well as helping uc. I only tried scd as a last resort  when medication was not working and I haven't looked back (four years).

 Make sure you do plenty of  your own research on diet before opting for surgery and keep an open mind if you are told it won't help.  There are lots of sound scientific reasons why it does.

mom with the 6 year old son.  he won't be able to eat anything he wants after surgery.  some things he will still have to be careful or not eat so that he doesn't develop an obstruction in the ileostomy or even after he has the reversal (ie mushrooms, popcorn, etc.)  some things will still cause him heavy frequent diarrhea.  he'll have to try foods out and see what causes his body problems.  for example, i love homemade chicken tenders(fingers), but i can't eat them unless i'm prepared for the excessive liquid diarrhea in my bag all through the night.  so unless i want to stay up all night, i don't eat them when my husband cooks them for dinner.  milk causes intense gas in my ileostomy loop.  so that's out.  i'm going through the reversal surgery now and will have my ileostomy taken down in oct. my surgeon has already informed me i can never eat mushrooms again because they swell up and can cause a blockage in me.  keep in mind also that it was your colon/large interestine that broke down food to the smallest form and since i won't have that anymore, i have to think about eating things that won't go through my stomach, small intestine and block my j pouch and not come out because it didn't get broken down enough.  so his diet is still limited....just not as much and he and you will find out what he can and can't eat.

 Reply posted for breezy.

Jini Patel is a crook... Do not buy anything she sells... Her books are just advertisements for things she sells on her website, and she has " E-mail consults" that cost $500, as well as phone that costs over a thousand! What a crook! Stay away. 

Do some research on Elaine Gotschall instead.

 Reply posted for DONNAN.

Well I finally broke and went back on steroids. I had to try for a remission one last time before taking on surgery. That said I am still leaning heavily toward that option. I still plan to meet with surgeons in September. While my symptoms have mildly improved I am still not well. Not to mention I am dealing with the side effects of the steroids. If any of you have tips to overcome them I am all ears. I am alos intersted in hearing more about life after the J pouch procedure and whta the recovery is like. Thank you all for  you support. I look forward to learning more. I will say a prayer for each of you and your family.

 Reply posted for DONNAN.

I chose surgery and it has been a huge success. I was diagnosed in 2002 (18 yrs old) and cured in 2004 (20 yrs old). With six years of post op perspective, it was the best decision I could have made. I am no longer sick, not in pain, and take no medications. I had an excellent surgeon who gave me my life back. Surgery has allowed me to focus all my energies on what is important/ what I care about rather than devote so much effort to feeling better and pushing through the struggle of managing a disease. With that said, it does take a significant amount of time to fully recover. Good luck.

 Reply posted for lvladick.

Please let me know how your sons surgery goes - if you chose that option.  My daughter is 14 and it has often been a thought in my mind as we breeze through one medication after another.

 Reply posted for DONNAN.

I'm the mother of almost 6-year old that has ulcerative colitis.  He had symptoms since he was 6-months old.  We have been through most of the medications with only temporary relief.  We just had him in the hospital this week for dehydration and low HCT/HGB counts.  Any lower and they would have to do a transfusion. 

I tell you this because it was one thing the doctor told me in the hospital that made me hopeful when I hadn't before.  She said that surgery is the only cure for UC.  I never thought of surgery as a cure.  I am now embrassing that idea and become hopeful again for his life.  It doesn't seem fair a 6-year old would need their colon completely removed, but this is what we are dealing with.  After consulting with the surgeon at Georgia Colon & Rectal Surgical Associates (Dr. Ambroze) we are trying to see this new way of life as a positive step for him to enjoy life.  The surgeon said he will be able to eat anything after recovery.  My son's diet is so limited it really isn't right that he has to live this way.  We are just praying that he stays stable this week to celebrate his 6th birthday and take the plung into surgery as soon as possible.

 Reply posted for DONNAN.

I can say from personal experience that surgery was a lifesaver for me.  Diseased colon gone, energy level up, no more pesky medications that are expensive and don't work and no more fear of accidents.  I am not saying you should choose this route but I can quote my wonderful GI who told me that "choosing surgery and getting rid of your colon is not failure; it is a viable option and sometimes the best one."  Good luck to you whatever you choose to do.

 Reply posted for alanschachter.

Another option is the IBD remission diet.  I have not used it but I have studied it and it appears to be on track.  You can google Jini Patel Thompson.  She has a wonderful book on the subject.  I have used the shake she talks about.  It works...

Steroids do affect surgery and recovery. 

Breezy