Community Forum

Hello Everyone,

My name is Karen.  My husband David was diagnosed with Ulcerative Colits about 3-4 years ago.  He has been to many doctors and tried every medication there is on the market with no success.  After being on Remicade for six months also with little success we made the decision to try high dose Remicade and started infusions two weeks ago.  So far the Remicade is still not working.  David's doctor stated that if the Remicade does not work, surgery is the only other option.

We have been in contact with some wonderful people that we found from the website Great Combacks who had ileostomy surgery.   Thanks to them IF David needs to have surgery we are a little less frightened. 

If David is a candidate the newer procedure ileoanal pouch (J-pouch) sounds interesting to us.  However, we have heard that there are many complications from this type of procedure and we should talk to as many people as possible before having this procedure done.

I'd like to hear from those diagnosed with UC that have had the J-Pouch surgery.  I'd like to know if the procedure was successful, if not, why?  Likes, dislikes, etc., etc., etc.  Any information you can provide would be very appreciated.  We would be interested in speaking with you and if you are ok with that let me know and we will somehow exchange contact information.

Thank you,

Karen

 Reply posted for fidsandfrats.

I was diagnosed with UC in 1987.  I took ASA 400 mg six pills a day and Prednisone 30 mg on and off with the flare ups until April 3, 1994 for seven years.  My gastro-enterologist recommended J-Pouch surgery to control my flare ups and because I was going to be at high risk for colon cancer in three more years.  In 1994, I had the illeo-anal pull through J-pouch surgery at UCLA.  I did have some complications like thrombosis blood clot from the TPN, a collapsed lung and a drop foot following the 10 hours surgery.  I was to have my reconnection surgery after two months, when I had a bowel obstruction, the day before the surgery.  Surgery was kept as scheduled and was successful.  I had wonderful care and absolutely wonderful ostomy nurses and doctors who helped me through the procedure.  I also underwent a hernia surgery in 1998 at UCLA on an outpatient basis.  All these complications, are possible to occur and unfortunately did occur to me; however, I do not regret having had the surgery.  I am sorry I just read your post of July 2010 and hope it is not too late to talk with you, if you would still like to.  I will be very glad to call you and speak as long as necessary.  I live in the Seattle area.  Send me your telephone number and an appropriate time to call you.  Good luck for your husband Karen and much patience.

 Reply posted for fidsandfrats.

Karen and David,

My name is Scott Girddner

I live in Abilene,Texas and have had a total colectamy with an illio ainal anastimosis with a J pouch. I would be happy to talk to you about my surgeory, my disease, and my extensive experience with remicade, immuran, accutane, and anything else that may help you both.

my e mail is     wildcat_1967@yahoo.com   

my cell # is   325 725 3800  I am available 24-7    365 a year

call me at 3:00 am if you want im probably awake annyway.

my mission is to help others like myself.

 Reply posted for fidsandfrats.

Hi Karen,

I'm a mother of a 14 year old boy who has just had that surgery back in February.  He is doing very well now and he to had no more options but the surgery.  We are very happy to have done it.  I will be happy to talk with you about it some more.  You can email me at mel_rose_sun@hotmail.com  

My name is Melanie

 Reply posted for fidsandfrats.

Just curious if you have made any decisions?  Dan and I go to see the surgeon on Monday the 21st, and meet with a clinical trial doc on July 7.  After that time, we will make a decision.  I think he is leaning toward the trial.  I suppose it would give him peace of mind knowing that he tried  every drug that was out there.  There is no easy answer, and I have finally come to the realization that things won't be "normal" again. 

 Reply posted for Jonesnfl.

Hi,

If this Remicade doesn't work and it looks like it isn't, I think we are headed to surgery.  I am so scared of the surgery.  Not only the way life will be like for him afterwards I also worry about the surgery in general, any compliations that may arise, the recovery, depression, etc., etc., etc.  We will consider clinical trials too.

Best of luck. 

 Reply posted for Jonesnfl.

Hi.  Yes I heard of that website and have been there.  Hoping to talk to some folks. 

Thanks for the tip. 

 Reply posted for fidsandfrats.

Oh-also forgot to add, do you know about www.j-pouch.org?   It has lots of info.

 Reply posted for fidsandfrats.

I read your entry and my first thought was that your situation sounds just like what my husband and I are dealing with.  Hope you find answers soon.  We too are out of options, although a clinical trial may be one last thing for us to try.  Good luck!

 

 Reply posted for dmstern8.

Hello,

Please keep me informed of your son's his progress. 

I wish your son a speedy recovery and great success with his j pouch. 

Karen

 Reply posted for SalRX.

Hi Salman,

Thank you so much for your reply. Please contact me after you've had a chance to recouperate and let me know how the surgery and recouperation went, and how the J Pouch procedure is working for you.  Thanks for your reply.  Best of luck to you.  You can reach me at karen77584@sbcglobal.net. 

J Pouch SurgeryHey Karen,

 Reply posted for fidsandfrats.

I am so glad to hear you found the Great Comebacks website. When my son was facing surgery someone sent me the book to read. Through a contact- Rolf Bernischke contacted me personally and offered to speak with my son about some of the things he would be facing. I recommend the site and book to anyone I know who is facing surgery. In fact- I wish surgeons would give ppl a copy!

Anyway- my 21yr old had an ileostomy in Jan- he has CD and we have been told since his disease was limited to portion of sigmoid-rectum they would consider a j pouch- which I dont think he will do. But we do have some experience with at least the first stage and would be happy to share what we have learned. At the end we did remicade every 2-4 wks but after 6 mos and trying many other things the disease was just to far along.

Please feel free to email me- sulzers@sbcglobal.net if needed

sue

 Reply posted for fidsandfrats.

Hello, My 15 year year old son is about to have the j-pouch surgery on friday at USC medical center.  Lke your husband, my son has Severe UC.  It has been 8 months since diagnosis and after trying all medications including remicade that did not not work along with 4 blood transfusions, we were left with no other option.   From what I understand about this surgery, it is the most advance.  According to the doctors there are great successes.  But beware, things will be different.  Such as bowel movements won't be normal and that they will be frequent.  I understand this to be the cure for UC patients.  I sure hope it is.  Good luck.

 Reply posted for fidsandfrats.

Hello, My 15 year year old son is about to have the j-pouch surgery on friday at USC medical center.  Lke your husband, my son has Severe UC.  It has been 8 months since diagnosis and after trying all medications including remicade that did not not work along with 4 blood transfusions, we were left with no other option.   From what I understand about this surgery, it is the most advance.  According to the doctors there are great successes.  But beware, things will be different.  Such as bowel movements won't be normal and that they will be frequent.  I understand this to be the cure for UC patients.  I sure hope it is.  Good luck.