surgery for colitis - who can share their expereinces?

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mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/5/2009 9:26 AM (GMT -6)   
My son has been totally sick since his rapid onset of UC and is seriously considering the 2 step surgery to stop this disease once and for all. Has anyone out there had it and been happy about their decision? Has it changed your life in any negative ways?  Does the upside outweigh the downside? He has done every drug under the sun except for cyclosporin

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 5/5/2009 9:49 AM (GMT -6)   
I would check out the "Ostomies" section of Healing Well, I'm sure you will find lots of support there. I read there often b/c I might be there one day.
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/5/2009 11:34 AM (GMT -6)   
I had surgery 8 years ago for refractive disease. I opted for a jpouch and have never regretted my decision. The only downside for me is not getting 8 hours of uninterrupted sleep. However, I could change that if I would change my diet. But I guess it doesn't bother me to much because I continue to eat a diet that's about 90% fresh fruit. I encourage you and your son to visit www.j-pouch.org You can learn more about the surgery for the jpouch, permanent ostomy, or k-pouch on that site. Please be advised that many people on that site are early in recovery or having complications. The vast majority of us, myself included, don't visit the board often. Feel free to email if you have more questions.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/5/2009 11:42 AM (GMT -6)   
thanks - anything positive is welcomed. our one doc from Mt Sinai made it seem like it was the best thing since white bread, and yet our other GI doc immediately warmed of so many possible complications. it's such a hard decision or someone in their 20's but we feel like we are running out of options and time - none of the meds have worked for him. even remicade failed him agter 4 treatments. thanks for your feedback

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 5/5/2009 1:10 PM (GMT -6)   
It's not surprising that surgeons are pro-surgery, but there is abundant evidence that the overwhelming majority of uc patients are satisfied with surgery, whether it is permanent ostomy or j-pouch. 
 
More than that, newer studies do indicate that surgery is better sooner rather than later, which is a change from the past.  No doubt a GI can get your son to limp along, and remission is probably only rarely technically "impossible," but you have to ask if that's in his long term interest. 
 
I'm not so bad off as your son, but I am definitely going to have to make a decision between Remicade and surgery in the near future, and I'm leaning toward surgery.  That said, my GI is dead set against surgery and will not even consider it.  My GP thinks it's a very good idea, in contrast, as does another specialist I've seen, and I am currently researching my options.  The specialist and GP are relatively young and the GI is not.
 
Fortunately for you and your son, Mt. Sinai has a very good reputation for IBD.

mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/5/2009 1:40 PM (GMT -6)   
I will keep you posted on how he does - it's all but decided that he will do it and i believe you are right - sooner better than later. the risks of these drugs, their side effects and the fickle nature of them makes for a pretty disappointing story. the description of "limping along" is very close to what it has been like for him. i do believe that as acute as the UC is, the drugs have truly made him sicker. i wish you good luck - and yes, I am happy to have Mt sinai to turn to - they really seem to have not only a lot of expertise, but also a lot of compassion. his wonderful nurse, taking pity on his excessive bathroom visits and overall embarrassment, "faked" a C-Dif alert in order to get him into a private room til he gets things under more control. that is compassion! good luck to you

Tommy S
New Member


Date Joined Feb 2009
Total Posts : 12
   Posted 5/5/2009 2:52 PM (GMT -6)   
I'm new to this, and I've only been diagnosed with UC in Nov. 08.

But with that said, I was close to surgery after almost a month of very frequent toilet breaks, but if your son has not had a course of Cyclosporin and it is available to him, I would strongly advise he had it, as I had a Cyclosporin infusion 6 hours a day for 4 days and it eventually worked & I'm very thankful for that.

I hope he gets back on his feet quickly.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/5/2009 3:20 PM (GMT -6)   
surgery is a great thing for this. I had a perm ileo in April 2007 and its awesome, lol!

GI's are usually against surgery, they want to fix it with meds. But its ultimately your sons decision.
And it is easier to get through surgery the younger you are and the less sick you are.
I was 29 when i had surgery and i just couldnt stand the thought of 50 more years of toxic drugs goign into me and 50 more years of ups and downs. The longer those meds go into a person the more the risk for serious side effects.
Good luck!

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 5/5/2009 3:46 PM (GMT -6)   

My daughter had surgery (step 1) last July. Step 2 was in November. For her, it was the best decision.
She had her first flare in the fall of 2006 (she was 15-1/2 years old). She had 2 more flares within the next 1-1/2 years. They were very intense and kept her out of school for almost 2 months each time. You can see from my signature that she tried most meds. They would work for awhile and then stop. Even prednisone took longer and longer to work. She didn't want to try Humira or cyclosporine.

She (along with my husband and myself) tried to weigh both sides (surgery or not). She didn't want to worry about having to take these powerful drugs for the next 60+ years. She didn't want to worry about maintaining a job during a flare. She didn't want to worry about having a flare either during or after pregnancy and then having to worry about being a mom during a flare. She wanted to finally enjoy her high school years again.

We decided on surgery at the beginning of the summer to allow her to recuperate and adjust. She had her ostomy for the beginning of senior year but she was healthy and could participate in everything. She had her reversal in November and was out about 3 weeks (Thanksgiving was part of that time).

The first surgery was tough. It was about 7 hours. She was in the hospital for 6 days. It was a slow recovery (partly due to the fact that she had no need to rush back to school). It took some time to get used to her ostomy. She never loved it but she learned to deal with it. In the early days at home we thought she would never figure out how to change the appliance and such but the people on the Ostomies forum are a godsend!
Step 2 was 45 minutes long. She was in the hospital for 4 days. With a smile on her face and energy to walk the halls. After step 2 she did have some butt burn and a few episodes of "oops" on her panties (not full fledged accidents). The more she ate, the better that got. Within 2 weeks she was under control.

She had a fabulous senior year. There is a peacefulness on her face that I hadn't seen even when she was in remission. She can eat just about anything. She knows if certain foods bother her and she chooses whether or not she wants to deal with it. She is planning for college. She is on no meds. She lost all the prednisone weight and feels great.

She was in remission when she had her surgery (she had just come out of a flare). I think her mindset and the family support helped alot. We spent alot of time discussing the what ifs of the future. She had a full-incision surgery (what her surgeon performs). She had no image problems with it and, honestly, the surgeon did a great job and it is not ugly to look at and it is fading well. She knows there is a chance that she may have fertility issues. She weighed that against being in a flare as a mom and still wanted surgery.

I hope you find a decision that is right for your son. It isn't an easy decision to make and especially hard when it is your child.


--Mom of bratcat (18 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/5/2009 4:14 PM (GMT -6)   
thanks so much for those responses - they help a lot. oddly enough we are waiting for the cyclosporin medicine to come up from the pharmacy at Mt Sinai - i hope it gives him some relief from this terrible flare. also - all the info on the surgery is very comforting to me to hear of success. This must be the hardest time in parenting, watching your kid suffer. I wish you all well.

goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 5/5/2009 4:52 PM (GMT -6)   
I was diagnosed with UC in 1991 and had the two step Jpouch procedure in 1992, I was 24 at the time...I was acutely ill and never went into remission on the various meds...the surgery went off without a hitch....I had step 2 exactly 8 weeks after the first step...I had absolutely no complications with either procedure and while I hated the ostomy for those 8 weeks, I adjusted knowing it was only temporary...after step 2, it took time but I gradually introduced all foods back into my diet and had no issues with any foods except corn...4 years after the surgery I started to get pouchitis which is basically inflammation of the pouch and treated with antibiotics...they have no idea what causes pouchitis...what became occasional pouchitis became chronic and for the last 10 years I have been taking antibiotics prophalactically (spelling?)....now, after 17years with a jpouch, I have been diagnosed with crohn's disease and I'm back on this merry go round of drugs...do I regret having the jpouch? absolutely not...up until the last two years I had a good quality of life even with the pouchitis...unfortunately, many people who are diagnosed with UC get diagnosed with Crohn's later on...it is a very difficult decision to make, I know...I hope your son feels better soon...jpouch.org is a website to find out more information...
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


Neuro
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/6/2009 12:48 PM (GMT -6)   
Hi, mamaluke and everybody wink

I'm 35 years old female from Zagreb, Croatia. I suffered from UC from Spring 2003 to Winter 2008, when I had proctocolectomy with J-pouch and protective ileostoma formation. After the postoperative period and diet, I recuperated and got used to my stoma very quickly. I thought of it as a blessing after all those UC issues and it affected my quality of life in every possible positive way.

I had the second surgery (reanastomosis) about a month ago (March 19, 2009), and my J-pouch functioned excellently from the first day and still does. During the first 4-5 days after the surgery, when they kept me on liquid diet and infusion, I have had 6-8 stools a day. After they introduced solid food into my diet, the number of stools was reduced to 3-4 a day and sometimes 1 during night. Now, a month later, I can eat normally without special diet restrictions and still have 3-4 medium-consistency stools a day. I regularly drink probiotics and liquid calcium-magnesium citrate with vitamin D. So far I had no inflammation or any other problem with J-pouch, the continency of the anal muscle is good (no leak) and during bowel movements I feel no sudden urge, pain or cramps in the abdomen. After meals I have no immediate urge to go to the bathroom and can hold the stool for 2-3 hours without fear that it would leak. I take no meds to maintain stool frequency and consistency. Food only :-) So, I think that this surgery was a very wise decision and in my case the quality of life is restored completely.

However, I would like to ask goldy3 is there a limit on "life expectancy" of a J-pouch. For how many years can it keep functioning well? My surgeon thinks that, although some 40% of patients experience pouchitis at least once in ten years after reanastomosis, it is also reasonable to assume that a pouch could maintain a healthy function for life.

Post Edited (Neuro) : 5/6/2009 1:00:01 PM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/6/2009 2:01 PM (GMT -6)   
Provided a jpoucher is not diagnosed with Crohn's it is reasonable to assume that pouch will remain for viable for life. I also learned from a surgeon that jpouchers will not have incontinence issues with old age as our sphincters get a lot of exercise! Yippie!! I have met a woman who has had her pouch for 26 years and is doing fine. Since the surgery was perfected in the late 1980s that's about the extent of history there is on longevity.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Neuro
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/7/2009 5:28 AM (GMT -6)   
Thank you, Sue... it's so good to hear such good news yeah The people with J-pouch who I know are mostly very young or in their thirties and fourties. Some of them do experience pouchitis from time to time while the others don't, but they all told me that, in general, they're very satisfied with the solution of their UC problems. However, two people that I know have had to switch back from J-pouch to - now permanent - ileostoma, because it did not work well for them. They have constantly had either large number of stools, incontinency issues or very frequent episodes of pouchitis. They were both diagnosed with and treated from UC before the colectomy.

As for the Crohn's disease patients, most surgeons that I know consider J-pouch to be very risky and almost futile solution for them, because MC can affect any part of the digestive system, from mouth to anus. In case of UC, they think that J-pouch solution will be far more successful if total colectomy (proctocolectomy with ileoanal anastomosis) is performed, while subcolectomy with ileorectal anastomosis poses considerable risk of UC outburst at that tiny part of the colon that remained in the abdomen.
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