My ulcerative colitis story (j pouch or remicade my last options)

Anthony, Hello & Welcome!

You will get more advice on j-pouches on j-pouch.org or on the ostomy board here on HW. To get there, click the link above that says "diseases and conditions" and scrolll down to O.

I am also considering Remicade. I am quite a bit older than you but in the same boat. I am on Asacol, 6mp and using rectal. I just got through a course of prednisone, I was able to taper off but I was on it for TOO LONG. How fast are you tapering? I had to taper really slowly. Are you using any rectal medications?

The decision between Remicade and surgery is a tough one and it's a decision you will have to come to on your own. You know, there is also the option of getting involved in a clinical trial... I think I would go for Remicade but everyone is different and needs to do what is right for them. The long-term success rate with surgery is probably higher and the long-term side effects of Remicade are probably unknown so it's definitely risky. Just make sure, if you're serious about surgery, that you use a very experienced CR surgeon. Also, do every test possible to rule out Chron's. If you have surgery and end up having Chron's, you won't be able to have a j-pouch. If you don't want a perm ileo, you definitely need to have all the facts and make a decision.

Hope you find information and support here on HW.

I can certainly understand your concern about Remicade...we just recently made the decision to put our 13 yr old daughter on it. I am scared sh$tless of the long term side effects, but we have to focus on her quality of life NOW. Prednisone also stopped working for her. I feel your pain going through your middle school years while taking it and dealing with the weight gain. I would say Remicade is worth a try for you if it is that or surgery. good luck to you

how is your daugher going on the remicade?

i feel so sorry for you and my parents having to deal with a sick child.

its strange but as i've grown up i stopped getting the sideeffects from pred, i was so scared about being a 16 year old and now 19 year old with the swollen up fat face but i've been taking pred for 6 weeks and havnt had a sign of it, i guess i'm kind of resistant to it now

Anthony,

I am copying a reply that I gave to another thread. The only thing I would add is to say that remicade does work for many people. Unfortunately it did not for my son. Just make sure that you are fully aware of side effects. When my son Dillon, who is about the same age as you, was first diagnosed, surgery was not even allow to be discussed. We now look at it as a blessing in disguise.

Here is my previous post:

Mumbai39,

There is not an easy answer to your question. You need to start by talking with your GI and making an appointment with the very best colorectal surgeon that you have access to and start asking them questions.

This is very major surgery and has a lot of judgement calls that need to be made along the way. The most experienced surgeon is your best bet at achieving a positive outcome.

You ask if surgery is a cure?....all I can tell you is that my son was terribly ill for a couple of years, his life was out of his control and we were terrified by the thought of years and years of these hard hitting drugs. The medications were already taking a serious toll on him. He took a year off of school to have his surgery done in 3 steps. I will not lie...it was a very difficult year. These surgeries have a high complication rate and he had more than his fair-share. However, he is now about a year post his takedown and is HEALTHY in every way. All blood tests come back completely normal, he can make plans and know that he will be able to keep them.

He has 5-6 bowel movements a day and thus his life has changed from what it was pre UC. However, he has NO pain, NO urgency and the ONLY meds that he takes are some imodium every now and then. There are people on this site that say that surgery should be only a very last resort but when I see my son laughing easily with his friends, able to hold down the job he wants because he is not calling in sick all the time, making plans for the future that he knows he will be able to keep and just living life exactly the way a teenager should……I say a silent “thank you “ to his surgeon who, in my books, has cured him in every way that is important.

We know that pouchitis needs to be on our radar but we also know that almost all cases are very easily treated with a course of antibiotics. We also are aware of the possibility of future bowel obstructions but we have been that course already and know that the possibility is much greater that there will be no more issues.

You also ask about J pouch VS ileostomy. There are pros and cons to each and this should be discussed with your doctors.

Surgery is not for everyone. The majority of Ucers will never need it but there are many who are tired of their life being out of control and tired of or not wanting to try the numerous medications that are all know to have side effects. As well there are those who become so sick that they have no option. The take home message is to talk to numerous doctors and people who have been through this so you can take your time and make a fully educated decision. Surgery is and should be a very personal decision. It should also not be thought of as giving up. It is a very courageous person who looks at all the facts and decides to take the difficult route.

I know you asked a one-sentence question and this is a very long answer. However, lately there has been a lot of controversy on this site concerning surgery. I just want to really point out that you should talk to numerous doctors, become FULLY educated to ALL the pros and cons and then make what, is to you, a very personal decision. Just know that there are many of us who believe that surgery has been a blessing and our only regret is that we did not do it sooner.

I was in your position a couple years ago. I started Remicade to get me healthy enough for surgery. But then a colonoscopy showed that Remicade had healed most of my colon, so I decided to continue Remicade over surgery.

I know that the cancer risk sounds scary, but less than 1% of Remicade users develop cancer. People are much more likely to die in a car crash, but that doesn't stop people from driving/riding in cars. We take risks everyday; it's all relative. Most of the people who developed cancer were taking both 6MP and Remicade at the same time.

You should try to get a definite answer about whether you have Crohn's or UC. If you have Crohn's, you won't be able to get a jpouch (jpouch is made from the end of the small intestine, which can become inflamed in Crohn's).

im just so scared about the cancer risk, i fit perfectly into the people that have developed it from remicade because i've been taking azathioprine for so long, even though i realise it is low. the C word is just so scary!

and they cant determine what i have, im having a colonoscopy in a few weeks and theyll do some biopsies and stuff but its almost like i have both diseases :\

ive been doing research on LDN treatment, does anyone know if anyone in australia has gotten this? thanks

Hello Anthony,

Am sory you've been suffering so, and for so many years.  I can't comment on the remicade (what is this?  is it a blood transfusion?  if so I did get 4 units after my last pregnancy), but when I was 15 I suffered badly from colitis.  It was quite bad with constnat bleeding and cramps, lots of blood loss (I was so white people I didn't know at school would ask if I was ok) and was down to 84lbs.  Drs saw no impromevemnt with hospital rest on IV and high doses of prednisone that they removed my colon and created a jpouch .  I did have all 3 surgeries and have had my pouch for 23 years or so.  Everyone is different so I can't recommend anything as I don't fully know your situation, but I will say it's nice living pain free. (Even though it was many years ago, I do remember the colitis well).  The surgeries aren't easy (esp the first two), but no pain after eating.  With the pouch, I do need to use the washroom quite a few tiems a day, whcih is only awkward if at someone else's house...but then again, you'd have the same thing now plus being sick.  Some people as well live with the ostomy bag, and for both, it is a risk.  Anyways, let me know if you have any jpouch questions. I do hope thigns improve for you and good luck with whatever you decide.

Hi Anthony:

I can tell you about my experience with a J pouch. I had very severe UC and I try everthing: All the meds, diet, even accupuncture when I got desperate. Nothing worked and I was gettiing sicker and sicker.

I had two step j pouch surgery last June and in October I had my takedown surgery (ileostomy reversal). Words cannot express how happy and relieved I am with this surgery! I'm back to my old self pre UC days. Stellar bloodwork, I have energy, I can eat whatever I want and best of all no more nasty drugs! Knowing what I know now being on the other side of surgery, I wished I hadn't waited so long but hindsight is 20/20 and I was scared to death. In my opinion, you just kind of know when you are ready to make that leap b/c it is a big one. I was totally at the end of my rope. I'm glad the Remicade didn't work on me b/c that was the final clincher and I'm so much better off now.

Good luck to you in all your decisions...I know it's hard!

I use the bathroom an average of 3 to 4x a day with absouletly no urgency. On Monday I spent the entire day on the beach and I only had to go use the restroom once. There is no comparision to the feeling of having to go with UC. Right after surgery when it's all new I was going about 8x a day but it quickly slowed down. I know that sounds like a lot but there is no urgency so you don't have to make that mad dash to the bathroom. I can hold it as long as I need to.

Actually you have other options.  IVIG has saved me. 

thanks so much for your response guys, the surgery sounds more and more like a better route to go. I am an adult now and the decision can only be made by me but my mother is so terrified by the idea of surgery if something goes wrong. Using the toilet 3 to 6 times a day with no pain or urgency sounds amazing compared to how i am currently living.

i have never even heard of ivig but i'm interested to learn more. the same goes for LDN. The only problem is doctors here have no idea about that kind of stuff and offer absolutely no support. even though my medication doesn't work ( i am currently bleeding heavily) i'm still too scared to just stop taking it.

thanks :) i wish i signed up to this forum earlier because the support has been amazing already

Anthony...

It is not immature at all to be worried about ending up with a permanent ileostomy. It is an unknown to you and thus it is very normal to be concerned. My best advice is to talk to people who have gone that route and see how they are coping. Your surgeon can usually pair you up with someone your own age who has been down that road.

I have to admit that Dillon at first had a hard time accepting the ileostomy BUT, and I have heard this from others as well, by the time that the next surgery rolled around he had learned to cope so well with the ileostomy that it really was not that big of a deal anymore.

Summerstorm is a great one to talk to. She is a young woman who chose a permanent ileostomy over a J pouch. She is out living her life and loving it!

I know this is such a huge decision....just talk to as many people as possible so that you know all the pros and cons.