Total Colectomy in Children

Hey everyone this is my first post on HW. I was diagnosed with ulcerative colitis just after I turned 14 in March 2016. Initially, I was given just Pentasa (Mesalazine) which kept everything under control for about a year. At the start of 2017 I began to have bloody stools and severe pain again so I was given Prednisone 60mg. It was not very effective and took a long time before things came back under control. Once everything was under control I was tapered down over the next 2 months and was able to return to school. However, I flared again shortly after prednisone was stopped and was given 60mg prednisone again but this time I did not get better and remained in a flare for most of the year. I was commenced on Azathioprine and there was still not enough improvement so I was commenced on Infliximab. After a few Infliximab infusions I began to feel better and was in remission for about the last 2 months of last year. I did not go to school for most of last year and was either in hospital or at home. My Prednsione was weaned off and I was off steroids for a month or two. I then flared again in January this year and was put on steroids again but this time it seemed to work miracles and I was back in remission within 3 days and was able to wean off over 6 weeks and I was able to go to go to school again. Then I was hit with a C Diff infection which I think put me into a flare again. I was treated with Metronidazole and put on Prednisone 40mg again. Once the C Diff was treated I felt better and began to wean my prednisone to 20mg, which is where I am now. I am able to go to school but only by taking 30mg of codeine in the morning otherwise I will probably poop myself. Also I live In New Zealand so Health Care is completely free. I have a meeting with the surgeons in a week. Surgery has been brought up many times and I feel like I am now ready for it but I just had a few questions. (Also it will most likely be a Total Colectomy where my entire large intestine is removed and have a temporary ileostomy bag.)

1. Once the large Intestine is removed and you have had your reversal to create a J pouch, does the Small Intestine compensate for the lack of absorption of water? will my Small Intestine start absorbing more water or will I have to drink a lot more water to stay hydrated as most will not be absorbed?

2. I am 16 and this disease has already affected my life immensely. Will I be able to go to school with an ileostomy bag?

3. Should I be more worried about this surgery compared to an adult as I have much more of my life ahead of me so I have more risk of getting complications?

4. Since I am young will my body be able to adapt and grow to the sudden removal of my Large Intestine?

Sorry for the Big Post there was a lot more I wish I could of said but I tried to keep it as small as possible. There was not much information for younger patients getting a colectomy so this is why I asked
Thanks

I have a friend whose son was about your age when he went through the same ordeal and ended up with a j-pouch. Doing very well 10 years later. Generally it is easier to recover when you are younger.

You can certainly go to school with a bag. There are more people than you realize walking around out there with bags, including some kids.

That said, if the infliximab stopped working, there are some other biologic drugs out there that are effective for some people with UC. Some people try lots of different drugs before going with surgery, sometimes successfully and other times not, and others go straight to surgery.

Best of luck!

Hello & welcome. What do your parents think about your options? Just curious... It sounds like you've been on quite a whirlwind for the past 2 years, and I can definitely understand wondering about surgery. It has been a short period on the other hand, so you definitely want to do all your research, and make sure you seek all other alternatives before accepting surgery. Have you been rechecked for pathogens since the last c diff infection? How many scopes have you had and what did the pathology show? Have you had an upper series? There's actually another member here, who is from NZ and had surgery about a year back. I think his whole schedule ended up getting pushed back and he just recently got reversed, but his username is ki-wi /www.healingwell.com/community/profile.aspx?f=38&m=3465579&p=214199. I am goign to alert him to your post and see if he's around to say "hi".

To answer your questions:
1. The pouch is made of the end part of the small intestine which has some properties similar to the large intestine. It will never absorb as much fluid as the colon, but it gets better over time. I am not too careful to stay hydrated at this point, I know I should be, but it hasn't been a problem for me. You will go to the bathroom more often since output will not be compacted like it is in the colon.

2. I didn't really let the appliance hinder my life too much. I would think a little about what to wear, but I basically wore my normal clothes without issue. If the bag is full of air or output, your shirt can look fluffy. In your case it sounds like it would be temporary, so any inconvenience, would only be for a few months.

3. The procedure, while fairly well-tolerated, can have varied results. They say 90+% of people are thankful to be done with UC, and live a very full life, occasionally you see people here and on j-pouch.org who are unhappy with their results. There are risks, but there are also risks of living with UC and there are risks of the drugs.

4. Having surgery younger seems to provide better results from what I've seen. People who have surgery younger, often move on free of drugs, doctors, tests... and never turn back. We've had so many parents here with children who had surgery, and the kids moved on. Some of the parents have come back to say hi, but it's generally a happy ending.

I hope you find something that works for treatment.

You seem to have good and consistent answers to your questions.

To follow-up suzy-q's point, if you are not in a life-threatening flare, you might try at least one other biologic in a different class, and consider if c-diff has been more involved than you think.

It is a little unusual (but no impossible) that you fail to respond to pred at high dosage, and later respond. One thing failure to respond to pred often means is c-diff infection. Since you had one later, I have to wonder if you did not have one earlier that did not show up on testing. (False negatives are very common).

If you have time, you might try a non-TNF class of biologic, and also try FMT for the c-diff. I suspect losing school years is a big problem, and may people have a good life after surgery - so I cannot say what is right for you at this time. Just wanted to mention these ideas.

good luck