23 Year Old, UC for 2 Years, Tried Every Med Apart From Vedolizumab. Surgery?

Hi everyone, i have come to the forum for some advice. As you can see from the post title i have had a very stubborn case of UC for 2 years. I was diagnosed with left sided colitis in 2013, unfortunately no medication (even steroids) have gave me complete remission! The closest i have been to remission is formed stools, but still with the dreaded urgency (even with the use of countless different types of enemas!).

I am currently at a stage where i am going at least 20 times a day, mainly in the mornings. And haven't been to organise any social activities or holidays for the time I've had this disease (as a 23 year old this has been very hard!) Mesalamine and Azathioprine have both been attempted with no success. I started my first remicade infusion the end of March and after 3 infusions I have seen basically no change in my bowel habits, I'm due for my 4th in 3 weeks time, not giving it much hope however.

My gastro completely understands the situation, and has stated that vedolizumab should be available for use, late July early August. However the longer this has went on the more i am thinking is it worth opting for J pouch surgery, so i can start to look to get my life back! There are no guarantees that vedolizumab is going to do anything for me, and even if it does do i really want to be taking a drug for the rest of my life. On the other side of the coin do i wait these next 2 months, (which are going to be a long 2 months as i am in pain each time i use the bathroom due to low rectal inflammation) and give it a go and keep my colon.

On a side note i have tried diet modification however that also has had no prevail...And with losing nearly 2 stone its hard to adhere to strict diets!

I know ultimately it is my choice, and i thought when i was diagnosed i would never want surgery at my age, however i honestly believe i am starting to sway in the favour of it, as my quality of life is at an all time low. Any input would be extremely appreciated, has anyone been in my situation where nothing has worked? especially from you J Pouch users! :D

Thanks for reading

Anthony

Thanks for the reply notsosicklygirl (nice name ha). How many infusions of entyvio have you had, and what symptoms are you still showing? I have said to myself i would only be happy taking a drug for life if it puts me in 100% remission (not "yeah I'm better than i was before, but still showing symptons") so this is why i am thinking lets just get this darn diseased colon out and start to move on without you ha!

However i do have the same concerns as yourself in terms of surgery as it is irreversible and there is no going back whether good or bad outcomes! But on the other hand at least with surgery you can have more control, and it seems like many people are able to adapt to the problems that occur with surgery as it can be predictable, unlike our colons who have a mind of their own!

In terms of other TNF blockers and antibiotics , no i haven't tried any different types. I have a colonoscopy booked for the start of July.

Would you look towards surgery if entyvio fails to give you 100% remission?

I am on my 4th infusion. One of the problems with entyvio is that it can take a while to work. I am definitely not 100% and I am not sure whether things are going to get better or worse but if i stayed how I am right now, I could live happily. My problem is wondering what the future holds. I don't want to be held up from living life, traveling, going to events... I hate that i have to think about the "what ifs" all the time. I can't make plans becasue i never know whether my health will be acceptable. I don't want to live my life like that forever. At this time, the only way around that is surgery. I have considered it a lot and I even went on a surgical consult. I feel like having surgery when you're only going a few times a day is sort of crazy, but it's probably not. I mean, it's the unpredictability that really gets me. I Just worry that I am not a good candidate for a pouch (I've been told by a GI) and I don't want to be a slave to buying supplies and emptying a bag 10x a day. I notice people after surgery often are still worrying about what and when to eat... It's not ideal. Having UC is not ideal. It's really a no win :( I do however know a few people who have gone through the surgery, and like Gary said, they only regret not doing it sooner. I also know some who wish they didn't do it so that weighs in.

Sorry, i feel like my advice is not helpful it's very hard for me to wrap my head around it as I am in the same place.

I completely understand, we seem to be struggling with the same questions! The same thoughts are in my mind also, wondering what the future holds. What happens if i wait for vedolizumab, it works for a while then stops working and i am back to square one again. I dont know if i could handle it, i am going to speak to a surgeon within the next few weeks, and hoping to speak to some J pouches around my age to get a sense of what it like living with one. I just want to be able to control my bowels again!

Your advice has been very helpful don't worry! :D

I have also considered surgery in the past but I don't think that is the right path for me. As other have said j-pouch/colostomy bag bring their own issues, though these are often far less than uncontrolled IBD.

For me the biggest reason for not getting surgery is the future - over time IBD treatment has improved and will continue to do so. I know I would regret it forever if I got surgery and then as time goes by I realised that, if I had held on for a few more years, I would have had more options available to treat the condition. With medication/treatment plans/supplements etc you can always make changes, surgery is an absolute, no going back.

I had pan colitis that I couldn't get under control. I was in a five year long flare. Nightmare! I tried every drug with the exception of Humira. I was totally fed up by that point and opted for j pouch surgery. That was five years ago this June 25th and it was the BEST thing I could have done. It was a rough journey but one I'm glad I took. I couldn't go on going 20x a day with the blood loss and urgency I had plus incontinance. For some of us the meds just don't work. Why? Who knows but I'm grateful everyday that I had the option of this procedure. Please feel free to ask any specific questions about it if you have any. I'll try to answer the best I can.

Thanks for everyones advice its really appreciated. I have got a lot of thinking to do, but i must admit i am not scared of surgery, as i am starting to realise it may be the best way to get my life back. Although its something i never thought i would say.

I understand there may be other options out there, however I'm starting to become very tired of spending my life looking for ways to keep the illness at bay, with no guarantees its going to keep me in remission for the rest of my life. I dont want to spend the rest of my life worrying, "what happens if this stop working? What will i do next".

Thanks pb4, like i have said, i never thought it would come to this. But i am ready, there are pros and cons on both sides. And at least with surgery they remove the bit of the disease that gives people the most problems (i understand it doesn't completely rid you of other factors of UC). I appreciate people have different views on surgery, and some people are willing to give medication and other means of keeping the disease at bay. But deep down i have made my choice.

Anthony,

The most effective med for Flares is Cyclosporine, sometimes it is used to get the UC patient healthy enough before surgery. Have you tried Cyclosporine? I've used it twice and it works within a few days.

I had surgery about a year ago and I feel better then I've felt in years. I have chronic pouchitis which I need to take antibiotics for but I don't even notice it; my pouchitis symptoms are nothing like UC flares. People worry about Chronic Pouchitis when making their decision to have surgery but from my experience it hasn't effected me except for needing to take antibiotics. I empty my pouch 3-5 times a day

Anthony I'll chime in too. I had my first surgery a year ago Sunday, which I plan on celebrating! While having 3 surgeries in one year was not easy, I am very happy with my jpouch. I definitely have my life back. I understand being tired of being sick and tired. You could always go talk to a colorectal surgeon to see what they say. I know it is not an easy decision to make. I had no choice as they said it looked like a bomb went off I my large intestine and no medicine would fix. Just be sure you go somewhere that has a done a lot of these procedures.

Notsosicklygirl,
If the time ever comes, you'll know in your gut. (No pun intended). It took me quite a while to come terms with having surgery. I was really stubborn! But in the end I just wanted it to be over and I wanted my life back. And my family wanted me back too. I had to think of them as well not just me.

I believe this has been used in several different places, including the UK, on a very limited basis but it's success rate was close to zero.

Here are some links you might find enlightening:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2981852/ (Table 2 is especially informative)

http://www.nice.org.uk/guidance/ipg126/documents/interventional-procedures-overview-of-leukapheresis-for-inflammatory-bowel-disease:

In one randomised controlled trial of patients with ulcerative colitis, 74% (29/39) of patients treated with leukapheresis had an “excellent” or moderate” improvement, compared with 38% (14/37) of patients treated with high-dose steroids (p = 0.005). In another small randomised controlled trial of patients with Crohn’s disease, 100%. (12/12) of patients treated with leukapheresis were successfully withdrawn from steroid therapy, compared with 66% (10/15) of patients who were not treated with leukapheresis (p = 0.074)

https://www.ecco-ibd.eu/index.php/publications/congress-abstract-s/abstracts-2011/item/215.html Results: Of 18 patients; 14 patients responded (n = 14 77.8%) to treatment with Adacolumn. Remission was seen in 13 of 18 patient (n = 13 72.2%)

While these sample sizes are small, they do not reflect your close-to-zero success rate

Post Edited (gavin92) : 6/5/2015 8:23:03 PM (GMT-6)