To those who have had surgery

Hi all, new to the forum but have visited many times.

Have had severe uc for over two years now and back in a flare which I can't seem to get out of. Tried all sorts of drugs with little or no success and can't seem to get out of this flare I've had for the last month and a bit. Had my second remicade infusion yesterday and still bleeding. Just hope I'm having a delayed response.

These infusions are my last resort before surgery, which my docs have made clear is a very real possibility if I continue to bleed and don't start getting formed stool.

Just wondering if those out there who have had surgery, especially who have a j pouch, could express their thoughts about the benefits of surgery and living a supposedly normal life. I know there are some negative things like still going up to ten times a day because you don't have a colon but just wondering if there is anything you do e.g diet, lifestyle that you find helps?

Any advice etc if it does come to surgery for me would help. Thanks

Hi,

My son, Dillon, had pretty much the same story as you. Over two years he had three bad flares, each one worse than the one before. At the start prednisone worked like a dream and by the end was no better than water except for all it's side effects. To make a VERY long story short Dillon ended up having a colectomy and a J pouch built about 4 months later.

Even though surgery was a difficult, long road he now has his life back and under his control. His daily life is changed from his pre-UC days but this has just become his "new normal" that he has adapted very well to. His frequency is anywhere from 4 to maybe 8 times a day and is completely dependant on what he eats and drinks. He knows there are changes he could make to his diet to lessen his frequency but he really does not care. A trip to the bathroom is as easy as peeing. Do you know how many times you pee per day? I bet you do not. He is usually up once in the night and this is the only issue that he complains about. But again, it simply means getting used to it. For instance, I as a middle aged woman, usually gets up once a night to pee.....it is just life.

He has had his J pouch working now for over two years and there has not been any issues. We always have our eyes open for pouchitis, but we are also aware that this is usually very easily dealt with with a two week course of antibiotics.

I firmly believe that the surest road to an excellent outcome is having a very experienced colorectal surgeon. This is a very complicated surgery that has a lot of judgement calls that need to be made along the way. You want someone who has done a zillion of these operations. I would not let a general surgeon come anywhere near you. That is one problem with leaving things too long. If the worst should happen and you needed emergency surgery it is very possible that you might get a general surgeon.

I know this is a very hard decision and it is one only you and your doctors can make. Make sure that you get ALL your questions answered so that you understand exactly what you are walking into.

Whatever you decide I which you as much success as Dillon has had. If you have any specific questions we are always happy to share any part of our journey.

Cathy

I had jpouch surgery 11 years ago. Best heath decision of my life. I'm very physically active so the jpouch was a great surgical option for me. I backpack and do thru hikes in the 100-200 mile range. The best advice I can give you is to get a surgical consult with the TOP CR surgeon in your state. If you have to travel, it will be worth it. You can surgeon recommendations at www.j-pouch.org

Sue

I was in the same position as you. Remicade was my last resort. But give yourself at least 4 or 5 infusions to see if it works. It just didn't work for me.

I highly recommend j pouch surgery if you cannot get your UC under control. Life for me now is so much better. I'm done with UC for good and Im off all drugs. It's a tough surgery(s) to get through but it's really worth it all in the end.

I will give you a quick example: I just got back from a 5 night cruise to Bermuda. If you have ever cruised before you know that you do a lot of eating. I was able to enjoy all the dinners and goodies with out a single worry. I went out sightseeing on the island and I didn't once worry about where the bathroom was. I could never have done any of that with UC. I am so happy with my results.

You need a very highly skilled surgeon that has done many of these procedures. I think you also have to be ready mentally to make the descision to have surgery. I was just so fed up with it all. And I had exhausted all my options so in reality it didn't have much of a choice left anyway. Please let me know if you have any specific questions about it. Good luck with everything!

I concur with all those above. If I was you, I would start looking for a skilled surgeon now, so in case you have to make a decision quickly, you are prepared. I traveled to the Cleveland Clinic...best choice I could have made. I am a little over a year since take-down and am happy. The first year was hard, I'm not going to lie. I think I had a bit of PTSD--I thought about my j-pouch all the time and thought about how many times a day I went and was terrified something was going to go wrong. I was a little obsessed. I really never had any complications, except hemmies (which I also had when I had UC). Now, I really don't think about it much, except when I have to go (which is around 6 times a day). I don't usually have to get up at night. If I do, it is often because I have to pee and I empty my pouch then, too. I am going on a cruise this summer and am so excited. The last time we went on a cruise was 6 months before surgery. I was so stressed because I had to make sure there were bathrooms everywhere we went. I don't have to worry about that now.

The only medications I take now are OTB immodium. I take 1 pill in the morning and one at night. If I am going out, I usually add another pill.

For me, this was a great decision. I was always hoping the next medication would work, or was looking for the miracle cure, or that I would suddenly be better. None of those things happened. So happy I am off that rollercoaster.

Good luck and research surgeons. It will make you feel better just because you will feel a little more in control of this awful disease.

Probiotic said...
Something to ask your surgeons during a consult- I consulted at Mayo and was told that they insust on 3 steps for patients who have been on biologics, as I was at the time. Supposedly a huge reducion in the chance of sepsis! Not sure if they are saying this at places like CC too- would be good to compare notes. It threw me for a loop but of course if/when the day comes I will want to follow best practices. Best of luck.

Interesting. I was on Remicade for a year and then had surgery when it didn't work but I was still able to have my surgery done in two steps. I suppose all surgeons have their own way of going about things. My surgery went very smoothly despite me being so ill going in and being on all those drugs.