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Ulcerative Colitis
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Posted 2/17/2017 9:55 AM (GMT 0)
So I've been flaring. Did the prednisolone by pills. It worked for a week and stopped. I was admitted to the hospital to get the prednisolone by iv. That hasn't stopped the bleeding. They gave me infliximab yesterday for the first time. I don't know yet if it will work. The doctors say that if it doesn't work, I'll need surgery. I'm 33. What has your experience been with the next step after biologics? With surgery? I'm in Denmark and also wondering if I do need surgery maybe I should get it in the US so that I'm around my family when I recover. I'm down to 2-3 bms per day but they're bloody and liquidy and my inflammation levels haven't gone down much since I was admitted to the hospital on Monday. Today is Friday. I'd really appreciate your insights as I'm feeling a little scared at the moment.
Posted 2/17/2017 12:00 PM (GMT 0)
CharlotteR,

I am so sorry you are going thru this.

Have you noticed any improvement since the Remicade infusion?

I have Crohns disease, at first they thought it was UC. Some of our experiences will be similar and yet different. You will have options that are not available to me.

My first Remicade infusion occurred in the hospital. My bms went from 20 a day down to 8 after the infusion. I knew immediately after the infusion that it was working. The constant nausea and pain were so much better. I have a fistula that Remicade did not heal. I was on the Remicade for 1 year 2 months when I developed a soft tissue stricture. We dilated the stricture 2 or 3 times however the stricture came back and we finally had to do a colostomy. They left part of my sigmoid and my rectum so that hypothetically I can be reattached.

Surgery was challenging for me because I had complications. I can tell you that post surgery I feel better and my quality of life is much better. The learning curve was steep for me. The worst part was the smell while changing it--however M9 drops that you put in your bag help tremendously and after 4 months my smell changed. It wasn't as potent. The first 8 weeks I was glad there was someone there to help me. I am 56 so that will make a difference in recovery and viewpoint. Wearing a bag is no big deal. No one knows I have it unless I tell them. You can't smell it or hear the bag or see it. Now it takes me 10 minutes to change it...but I don't hurry.

There will be others along to give you additional life experiences. Ask whatever you need to and someone can usually answer your questions. Please remember that everyone is different so your experience may or may not be exactly the same. It helps to know what others have experienced and to be informed. This is the best place for that.

I will be checking in on you and wish you the best of luck. If you decide to come back to the US for treatment please research your insurance thoroughly.

Clo
Posted 2/17/2017 1:59 PM (GMT 0)
I hope the remicade works for you. I was able to attain remission on remicade, the only UC drug that was able to do this for me.

I'm not sure your history, but there are a lot of medications that you can try. Have you been on immunomodulators (azathioprine/imuran or 6mp)? Often immunomodulators are combined with biologics like remicade for best affect.

There are also similar anti-tnf biologics to try, like humira or simponi. There's entyvio (anti-adhesion) that's an entirely different class of biologics with an entirely different method of action.

There are also off-label biologics and clinical trials like stelara (IgG1κ antibody) and Xeljanz (JAK-inhibitor) that also use very different mechanisms of action.
Posted 2/17/2017 2:14 PM (GMT 0)
Thanks clo. I did the first remicade infusion 24 hours ago and while I still have blood when I use the toilet, I noticed a bit more stool than usual. I had 3 bm's 2 days ago before the remicade and 2 bm's yesterday - 1 before and 1 after the remicade. I haven't had any nausea or fever this whole time. I hope it stops the bleeding.

iPoop, I haven't tried immunomodulators. I'll ask about those. It seemed a bit fast to me that the doctors want me to start thinking about surgery. I thought that there were lots of options to try. They said that I might have to make a decision about surgery as soon as Monday.

I was initially diagnosed with UC after a sigmoidoscopy revealed inflammation in 2 centimeters of my colon in July of 2016. I had another sigmoidoscopy in November of 2016 and it was still 2 centimeters. I had a third sigmoidoscopy on February 1st and it showed that at least 70 cm of my colon were inflamed. I started prednisolone pills. They worked for a week and then stopped working.
Posted 2/17/2017 2:22 PM (GMT 0)
Emergency surgeries are sometimes needed when the patient's symptoms cannot be controlled through medications and there's sufficient risk of perforation and/or toxic megacolon (over 20 bms a day, high temp fever, pain, etc). However, with 2-3 bms a day it is hardy an emergency, so I'd definitely call BS on that. There are things to try if you're not suffering badly, as in your case. Even in the event that surgery becomes necessary, you should have months to choose the best surgeon and relocate back to the USA, if desired,

I reached remission by using all of the following medications simultaneously: Remicade, 6MP, Lialda, Rowasa, and prednisone. I had to throw everything at my god awful fare, and I'm a strong believer in throwing multiple (or all in my case) classes of the UC meds at the flare and see if that works.
Posted 2/17/2017 3:01 PM (GMT 0)
Thank you John. It seemed a bit fast to me to have to start thinking about surgery. They did clearly tell me that they don't think that I'm at risk for toxic megacolon. Also, I have no infections. I will do more research on the immunomodulators.
Posted 2/17/2017 3:29 PM (GMT 0)
the general point that after biologics there is surgery is true. it is next.

but, there are different biologics to try, and there are some combinations of immuno-modulators and biologics. if you can get more managed, you might be able to make some difference with anti-inflammatory diet or supplements like tumeric.

The urgency is generally when there are more than 2-3 bloody bm a day. The recommendation may be based on what they are seeing in the inflammation apart from symptoms. can't say, since I am not reviewing you whole case.

you may also be able to do a temporary surgery to get bowel rest, and get reconnected in 6 or 8 months.

so not exactly "lots of options" but a few variations of a few options that might be worth trying if you are not at death's door.

good luck
Posted 2/17/2017 5:32 PM (GMT 0)
The disease is unpredictable; I've know people who were diagnosed with UC and within 3 weeks of the diagnosis, they have surgery. Some cases are stubborn and fulliment. I had been in remission for 10 years, flared severely, battled that for 2.5 years and opted for surgery. That was 16 years ago; life with a jpouch has been the best for me.

Sue
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