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Ulcerative Colitis
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Posted 12/15/2014 11:21 AM (GMT 0)
Long story short: Mildly flaring since Spring. Previously just taking Asacol and enemas whenever I flared. June 2014 started on Azathioprine. August 2014 Aza dose increased as was not at therapeutic level. October 2014 Realised I was not metabolising aza correctly and started on allopurinol too to help this. End of October 2014 contracted Cambylobacter and it flared my colitis really bad. started pred taper. 2 weeks ago told I was now at a good therapeutic level for azathioprine and should start to feel the benefit of it.

When I reached 20mg on the pred taper, the pain returned in one part of my colon and stools started getting slightly looser. Went back up to 25mg 5 days ago and still have pain on left side of colon where colitis is. My recent bloods showed no active inflammation in my blood (CRP 1) but I am yet to do a stool sample which usually is more accurate measure of inflammation for me. GI nurse told me not to increase my steroid dose but I went against her advice as I am pretty sure my colon is not yet healed hence the pain. She said pain is not usually linked with inflammation but I think it is. Btw the way no blood or mucus and BM's 1-2 a day. Stool is soft but well formed.

I am starting to taper my pred today by 0.5 for a few days. But I now a little lost. I don't know whether what I am doing is right with the pred and whether I do in fact have an inflamed colon or not?? The pain is getting to me and whenever I mention it to my GI nurse she just keeps saying that surgery will need to be considered if it does not calm down but then on the other hand she says there is no active inflammation in me. Because of her response, I do not feel like I can go to her any more because if there is one thing I am sure of, it is that I am nowhere near ready for the big 'S' not with such mild symptoms as mine.

I am even getting scared to hand in my stool sample in case it shows active inflammation and then she starts going on about the big 'S' again which only upsets me and stresses me out further.

Does anyone have any afvice re: pain in the colon? Could it be anything other than inflammation with no other symptoms? I was thinking maybe scarring or something. I have never had this. usually when symptoms go, I am back to normal with no pain.
Posted 12/15/2014 12:46 PM (GMT 0)
Could be. You may need a colonoscopy.
Posted 12/15/2014 2:45 PM (GMT 0)
Yeah I think I may do. I had one in June or July and nothing had really changed from the previous colonoscopy I had two years ago, apart where the colitis was once patchy it was now quite continuous throughout the descending colon. But still classed as mild with two moderate patches and had not spread beyond the left side, as before.
Posted 12/15/2014 9:14 PM (GMT 0)
No surgery before biologics are tried. No mention of them yet?
Posted 12/15/2014 10:04 PM (GMT 0)
I'm in the UK and they don't allow for biologics unless your disease is very severe and acute. I don't fall in this category so the next thing after immunosuppressants is surgery apparently. Which is ridiculous! However the guidelines changes yesterday where they have changed the eligibility criteria to moderate to sever disease which I might fall under if disease progresses .
Posted 12/16/2014 7:53 AM (GMT 0)
Sorry you're going through this. You've been posting throughout and it sounds rough.

First, pain is a sign of inflammation. When I'm flaring severely, I have severe pain. When it's a moderate flare, I have moderate pain, etc. That doesn't mean the pain isn't being caused by something else, but the fact that you improved with Pred, and got worse when tapering seems to indicate that it's UC. UC responds to Pred while c. diff does not.

I can't remember if you're on rectal meds now but hydrocortisone enemas are so helpful. I'll never go without them during a flare again. Even now, while I'm doing well, if I have a few off days in a row, I use an enema. It seems to get me back on track.

How do you feel about alternative therapies? The thing that has worked for me, twice, to get off Pred has been high doses of curcumin. I took six grams per day and saw improvement within a week. Since I'm allergic to mesalamines, it's my maintenance drug.

Others have had good results with qing dai.

You might also consider resistant starch. I believe that your flare started with some kind of stomach bug so your gut microbes might be off. Resistant starch can help and, as long as you start with small amounts, there really isn't any down side to trying it.

How does the UK medical system work with getting new providers if the old ones don't work out. Does your GI nurse have a day off? If so, you could call the office when she's out and start a relationship with someone else. Or maybe tell her straight up that you absolutely refuse to consider surgery before trying biologics and, since the policy has changed on biologics, she needs to tell you how to pursue that therapy. Tell her that if the push for surgery continues, you will complain to whomever you would complain to.

I also find that crying while at an appointment or over the phone can make a difference. :)

Sorry to throw a bunch of ideas at you but hope they're helpful to consider.

Good luck.
Posted 12/16/2014 8:48 PM (GMT 0)
It's absolute rubbish that we have to suffer without being acknowledged, my condition was more debilitating when my diagnosis was mild to moderate than it is now at moderate to severe. There are certain symptoms that accompany this disease that truly aren't constant, and those symptoms can make or break your quality of life. You know, for such a "civilized" country, your healthcare system is severely flawed. I hope you get better soon or at least have the chance to take the right type of medication. Best of luck.
Posted 12/16/2014 10:52 PM (GMT 0)

The Rock said...
It's absolute rubbish that we have to suffer without being acknowledged, my condition was more debilitating when my diagnosis was mild to moderate than it is now at moderate to severe. There are certain symptoms that accompany this disease that truly aren't constant, and those symptoms can make or break your quality of life. You know, for such a "civilized" country, your healthcare system is severely flawed. I hope you get better soon or at least have the chance to take the right type of medication. Best of luck.

Yep it is flawed you're right. It's all about funding streams and cut backs. In some aspects I am glad it's free and we don't have to pay for our healthcare (apart from through our taxes!) but on the other hand it is such a bureaucratic system. And how the hell they came up with no biologic treatment for only acute severe colitis is beyond me! It's like the rest of us don't matter. My doc even said he would have Ben able to treat my condition much better if it were severe with a course is iv steroids and then biologics rather than how it is now; mild-moderate and just pure stubborn! He is finding it hard to treat as it is too mild to be treated with stronger meds but is not responding to the lower meds anymore like mesalazine. So I am in limbo and having to suffer everyday not knowing what will happen.

However in the plus side.... The Salofalk enemas seem to be working a little as pain has subsided considerably today. Have also been on VSL3 for about a week now and that may have done something?? Let's see what tomorrow brings!
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