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Ulcerative Colitis
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Posted 10/13/2013 2:18 AM (GMT 0)
Hi, I've had UC for 13 yrs. I can usually get my flares under control with flagyl. This flare is different.To make a long story short. I ended up in the hospital for 4 days in mid Sept. I left feeling better and taking 4 Lialda (have been for years) 3 50mg Immuran (started over summer), 50mg Zoloft (started Aug), 60 mg Prednisone, Bentyl 20mg. (As needed Xanax .25, Percocet avoiding them now because constipation is on the verge.)

I have been going to work for the past 3 weeks but the pain is still here. My Dr. and I agreed that it is time to add more meds and I will start Simponi hopefully this upcoming week or next.

At my 2 week my Dr. had not received by bloodwork and told me to hang in there for Simponi to get approved. He called me the next day and said that during the hospital and before my SED rates were 24 then 48 but that they had gone down to 12.5 and was looking good. He said my IUD looked weird in the cat scan and it could be going through the uterine wall and that would feel like colitis pain. I went to ER and got another cat scan and ultrasound. The IUD was in the wrong position, but not through the wall. They took it out and no change.

What else could be going on???? Everything seems to be better but the pain. Someone mentioned campylobacter, should I go in to ER tomorrow and have that tested? I don't know if my dr checked that or not. At this point the pain is so bad I don't know if I can work on Mon. and I really can't miss more work. By the way, I am down to 40 mg Predinsone and am supposed to go down to 30 tomorrow. (NO change when I dropped from 60 to 40). I really don't feel like eating and am trying not to get constipated from all the pain meds from ER on Thurs. Yesterday, I was constipated but got it moving again with lots of water and stool softener. I have been having 4-7 bms a day. Almost all of them are VERY loose, like flakey.

Thanks to all who reply.

Post Edited (reneenic) : 10/15/2013 4:29:59 PM (GMT-6)

Posted 10/13/2013 12:31 PM (GMT 0)
I can't answer your questions but I am curious. Why would your doc start you on Simponi and not Remicade? Remicade is already approved for UC.
Posted 10/13/2013 2:08 PM (GMT 0)
Welcome to the forum, renee.

In one part of your post you talked about being concerned about constipation, but then you say that you are having 5-7 bm/day, and they are loose. I am confused.

Has your DR checked your metabolization of the imuran?

What exactly is the pain that you are struggling with?
Posted 10/13/2013 2:28 PM (GMT 0)
Hi, I've had UC for 13 yrs. I can usually get my flares under control with flagyl. This flare is different.

Flagyl helped me too but I only took it once to end a flare. I suppose if I enter into a major flare again then I might have to take it again but I am afraid that, like most meds, it will lose its effectiveness over time.

If an ANTI-biotic like Flagyl worked for you in the past then perhaps you, like me, will be responsive with PRO-biotics. They probably won't cure your current situation but I find that taking them every day is helping me remain in remission. Perhaps they will help you stay healthy once you get out of your current flare.
Posted 10/13/2013 2:30 PM (GMT 0)
Sherry, we discussed humara, which I wanted before remicade. (I just don't want to use my remicade card yet since it only works once. I feel like my uc is not to that point yet.) We decided simponi together. He said he has seen very good results from it.

Kazbetn I know that's confusing. With pain meds and prednisone I feel constipated. I have to really work at drinking enough to be able to keep things moving. They are moving mostly at night but it is loose. If I don't drink enough, I just don't go and the abdominal pain gets worse. I have horrible abdominal pain that will come and go and while going to the bathroom. I have had the routine bloodwork done for imuran and everything was fine. I have been on imuran in tje past and was fine with it.

I ended up coming in. They took blood and stool samples. I won't get results until tomorrow for stool tests. So I guess I wait.
Posted 10/13/2013 2:32 PM (GMT 0)
Babe in the woods I forgot to mention those, I do take them. Not sure if they do much for me, but can't hurt, so I take them.
Posted 10/13/2013 2:43 PM (GMT 0)
What kind of probiotics do you take? There are hundreds of different kinds and just using the word probiotics doesn't mean much. Many, many probiotics are nothing but the proverbial drop in the bucket and pretty much worthless. You have to get serious with probiotics. No drop in the buckets.
Posted 10/13/2013 3:43 PM (GMT 0)
So it sounds like your horrible abdominal pain might be spasms. Has the bentyl helped at all with that?

When you say you "feel constipated" what does that mean? More cramps? How long have you had to wait for a bowel movement while on these meds?

From webmd:
You are considered constipated if you have two or more of the following for at least 3 months:

Straining during a bowel movement more than 25% of the time
Hard stools more than 25% of the time
Incomplete evacuation more than 25% of the time
Two or fewer bowel movements in a week

From what you describe I think the term "constipated" is not quite right, although maybe what you are saying is you have incomplete evacuation??

I've struggled with infrequent bowel movements over the past few years and while my GI says I'm constipated, my stool was never ever hard or difficult to pass. It just seemed like my colon would stop pushing the stool down for a day or so, and then go into overdrive to empty out after I'd gotten too far behind. It was quite annoying. Adopting a gluten free diet has helped a lot with this, but it is not gone. I now take psyllium to help bulk my stool and that keeps me more regular. Maybe this is an option you should consider also. Psyllium also may have the benefit of acting as a PRE biotic, providing good fiber for beneficial bacteria to feed on.
Posted 10/13/2013 4:29 PM (GMT 0)
I'm taking VSL#3 probiotics.

Bentyl helps take the edge off a bit. Yeah, maybe constipated is the wrong term. Just feels like it I guess.

In Er now, Sed rate came back in the 60s. Gonna see how tests come back tomorrow.
Posted 10/13/2013 5:07 PM (GMT 0)
VSL is a serious probiotic.
Posted 10/15/2013 10:29 PM (GMT 0)
Update: All tests came back negative. My Sed rate is now 62. I just found out my insurance denied the Simponi (must try Humira first). So the Dr. is working on getting Humira by the end of the week. Can anyone let me know what to expect? I'm not worried about the shot part. What are some of the side effects, if any? Did it work for you? How long has Humira worked for you? Thanks everyone.
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