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Ulcerative Colitis
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Posted 8/28/2016 1:55 AM (GMT 0)
Hello! I've been lurking here and there for awhile...of course when feeling well I try to forget about it all.

Just had a nice cry tonight...flare is breaking through Immuran, so I'm calling my GI on Monday. Figure I'll end up another round of steroids ( I know health is more important than vanity but I'm still struggling with my giant belly after I gained 45 lbs on prednisone last year...I've lost 5lbs only and its all in my stomach...) or yet another level up med. I thought finally had something that worked for me! I guess I need to do some more research and just do better!

A little background, I was diagnosed at the end of 2013 when I was 30..a few days after my birthday. I'd been sick since early fall but had to wait for insurance...the day it did went right to the ER. After a lot of time and appointments and scary antibiotics, I ended up on Prednsione and Lialda. It took them a long time to work but they finally did....for just a few months and then right back to it. I actually quit the Lialda, which I always suspected made things worse and lo and behold I improved. Things were great awhile, then a few moths later it starts again. This time I get Uceris and she convinces me to try Lialda again. Works great, I fade the Uceris, and stay on Lialda. A few months later I'm back again. Uceris again but this time it does nothing. So I switched to a GI at a teaching hospital. He did a lot of tests and checked blood counts and took samples no one had bothered to do before and put me on Immuran and Prednisone. I was scared of the Immuran, but I'd just had an accident while out with my kids so I was desperate. I didn't have any side effects to the Immuran and by February 2016 I felt great and I showed no markers on inflammation in my labs.

Guys seriously I thought I'd found my answer and so it's so disheartening!!! A few day sago I started noticing blood, and today I'm full on blood and mucous. I'm so frustrated right now. It seems like the worst flare ups happen at this time of year for me.

I take turmeric and probiotics but have always been overwhelmed by supplement choices and my doctors were not really helpful on that. Haven't noticed diet having much effect. When I'm in remission nothing bothers me, when I'm in a flare my best choices are avocado, rice, chicken (I'm usually vegetarian!) and applesauce. Eating anything thing bothers me in a flare though. I finally have a little extra money I had decided to go see a functional medicine doctor to get help with those things ( I have some mental health issues too)

My family is very supportive, but I just wanted to be heard by people who get it, maybe hear some good stories of outcomes. On a side not, hurt a nerve in my back at a workout class this morning...was told to just take ibuprofen. confused Like I can do that in a flare lol!

Here I sit, can't move, bleeding and hungry. It's just a trying day I suppose!!
Posted 8/28/2016 2:10 AM (GMT 0)
Sorry to hear you're struggling. Uc described in only a single word, then I'd pick the word "frustrating" for sure. It's curious that you're only on Imuran. Often being on multiple medications simultaneously produces the best results for us. So, it's common to be on both imuran and lialda, or to be on Imuran and remicade.

Are you just seeing blood? Or are there any other flare signs, like increased urgency or increased bm frequency?
Posted 8/28/2016 2:20 AM (GMT 0)
Just blood right now, some mild cramping and fatigue. A little bit of joint pain.

I had noticed a lot of people on several medications! Some that I've never even heard of from my doctors. I've been through 3 GIs after the first one pretty much ignored me when I asked some questions about med suggested on this forum, and the second one admitted it wasn't her area of specialty and referred to me the third who ONLY sees UC Crohns patients.

Thanks for the response. I feel better having just let it out a bit!
Posted 8/28/2016 2:30 AM (GMT 0)
amanda

Have you ever used mesalamine enemas? Using enemas in addition to oral meds helps many people, especially since you had a positive response to oral meds. The bleeding is in your rectal area so it makes sense to treat it right there. Get an RX from your GI. They aren't a cheap RX but are very helpful. If you need help using them there are several threads in this forum to look for.

Stopping the bleeding means healing the inflammation which should also mean fewer bad symptoms.
Also don't be hungry. Have some chicken broth and roasted chicken and mashed potatoes. Your body needs nourishment to heal.
Posted 8/28/2016 5:00 AM (GMT 0)
Hi Amandleigh,

Sorry you are going through a tough flare. Yeah, sounds like the Imuran is starting to fail, may be time to talk to your GI about another med. I didn't last long on Imuran, got pancreatitis from it. I'm on Humira and Balsalazide to keep my UC at bay.

Well anyhoo, yes, it's always good to vent, i totally get that. It gets old dealing with blasted disease..

Take care.
Posted 8/28/2016 12:06 PM (GMT 0)
When is the last time you had a colonoscopy or flex sig? I ask because while I go through long periods of no symptoms and my blood work shows no signs of inflammation, I still have flares. I get a colonscopy once a year and to date I haven't hit full remission. If my dr based my meds on just my symptoms and blood work I would have just stayed on mesalamine.

I know how it feels to have those symptoms return suddenly. It's devastating. Hopefully you'll find a perfect combo. For me, remicade and Imuran is the best so far.

I gained 40 lbs on last round of prednisone and like you only lost 5 lbs of it. It's so disheartening.
Posted 8/28/2016 3:40 PM (GMT 0)
It is awful when you think you have found something that works and then it fails you!

I agree that it sounds like Imuran is now not enough and so you will need to speak with your GI and see what he comes up with. I'm on prednisone at the moment and have started to put on weight around my middle, and so I totally understand how you feel, it's not being vain, and most women would not be happy with that.

Let us know what the GI says, and try to stay positive.
Posted 8/28/2016 3:54 PM (GMT 0)
When is the last time you had a scope? Maybe you can try rectal meds... I hate prednisone too and hope to never take it again. I remember after the last course, my face was covered in acne, and I was chubby, I was not myself. At that point, I was pretty confident that whatever happened, I would never use that drug again. You have a lot of options. I am sure the GI will bring up biologics, but I think you should find out where it's active and see if maybe the rectals would work for you. Most of us use rectal and oral meds - you should have been offered them a long time ago.
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