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Ulcerative Colitis
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Posted 9/29/2013 5:02 PM (GMT 0)
I'm new to the forum, been dx with left sided uc in August 2012 (symptoms since June 2012). After 3 months of being treated and never meeting the doc only dealing with his asst, I decided to switch doctors. Anyway, one year later, I'm in the same flare, 60 lbs lighter, barely eating, taking supplements (calcium, d3, c, a, b6, slippery elm bark) and making about 20+ trips to the bathroom a day. I terms of meds, I'm on 30 mg pred, 3 asacol hd 2x day, remicade 10mg/kg. switched pred once to uceris with no luck, actually felt worse. Additionally, I'm being treated for inactive tb, and cytomegalovirus (tried valcyte first for two weeks now injecting intravenously the last 10 days).

My wife forced me to go to er last week for fever/chills. I was running a 102 degree temp and resting pulse rate was 130. They ended up keep ing me for two days pumping antibiotics in me but with no idea what they were treating.

My main question has to do with night time. I have tried enemas but cannot keep them in more than 2 minutes. I sleep for about 3-4 hours getting up every .5 to 1 hr before I get frustrated to the point where I am just awake and go watch sports center. Is this normal during a flare? The first 6 months or so of the flare were not that bad, but the previous months, I feel that I am really going downhill. Don't want to leave the house, irritable as all get out, and fatigued beyond belief.

Any recommendations would be greatly appreciated!!
Posted 9/29/2013 5:24 PM (GMT 0)
Hey Scrutch. I've been taking oral meds (Asacol now Delzicol) for 4 years and had been in remission but recently needed to take the Rowasa enemas to help me get out of a flare. People on this forum told me that the pills reach the beginning parts of your colon but fade out as their reach the lower left side of your colon where your inflammation is. The pills might be helping you a lot but you since your lower left side is still unreached, you still have all the crazy symptoms.

The Rowasa enemas have helped a ton for me because they reach the end part of the colon where the pills fade out. So you kinda flank the colon with meds. Anyways, the enemas worked for me, and when I say worked, I mean worked really fast. Try to hold it in longer each time. I'm sure people will post and tell you what to do. I'm a guy too so I know sticking something up there is nutzo! It still takes me like 30 mins to get it in there because I'm horrible at it. haha

*note* trying to update my signature - recently had a little gurgling and loose bloody stools - Started Rowasa again and things are back to normal!
Posted 9/29/2013 5:49 PM (GMT 0)
Wow sounds rough. Were your trips to the bathroom as frequent before you started the asacol and enemas? Just wondering if maybe you are intolerant to them and they are making things worse for you? Just a thought. Are you awake at night because of bathroom trips or just being unable to sleep? If its the later it because of the pred. I took all of mine first thing in the morning but still didn't sleep much. Was so happy to get off of it, hated all the side effects.

Also, have you had stool testing done especially for c-diff?
Posted 9/29/2013 6:51 PM (GMT 0)
Welcome Srcutch.

At the ER when they gave you antibiotics did they take blood tests to see if you had an infection/bacteria? There is a knee-jerk tendency to Rx antibiotics without finding out the cause and in the end that is harmful. Why? Because when you do get a big bad infection it might be resistant to antibiotics.

Not saying they were wrong but the only way I got better was by taking my healthcare in my own two hands and start asking questions, asking for certain tests and reading this forum.

You need to get off long-term pred. Also damaging to your health. Any doctor that keeps you on it is harming you. If you say you can't exist without pred then you need to talk to a surgeon and learn what your choices are.(BTW pred causes sleeplessness and anxiety).

Sorry to be so blunt but I feel I let my GI's string me along way too long on meds that did not work and I was too afraid to think that was true.

If you cannot hold the enema in all night then hold a small amount in as long as you can and keep trying to hold it in longer and a bit more enema every night. Make it a goal.
I hated enemas and didn't use them for years but you will find on this forum that mesalamine enemas are quite popular even with people that dont agree on everything. They work and can help you get inflammation lowered and get some sleep.

Start with enemas and then read lots on this forum using the search engine: fecal transplant, probiotics, diet modification, spinach and sunflower seeds, clay, and SCD Diet, lots more. People have had success with many different alternatives. Find what works for you.
Posted 9/29/2013 10:34 PM (GMT 0)
If you're admitted with UC around here, they are going to load IV abx, usually before they get a stool sample, and especially with a fever.

30 mg of Prednisone may not be enough. I've had uncontrolled symptoms on 60 mg.

Obviously you need to get your symptoms more controlled. I know you can't live like you are now, just survive.

Is valcyte hard on the gut? Most antibiotics are. You may have to just put up with it until you get your other infections cleared up, unfortunately. Can they prescribe an anti diarrheal?
Posted 9/29/2013 10:47 PM (GMT 0)
Your symptoms and medications are pretty similar to what I had when I started having surgical consults. Only you can decide what your personal tolerance is and when it's time for surgery, but for me, 20+ bathroom trips per day even with double dose Remicade, pred, antibiotics, etc was it. I was also incontinent -- sounds like maybe you aren't, that was definitely a big deciding factor for me.

The main thing that helped with the nighttime for me was spacing out my pred pills throughout the day (I took the first one around 5 AM and my last dose at 4 PM -- my GI said it screws up your rhythms too much to take any after 4 PM) and that helped my overnight symptoms improve a bit as compared to taking the entire dose in the morning.
Posted 9/30/2013 12:58 AM (GMT 0)
Try suppositories(hydrocort). Much easier to keep in. My gi suggested using them until some of the swelling went down then adding the enemas. Heck I even use suppositories at work with no problem
Posted 9/30/2013 2:38 AM (GMT 0)
My original flare sounds like what you're going through. Once I realized that mesalamine was continuing the problem, I stopped taking it and just stuck with pred and Remicade, eventually stopping the prednisone.
Posted 9/30/2013 7:28 PM (GMT 0)
Well after meeting with the infectious disease doc, we decided to stop the treatment for cmv and see if I notice a difference or if my increased bathroom trips and looser stool were side effects of the ganciclovir.

I am really considering the surgery option, for those that have had it or considering it, how did you go about finding a good surgeon to do the operation. My GI said he wouldn't recommend anyone here locally.

Thanks for all the info/advice!!
Posted 9/30/2013 7:39 PM (GMT 0)
"My wife forced me to go to er last week for fever/chills"

Your wife forced you to something?? Since when do you let your wife decide for you. Who wears the pants? ;)

Posted 9/30/2013 7:51 PM (GMT 0)
Scrutch,
My husband has been in a severe first time flare since April 2013. Have had extreme problems with getting a 'good' doctor- finally had to go about 200 miles away-- anyway, the best thing that came from new doctor (in August!) was a low fiber diet-- basically it has completely changed his life. By seriously following this diet (really an Atkins type diet), he is finally down to maybe 1-2 accidents a week.
He is on Remicade every 8 weeks now. Did take high doses of prednisone for about 4 weeks, but it had some severe side affects (glaucoma- loss of 85% vision in left eye) and didn't do much for him. Did have a surgeon state that colostomy 'might' be necessary if 'quality of life' is unbearable.
However, truly the low fiber diet made the most difference! Remicade is the extra aid. Oh, it really helped that we have very strong prayer support!
Good luck!
Posted 9/30/2013 7:56 PM (GMT 0)
Where are you in the US? Major cities (NYC, DC, Chicago, SF, LA, etc) and places with great teaching hospitals have great CRS surgeons locally, otherwise you'll probably want to travel to one of those places or Cleveland Clinic or Mayo. I'm in NY so my GI recommended a surgeon here. j-pouches are not a very common surgery overall and you want an experienced surgeon who has done hundreds if not thousands of procedures -- many people who get the surgery travel in order to do so.
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