Update from beartooth ( a little graphic, but nothing we haven't read about before!)

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Veteran Member

Date Joined Dec 2006
Total Posts : 517
   Posted 9/16/2008 5:19 PM (GMT -6)   
Hey all, I've had a few changes in the past couple of weeks, aand I thought I'd keep those interested in what has been going on.  A month or so ago, I had the prometheus test which came back as negatvie for colitis and croh's.  Despite that diagnosis, I was having UC symptoms, so the doc and I set up a colonoscopy (third c-scope in two years, plus one sigmoidiscope, as well as a sigmidiscope, plus a copul;e of othe less intrusive porbe into my cavity. 
I had a colonoscopy last Wednesday, and the prep for it kept me pretty much kept my bms liquified for a couple of days after the c-scope.  First time for that.  I used the dulcolax/miralax prep, another first for me, and I was up two days straight with the runs.  Things started to clear up and i was bascially peeing out my my butt by the tail end of the treatment.  I still ended up missing a day of work or work because of extreme urgency, and (embarassingly) numerous accidents.  I got to the point that I camped out in the bathroom so I wouldn't have to run as far to find contained relief.
The scope came back as having colitis in the first 40 to 70 cm of my large intestine, and the intestine after that was scarred up and had pseudo-polyps from my long lasting C Diff infection a couple of years ago.  Lots of scarring from that trauma.  My symptoms prior to the scope included bloody, mucous, loose stool, extreme gas cramps, and any bm would create horrible stabbing pains in my lower abdomenEXTREME urgency.  After a weekend of suffereing these symptoms, my doc and I decided that a 30mg dose of oral prednisone, on top of the 6 VSL#3, and two tabs Liadla in the morning would be a start on the right track.  The biopsies came back showing I have UC (big freakin' surprise there), and my blood work showed an elevated level of amount of allergne antibodies, which eliminates my previous thought that I was allergice to Asacol,
It has now been close to a week, talked with the doc last night and we upped the Lialda to 2 tabs, twice a day, VSL#3 to 6 a day, kept the prednisone the same.  I'm not fond of changing some many meds at once, because it is hard to differentiate between what is working and what isn't when you make too many changes at once.  I've also kept a low residue diet, very bland, very little food intake, but maintaining nutritional balance by consuming V8 Fusion juice daily.
Based on past expereince with prednisone, it seems to help quite a bit, but it gives a false sense of security because once I start tapering off, symptoms begin to return.  Plus prednisone makes me grumpy, gives me the munchies, and since it works so well, makes my guts feel invincible.  I'm thinking that maybe dropping the prednisone, and letting the VSL#3 and Lialda work their magic before reintroducing the steroids.  One option is steroid enemas, but I'm not sure about the side-effects from that.  Perhpas Quincy could provide some knowledge on the subject to me
So that is where I'm at.  I'm able to function at work, crash at home, but still have numerous bms throughout the day regardless of my diet.  Social activities are not much of an option, but i'm a loner anyway, so I don't feel that I'm missing much.  Not trying to drum up sympathy, but I really don't have any friends where I live.  To get home from the c-scope, I had to hire a med transport service.  I have to admit I'd like some peple close by that I could visit with.  I'll be looking into support groups in the area soon to help broaden my horizons.  My work schedule makes it difficult o commit to any college classes, but when the time comes, I'll be putting some effort into taking  couple of fun classes,  The longer I stay away from people, the easier it is to stay away, and I've stunted my growth over the last 6 years by living in remote locatoin in Yellowstone NP, and spending month long trips travelling solo in the SO Utah desert.
Hopefully I'll be off the steroids soon before they really mess with my head, and I can find a good med combo that will keep me in remission,  My dos is super supportive, and I have faith that we will get this worked out soon
Thanks for listening to my update/rant.  Feel free to drop advice if you need to.  I'm always looking for ways to improve my well being.  I'll try to keepo people up to date with what is going on.

36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg

Post Edited (beartooth) : 9/16/2008 4:22:06 PM (GMT-6)

Regular Member

Date Joined Aug 2008
Total Posts : 327
   Posted 9/16/2008 5:48 PM (GMT -6)   
Brandon, what a couple of weeks! I'm in awe that you've managed to function at work through this. You must be exhausted, physically and emotionally. Hang in there...

I don't understand the part about the elevated level of allergen antibodies eliminating your thought that you were allergic to Asacol...

I hope your treatment continues to get you closer to remission, and that you can soon get rid of the steroids. Or maybe Cortifoam? Old Hat suggested that to me, and I'm interested in trying it.

My Prometheus tests came back negative for all IBD also, but biopsies show UC. So weird. We must have some different subspecies of the ailment.

Remember that you always do have people close by to visit with, we're just not physically near. Take good care, and rant whenever and as much as you need --
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 9/16/2008 5:49 PM (GMT -6)   
Hey Brandon, thanks for the update! I did the Miralax prep too a couple weeks ago and the stupid thing didn't start working until 9 pm before my 7 am c-scope! I'm glad that w/ your c-scope you got a definite diagnosis. (I've read that Prometheus tests are not always accurate)

I'm sorry prednisone is the only thing that brings relief. Hopefully the VSL#3 and Lialda will kick in and start working really soon. Side effects from steroid enemas are much less than the oral steroids b/c the enemas will go directly into your colon and not enter your bloodstream as much as the pred. I used Proctofoam (steroid foam enema) for two months and I did not have any side effects at all. I've been using Anucort (steroid suppositories) for the last week and a half and have not had any side effects.

As I mentioned in one of your previous threads, I know what it's like to a be a loner, too. All I did last semester was go to class and crash in my dorm room. At least I'm not a partier so I don't feel like I'm missing much of college life. I always thought that I would move far away from my parents, but until I'm in a stable relationship I think I'll stay w/in a four-hour distance of my parents! If you're looking for Crohn's & UC support groups, you can go to ccfa.org and look for your local branch. And those of us at HealingWell are always here!

Oh, and I drink V8 fusion too! (I find the regular V8 disgusting) I also like Minute Maid's Pomegranate juice.

Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort

Post Edited (ComedyDork) : 9/16/2008 4:52:03 PM (GMT-6)

Veteran Member

Date Joined Dec 2006
Total Posts : 517
   Posted 9/17/2008 12:05 AM (GMT -6)   
Emory and Comedydork,

thanks for the support. As I travel through this disease, and different treatments come to my attention, I get less and less averse to trying things, although I'm still not keen on suppositories or enemas. I just feel like things should only be one way out of my butt, but I imagine I'll get over that. I'll talk to my doc again on Friday and see what he thinks of the steroid enemas for me, because historically, prednisone turns me into Captain A-hole. At least that is what an ex told me, so I'm inclined to believe her. My doctor told me that there is a very low percentage of people who do not show the IBD markers in their blood after the prometheus test, but it seems like on this forum, there are an awful lot of people who don't have any faith in the results. Live and learn I guess. Until my scope last week, my doc was willing to go along with the prometheus results and assume I was IBD free, then farm me out to an allergist since some food allergies/intolerances can mimic colitis symptoms.

There's a real difference between being a loner by choice, and a loner by illness. When I was choosing to to spend all my time out hiking/backpacking/climbing solo, I really didn't miss people. I'd get my social fix at work, and then go disappear for the weekend. Now, I feel like I'm barricaded in, and it is a good day if I make it to a grocery store and actually make eye contact with someone. I have no problem chatting it up at work, so I look forward to going in, plus I like my job. Back when I moved away from my family, it was no big deal, because as long as I had my mountains, I had peace in my soul. I sort of wish that I lived closer to at least my immediate family, but I've finally feeling like I can settle in Denver, so I'm going to stick it out.

Comedydork, I think it very wise of you to stick close to family until you have some other source of support. It is difficult doing this alone, but luckily you and I have everyone here at Healingwell, and this is the greatest network of people I could imagine. Plus I told a couple of people at work about my recent health issues, and they didn't brand me with a scarlet letter and burn me at the stake. In fact, they showed concern, offered to help if possible, and even let me know about stuff they are dealing with as well. Weird how things work when you open up and trust people. How have you been able to attend classes? When I first came down sick, I missed the last three weeks of my last semester in school, and ended up having to make special arrangements for my finals. This was my second round of college, so I was living in my own apartment, and I just can't imagine going through UC stuff while living in a dorm. It always gives me hope to hear about others overcoming worse difficulties than myself...keeps me from feeling sorry for myself.

I'll check out those support group websites on the morrow, and I'm going to try the Minute Maid pomegranate juice. The V8 fusion is good (regular V8 is absolutely horrible I agree!), but I get a little bored with drinking the same flavors all the time. I have my own juicer, and I do make juice a couple of times a week, but unfortunately it is still cheaper and easier to just buy a few bottles of premade stuff.

I'll toast both of you when I get my next juice fix!
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg

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