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Starting Antibiotic Therapy - NEW POSITIVE UPDATE

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Ulcerative Colitis
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Posted 8/25/2011 1:24 AM (GMT 0)
InSoFla, Will do!
Posted 8/28/2011 3:56 PM (GMT 0)
Latest Update - Day 5 post-antibiotics.

My frequency is still high at 20+ a day. BM's vary with some formed, soft-formed or loose. No D, and still no blood.

I am having a hard time because I am up every night every hour to use the washroom. Very tired.

I was thinking of tapering the pred today, but I've now decided not to. I can't take the chance that things will increase even more! I'll give it a few more days and see what happens.
Posted 8/28/2011 8:25 PM (GMT 0)
I am so sorry panda. I hate when I can't get any sleep. That's the worst!! Things will improve. Have you tried 6mp or Imuran? I think my antidepressant has helped me a bit, perhaps that is something worth considering? I've heard Wellbutrin can help some people with IBD. I take Pristiq for migraines and since I started it, my UC has been behaving.
Posted 8/29/2011 1:37 AM (GMT 0)
Mom2Panda,

From your symptoms, it sounds like you may have severe inflammation in your rectum and possibly sigmoid. If the inflammation was higher up, you would most likely have watery diarrhea. Now may be a good time to add rectal meds to try and calm things down there. Have you tried hydrocortisone enemas? If your inflammation is mostly lower left side, you get a bigger bang for your buck with the enemas than you get with the oral pred since you get the topical effect too.

I had similar symptoms to you where I had formed stool, but was going a lot (up to 15 times a day some days), although I slept through the night mostly. I would have my BMs in clusters where I could go several times in one hour.

You should be taking probiotics too now that you have killed off most of your gut flora.
Posted 8/29/2011 10:32 AM (GMT 0)
Hi mom2girls,

I hope you are feeling better..
You mentioned "My diet was not great over the weekend"
What does your diet include? You eat anything you want?
May be diet should also be followed with the combo..

Regards.

bleda..
Posted 8/29/2011 6:30 PM (GMT 0)
I did the antibiotic treatment, I noticed a small improvement in my well being. More energy, but not too much changed with my bloody, smelly stool. When I was on the abx  the smell of my stools were gone, but now have returned. and it's bad!

I just finished a three day course of anti parasite medication. I'm having lots of bubbling, gurguling in my gut and explosive bathroom, but today I noticed after I ate I didn't run to the bathroom with bloody, diarreah with skin in it. I feel my inflammation at my rectum is down as well.  Hopefully things are changing. I took my last pill this morning so I will see how things progress over the next couple of days. I have lab work to do, CBC, stool, etc.

If I did have have some type of worm/parasite they are ususally naked to the eye, although you mind plays tricks on you and you think you see things you want to see in the toilet. I'm sick of looking at my poop! LOL

Posted 8/29/2011 9:30 PM (GMT 0)
Thanks everyone. I am taking probiotics to replenish the flora.

I have not started with enemas again as they did not work in the past, and I have never been able to hold them. Notsosicklygirl - I have tried Imuran and couldn't tolerate it.

So, here is the new update....

I am beginning to wonder if that 20+ times per day was more of a "IBS" thing (or maybe a PMS thing), so yesterday I switched back to the high fibre diet that I was on prior to UC - which includes 2 tbls of metamucil at night. I was still up a lot last night, but today has been MUCH better so far. I went 6 hours without having to use the washroom! I haven't done that in a long time. I had some serious urgency this morning for my first few BM's but since then, I have only gone once, and it was while urinating, so no urgency.

I am as confused as heck, but I'll take a good day when I get one. I'll see if THIS pattern lasts, and then try tapering my pred again.

Either way, I have benefited from the therapy somewhat as my stools are better, I still have no blood or mucous.

I just really hope I can sleep tonight. Anything more than 2 hours in a row would be welcome! LOL

Fingers crossed!
Posted 8/30/2011 12:21 AM (GMT 0)
^^ Psyllium once again works wonders. Psyllium husk powder is the active ingredient in Metamucil. If you strip away all the crap they add to it, that's basically what it is.

Psy seed powder does wonders for me, and some others on here too.
Posted 8/30/2011 12:48 AM (GMT 0)
I have to agree badslinke....psyllium seed is a great thing to add to your diet!
Posted 8/30/2011 5:05 AM (GMT 0)
Mom2Panda,

Yeah, your symptoms are kind of weird. Going that many times without diarrhea, blood or mucous would be unusual for U.C. If your rectum were inflamed enough to cause that many trips to the bathroom, you would expect some mucous and blood.

Did you have blood and mucous before taking antibiotics?

I agree with everyone about psyllium husk powder... wonderful stuff. Gives you fibre without any irritation like you would get with whole grains and such. It is also a good growth medium for helpful bacteria.
Posted 8/30/2011 10:34 PM (GMT 0)
Yeah, I know they are weird. Yes, I had blood and mucous before the antibiotics. So, I at least attribute the lack of those symptoms to them.

Today was a pretty good day too. I am going to give it 2 more days, and then taper the prednisone.

I am also going to start the dreaded enemas again. Maybe I can keep them in now, and they will help with tapering of the oral prednisone.

Will post more updates as they happen. Hopefully, things will just keep getting better.
Posted 8/31/2011 12:00 AM (GMT 0)
I am still tapering the enemas, trying to get off them completely. The funny thing is now I can squeeze them in as fast as they will go without the immediate urge to purge that I would have when the rectum was inflamed. I stopped the mesalamine enema cold turkey (I would never recommend to anyone else to try that!! very risky) without any noticeable change in symptoms, but I have to be more careful with the steroid one because stopping steroids abruptly after long term use can be downright dangerous, if not life threatening.
Posted 9/1/2011 7:54 PM (GMT 0)
My Dr got me in for a flex today at the last minute. He wanted to see what was going on after the antibiotic therapy, and before I see the surgeon next week.

I have severe inflammation up to 35 cm, but things look good after that. Explains why I have urgency issues. I did start to see blood again too in the last couple of days.

The resident said it was good to try it, and that the antibiotics may have killed off some irritants, but that it obviously didn't do anything for the UC. :((

Dr. is trying me on another type of enema (Bentnosol) and a round of Biactin (sp? another antibiotic). He said he has had success in a couple of patients with both if these.

He also wants me to start my prednisone taper at 5mg a week.

In the meantime, I will proceed with surgical arrangements as I expect to have to wait for a couple of months, and if things get better in the meantime, then I can always cancel the surgery.

So, I guess I can add antibiotic therapy to my "failed" list. :((
Posted 9/1/2011 8:13 PM (GMT 0)
Hi mom2panda,

Is the antibiotic the doc is putting you maybe called Biaxin? I was on that for a sinus infection for just one week and it was SO BAD for my UC, my GI ordered a colonoscopy to check for C-Diff(turned out I didn't have C.diff, just a lovely UC flare brought on by the Biaxin). Not fun at all. Beware of that. Though you have been on antibiotic therapy, so maybe this isn't such a issue for you.

Sorry to hear the antibiotic therapy didn't work for you, you certainly gave it a good try while not feeling well! Thanks for doing this thread, it was very interesting to read your progress, and good to see your doc was open to it.

I am in a similar spot, I am just about to try my last drug before seeing a surgeon--Cimzia--and I can't get off prednisone either. Please keep us updated as you go through all this for your sanity and for those of us in a similar place.
Posted 9/1/2011 9:25 PM (GMT 0)
Biaxin (Clarithromycin) is was gave me U.C. in the first place. Personally I will never touch the stuff, but who knows, your situation could be different.

M2P, how high did the inflammation go before you took the anti's? In other words, is there less of your colon involved now? That would be some good news as now you could focus on using rectal meds... if you can retain them.
Posted 9/2/2011 8:04 PM (GMT 0)
Well, since I am already flaring, hopefully the Biaxan won't make it worse.

CGK - I am not sure how high the inflammation went. When I was first dx'd (Sept. 09), it was as far as they could go (50cm). After months of prednisone, when they did the colonoscopy (June/10), my colon looked completely normal. They did another flex in Sept/10, when I was on a lower dose of pred, with only minimal if any inflammation.

I finally went off prednisone in Dec/10 and went on Remicade in Jan/11. I had a flex in Apr./11 and I was too inflamed to go any further than 10 cm. It was a mess, and I was in too much pain.

Back on pred in May/11, 2 more rounds of double-dose Remicade, and then the antibiotic therapy, and I now I still have this nasty inflammation. It was much worse than I had ever seen before (having not seen hardly anything in April).

So, I am not sure what helped to bring the inflammation down from 50+cm to 35cm, but based on my history, I think it was/is the prednisone. I am sure if I went to a higher dose - like 60mg - then the bottom end would heal too.

Anyway, starting the enemas/antibiotics today. We'll see how it goes.
Posted 9/3/2011 1:27 AM (GMT 0)
M2P,

Hopefully the rectals help. Much fewer side effects for me from the steroid enemas when compared to oral pred. Rowasa (or generic) have no side effects for me.
Posted 9/5/2011 9:23 PM (GMT 0)
Just a new update for those that are following - and this is a POSITIVE one...

Even though my scope showed the lower inflammation, my symptoms have improved significantly since I finished the antibiotic combo. ALL of my BMs are full formed and NORMAL. I have not seen this since I was on 60mg of pred.

I tapered 5mg to 20mg on Friday without so much as a blip. I will continue to taper at 5mg a week. I am cautiously optimistic.

Frequency is coming down too. Down to about 6-8 a day, but again all completely formed.

I noticed these changes just before I started the Biaxan, so I believe it is due to the combo therapy. So far, the Biaxan has not had any negative effects either.

Keep trying with the enemas - twice a day over the weekend, but I cannot keep them in! Most I can keep is about 1/3 of the 100ml. I will continue though. I am very motivated to get that bottom part healed completely, especially since the symptoms are so greatly improved.

Still seeing the surgeon tomorrow, as it is good to have a back up plan.

I hope this continues. Fingers crossed. Positive vibes appreciated.
Posted 9/5/2011 11:44 PM (GMT 0)
M2P,

Glad to hear! I hope things continue to improve.

It just seems so bizarre to be taking biaxin. I hope the doc knows what s/he is doing.
Posted 9/9/2011 5:28 PM (GMT 0)
I am nw in my 3rd month of the como antibiotic therapy and still free from UC symptoms
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