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Starting Antibiotic Therapy - NEW POSITIVE UPDATE

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Posted 8/10/2011 6:05 PM (GMT 0)
So, it is official that Remicade doesn't work for me. :( I had my 6th dose (3rd double dose) 3 weeks ago, and tried to taper off the pred. Symptoms increased and continued to worsen once I tapered from 25mg - 15 mg. I am now back up to 25mg for now. There are no more medical options for me.

I have an appt with the surgeon for a consultation the first week of September.

In the meantime, I am going to try the antibiotic therapy. My GI is also considering the LDN, but want to do a bit more research on it first.

I will pick up my scripts for the antibiotics later today, and start tonight.

Wish me luck! I will keep you posted.
Posted 8/10/2011 6:56 PM (GMT 0)
Sounds like your doc and you are consulting and trying on all the possible avenues before surgery...which is a testement to your determination and tenacity.

I hope you do finally get a break.


q
Posted 8/10/2011 8:27 PM (GMT 0)
Hi mom2panda....Ask your doctor about this new Fecal transplant therapy,,,seems to work for a lot of people.
Just type Fecal bacteriotherapy in your search bar,,and you will get a whole lot of info about it. Sounds promising.
I only hope that doctors shy away from it because it will mean less money for all the drugs they push on us.
Anyway,,,good luck.
Posted 8/10/2011 8:30 PM (GMT 0)
it states in her siggie that she already tried it
Posted 8/10/2011 9:13 PM (GMT 0)
Best of luck with the antibiotics. It's done wonders for me after going a year with nothing else helping long term, except steroids which of course can't be taken indefinitely.

Keep us posted. THere is a "combo antibiotics" thread where people who are trying it are posting updates.

Do you have a plan as to what kind of probiotics you are going to take while on the antibiotics? I found raw sauerkraut to be the best. Cheap and natural and low on carbs, unlike yogurt... a little hard to find though unless you live in a big city with lot of health food stores.
Posted 8/10/2011 9:33 PM (GMT 0)
CGK - thanks, I have been following the thread, which is actually what lead me to try it! I am so pleased that you and a few others have had such good results. Shout-out to Diaperman for starting the thread, but sorry that it didn't work for him.

I am going to take my usual probiotic - Renew Life Ultralflora Critical Care (50 Billion) but take it twice a day instead of once a day.

It's a challenge to fit all my meds in with the antibiotics and the probiotics! My eating/meds/supps schedule is going to have to be very rigid for the 2 weeks! :) Totally worth it if it works!

CGK - what was your schedule for the antibiotics - Tetracycline 500 3x/d, Amoxcillan 500 3x/d, and Flagyl 250 3x/day?
Posted 8/10/2011 11:24 PM (GMT 0)

mom2panda said...

CGK - what was your schedule for the antibiotics - Tetracycline 500 3x/d, Amoxcillan 500 3x/d, and Flagyl 250 3x/day?

Yep, for two weeks. I took the tetracycline an hour before meals and the other two with food.

They caused some stomach upset and diarrhea which lasted until a few days after I had finished all the pills, but it was manageable. Well worth it considering the drastic improvement I've had.

I was happy to read that the use of tetracycline is associated with a very low risk of developing c-diff, something my doctor was worried about.

Don't be shocked if you feel worse at first. Whenever you kill off most of the flora in your intestines, you gotta expect that to have a pretty big impact on you. When those little critters kick the bucket, especially the harmful ones, I'm sure they blow up and release all kinds of nasty stuff which takes a while to clear out.
Posted 8/10/2011 11:59 PM (GMT 0)
Well, I am already having lots of mixed stool including diarrhea 15-20x per day, so I can't imagine it will be much worse than that! :) (At least I hope not!) I just stepped my prednisone back up again too, so hopefully that will ease some of the UC symptoms while I am doing the therapy.

I am not sure when to step down again on the pred. Maybe after the 2 weeks is up? Or taper 5mg next week, and continue from there until I am off....Have to see how it goes, I guess.
Posted 8/13/2011 9:43 AM (GMT 0)
I am starting Day 3 of the antibiotics, keeping in mind that I also upped my pred from 15mg to 25mg on my starting day.

Yesterday was a good day in terms of frequency. I went from 20x per day down to 9x. Unfortunately, there was a lot more blood than is usual for me, but i was happy to be going much less.

The other GREAT thing was that I slept through the night the last two nights! Even when I was on 25mg of pred a few weeks ago, I wasn't able to get through the night without having to go. And, most recently before the antibiotics and upped pred, I was getting up 3-8x per night.

It is just amazing how much a decent sleep can make me feel better.
Posted 8/13/2011 7:25 PM (GMT 0)
I started my steroid taper, now doing a steroid enema every second night (instead of every night) and will do this for a few weeks, then go to every third night, then fourth, and so on. I am not taking any oral steroids (and have not for a long time, > 6 months), only doing the enema.

I was a little worried that I started the taper too soon, because I was still improving almost every day and was thinking I should have waited until I hit a plateau. So far so good however. On the days I am skipping the steroid enema, my symptoms only uptick slightly (a little bit of mucous, once with a slight reddish tinge to it). Otherwise not much different.

My joints are really achy and I feel a bit irritable. I guess that is to be expected when you get real low on the steroids after taking them for a long time. Doing a steroid enema every 2nd night is probably the equivalent to taking about 3 mgs of oral pred, which is really nothing.
Posted 8/20/2011 2:43 PM (GMT 0)
UPDATE:

I have been on the antibiotics since Aug. 10. On the same day, I increased my pred back up to 25 from 15mg.

My BMs have decreased by about 1/2 from 20x down to 10x a day. Initially, there was a lot of D, but more recently, I am having more formation in the stool. Mostly it is formed on some level. Not totally solid, but much better. Urgency is hit and miss and still intense sometimes. Tenesmus is greatly improved, and is now fairly rare.

The blood and pus are gone entirely.

I'll note that even though I increased my Pred, when I was on 25mg about a month ago, I was still going 15-20x per day with blood, pus and urgency.

So, is it working? Maybe. I have 5 more days left, and once I have completed the therapy I will taper the pred and see what happens.
Posted 8/20/2011 3:04 PM (GMT 0)
mom2panda,

Sounds like you are on the right track.

I hope at the end of another 5 days, you'll be able to report back that you're doing awesome!

Good luck.

Posted 8/20/2011 3:15 PM (GMT 0)
I hope you're able to taper off pred quickily with the heal of the antibiotic treatment panda. I am looking forward to hearing more updates.
Posted 8/21/2011 12:25 AM (GMT 0)
mom2panda,
Keep us posted, I hope it works for you
I asked my Dr about putting me on the combo therapy but she rather me try the LDN instead

Fingers crossed for you!
Posted 8/21/2011 12:53 AM (GMT 0)
Mom2Panda,

Glad to hear you are seeing some positive signs!

Were you having any bad smell when you went to the bathroom? That's one thing I noticed right away was that disgusting rotten egg smell disappeared within a few days. It was so bad, it would almost cause me to gag.

I'm still doing great. It's dinner time, and I've only been to the boys room once so far today, just when I got up.

After about a week, I did start to feel the effects of cutting my steroids in half. Still doing a steroid enema every second night, and things seem to have stabilized after a few days of feeling a little rough. Gassy, some mucous here and there, achy joints, headache, tired, etc., but all is good again. Will wait another week or so then go to every third night.

Keep us posted!
Posted 8/23/2011 12:00 AM (GMT 0)
Hope this works good for you guys. Gives others another option.
Posted 8/23/2011 12:09 AM (GMT 0)
CKG - I have tried steroid enemas in the past but I they have not helped, and I have a hard time keeping them in - even small amounts. Was thinking about trying again seeing as I am not bleeding and frequency is down. Maybe they will stay in. I really hate them and have had no success, so I am not motivated to keep trying. Better than surgery...

I have to admit though, my frequency is up the last two days. My diet was not great over the weekend, so I am hoping things will settle over the next day or two.

The bad smell was really bad the first few days, yes!! Since then, it has not been too bad. Some here and there, but overall okay.

Thanks to all the well wishers - I hope it works too.

Either way, I will still go for my consultation with the surgeon. I imagine the wait time for surgery here will be 6-12 weeks, so I will have time to truly see how this works.
Posted 8/23/2011 5:26 AM (GMT 0)
Mom2Panda,

I felt lousy until I was almost done with the antibiotics. Things really started to turn a few days after finishing them and I continued to improve gradually for weeks after that.

How many more days of antibiotics do you have left?
Posted 8/23/2011 5:48 AM (GMT 0)
I have done a complete 180 since beginning antidepressants, pristiq to be exact. I would give it a try if you're not opposed to taking these types of medications. See how you do after the anitbiotics but I think this may be what is helping me. I have seen studies showing people with IBD responding to wellbutrin. I imagine I may have responded to that as well. I asked for wellbutrin but I was only able to get pristiq and I felt better about 2 weeks after starting it. If you're down, stressed, a worrier or depressed, please give it a try. It may help you.
Posted 8/23/2011 11:45 AM (GMT 0)
notsosicklygirl,

So glad the pristiq is helping you and you're seeing a major difference.

Posted 8/23/2011 7:33 PM (GMT 0)
notsosickly - I did recently start Ciprolex (Lexapro in US) in the beginning of July. I don't have any more room in my sig to add it! I have found it has helped tremendously with the stress, and also anxiety. It makes me feel as though I can see things more objectively too - good thing when considering surgery. In terms of symptoms, I don't think it has had an impact.

Today's update - still up on the frequency 15x yesterday, 12x so far today. Blood showed up this morning for a few BMs and then disappeared again. Waking again during the night 2-3x. Sigh. PMS has started too, so maybe that is making things worse. So hard to say. I don't have an obvious pattern.

2 more days until I am done the therapy. We'll see.
Posted 8/24/2011 9:56 PM (GMT 0)
Took my last antibiotics today.

Today has been challenging. Energy low, and BM's up to 17 by 4:30 this afternoon. Up 5x last night too. Urgency is very intense again :(((, and the tenesmus is returning. Took the day off and just slept and read.

On the upside, there has really been little if any blood, and the BM's are softly formed or loose. Not much in the way of full fledged D.

Hoping things start level out as they did for CGK. Maintain my pred at 25mg for at least the next 5 days. Then I'll see how I am doing, and if I am confident enough to taper.
Posted 8/25/2011 1:11 AM (GMT 0)
From what I've read it sounds like everyone else felt the same way until they were finally off the antibiotics. The good news is the blood is gone! That is always a good indication that the inflammation is healing. Keep us updated! I'm eager to hear how you are doing.

My holistic doctor wants to research the combo some before prescribing it for me. I was really hoping she would just call it in for me so I could start it today. Bummer! My GI prescribed the cipro/flagyl, but I'm scared to take it. I guess I am leaning more towards the 3 you are doing because so many are seeing good results. My LDN will be here tomorrow so I might go ahead and start that!

Good luck!
Posted 8/25/2011 1:17 AM (GMT 0)
Good luck to you.

I noticed you tried fecal transplant in the past. Perhaps now would be

a good time to try it again. The antibiotics have wiped out most of the flora in your colon. One way or another, new flora will get in there. Why leave it to chance. If you have a good donor available...

Posted 8/25/2011 1:22 AM (GMT 0)
mom2girls,

Let me know when you start the LDN.

Hope you feel better.

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