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Combo Antibiotic treatment - PART I

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Ulcerative Colitis
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Posted 8/3/2011 5:08 PM (GMT 0)
I had slight uptick in symptoms during my first day after finishing the antibiotics. Just a few extra BMs (6 in total) and some blood passed just before bedtime.

Today is the second day of no antibiotics. Had a nice BM this morning, nice and free flowing (usually a sign for me that inflammation in the rectum is at a minimum), although it was a little soft.

Obviously my body is still adjusting. Not much else to report except that I am still way better than I was before I started, just not sure which way things will go from here. I'm trying to not hyper-analyze every little symptom or change in symptoms as that can mess with your head.
Posted 8/4/2011 3:54 PM (GMT 0)
How are you feeling today C_G_K? And how about you Thoreau? Hoping you're well guys.
Posted 8/4/2011 4:13 PM (GMT 0)
Had a great day yesterday! Comfortably slept through the night , and then had 5 trips to the boys room in total, with 2 of those just before bed. Less gas finally. I have been plagued with excessive gas for a very long time now. No urgency. Pain with BM greatly diminished. Nausea gone too. Must have been the antibiotics.

Was able to work outside the house all day with no problems. Finally got out to see some clients that were patiently waiting and I didn't have to ask them to use their bathrooms for a change.

One kind of weird thing. For some reason, I am either dreaming a lot more or perhaps just remembering my dreams more when I wake up. Maybe just one of those odd coincidences.

If I can hang on to the gains I have made, this will have been completely worth doing! Two weeks and about $30 worth of pills is all it takes
Posted 8/4/2011 4:39 PM (GMT 0)

gavin92 said...
How are you feeling today C_G_K? And how about you Thoreau? Hoping you're well guys.

Today is the 6th day of antibiotics for me. As usual, my symptoms are unpredictable.

BM's per day: 4, 3, 7, 7, 7
Blood: All days, some days much less than others. Only within/on the stool.
Stool Consistency: Formed, medium formed, and formed clumps. No diarrhea or mush.
Urgency: Bothersome in morning and late afternoon/evening. Not bad during work hours.

I'm usually going 2-5 times in the morning, go all workday without going, then come home and go 1-3 more times.

I have felt occasionally as if I were doing better, but lately I would say that I am in fact not any better than when I started. However, I have eaten more food that I had previously been avoiding, including a milk shake on the night I began this, some breads, and pasta a couple days ago. No alcohol. No candy or pop.

I am still hopeful :-)
Posted 8/4/2011 4:48 PM (GMT 0)
Thoreau, I hope you see more improvement soon. I remember people were saying that some of the results from this treatment can be seen much later, weeks after completing the antibiotics. Try to keep thinking positive.
Posted 8/4/2011 6:27 PM (GMT 0)
Thoreau,

Mudua and I felt worse before we felt better, so it is not unexpected.

Are you taking any probiotics?
Posted 8/4/2011 6:37 PM (GMT 0)
I'm taking saccharomyces boulardii and VSL3-DS daily. Also selenium, vitamin E, CoQ10, turmeric root, aloe vera juice, L-glutamine, psyllium husks, NAG and a multivitamin. lol.
Posted 8/4/2011 8:46 PM (GMT 0)
Thoreau, keep your head up. As notsosicklygirl says it can take a few weeks for the symptoms to improve. I'm sure they will for you :).

C_G_K have you considered doing one more round of this antibiotic combo therapy to get rid of any lingering bacteria/parasites? I remember reading somewhere on this forum of someone not quite getting into remission the first time but getting into remission after re-attempting the therapy. Might be worth a try!
Posted 8/4/2011 8:55 PM (GMT 0)
gavin,

I might consider a second round if the improvement stalls out over then next few months, but I would only want to do it under the care of somebody with experience treating U.C. with antibiotics. Someone like Dr. Barody would be ideal, if such a physician exists here in the U.S.
Posted 8/5/2011 1:24 AM (GMT 0)

Thoreau said...
I'm taking saccharomyces boulardii and VSL3-DS daily. Also selenium, vitamin E, CoQ10, turmeric root, aloe vera juice, L-glutamine, psyllium husks, NAG and a multivitamin. lol.

Hey thats a pretty substantial effort underway you got there.

If I were in your shoes I would or have previously pulled the aloe vera juice out, l-glutamine high and 3 times daily, I get off saccharomyces boulardii after a few weeks but would be applying cold water salmon, psyllium seed powder and canned spinach. I would nearly stop eating everything else and see if it stabilized.
Posted 8/5/2011 3:34 AM (GMT 0)
Hey CK and everybody, well some interesting things have happened. The results from my last colonoscopy a couple of weeks ago revealed low grade dysplasia, so I will be have my colon removed soon. I am sort of relieved in that I do not have to make a choice. Perhaps this is why the combo treatment did not hold up for me. I emailed this thread to my doctor who got a kick out it actually my handle, diaper man. I am not sure why other GI do not know about it. If I did not have the dysplasia I probably would have tried the FT as i think it has something to do with bacteria. Anyway I am keeping track of what’s going on with this. Good luck to all.  
Posted 8/5/2011 2:01 PM (GMT 0)
Best day so far yesterday. 4 BMs, roughly 7:30 am, 10:30 am, 11 a.m., then not again until 11 p.m. Virtually everything was improved: no blood, mucous almost completely dried up, no ugly U.C. type gas, in fact very little gas at all, no urgency.

I was able to work, and then after work, stay busy with chores, errands, spending time with my kids etc., without even thinking about the bathroom. Awesome!!

Trying to not let my emotions get too high, as I have been disappointed before when something seems to work but then symptoms return. Taking it day by day.


D-man,

Sorry to hear about your dysplasia. Do you still have the option of doing a pouch? Who is going to do the surgery for you?
Posted 8/5/2011 2:53 PM (GMT 0)
I believe I still have the option for jpouch, even though the dysplasia is in the rectum area.  I have seen one surgeon who has done the most jpouches in Houston, but he does it open.  I will be seeing another on Monday who does it laposcopic.  So I have not chosen a surgeon yet.  Does anybody have any recommendations for a surgeon in Houston.
Posted 8/5/2011 3:09 PM (GMT 0)
I wanted to add to this thread. I tried this combo about a year ago and didnt have any significant changes. I then read a study about MAP and tried Clarithromycin and Rifimapin for the last 6 months. It seemed to help slightly but overall it hasnt been the therapy I was hoping. After seeing this thread I decided to give the combo one more try. Hopefully it will work the second time around! I have added transdermal LDN about 6 weeks ago and that does seem to be helping. I am hoping that this combo together will work. As far as supplements go I am doing Curamed, R-ALA, saccharomyces boulardii, and psyllium seed/husk plus L-glutamine. Started combo AB last night will update already see a difference in urgency although I have lost some form to my bm's.
Posted 8/5/2011 5:30 PM (GMT 0)
I am on the 7th day of this therapy, but only have 6 days of doses done due to starting late the first day and missing one dose. I would say that in general the only effect I have had due to the antibiotics thus far is that I am slowly losing control of my colon. Urgency is definitely on the rise. :-/

Still holding hope though!
Posted 8/5/2011 6:19 PM (GMT 0)
Thoreau,

The antibiotics are hard on the digestive system for sure. I thought for sure I had made things worse at first, but from days 8 thru 14, I went from 15, to 9,8,6,6,5,4 BMs a day. It turned pretty fast. No guarantees of course, but just relating my experience so you have something to compare to.

I'm keeping my fingers crossed for ya!
Posted 8/6/2011 1:12 AM (GMT 0)
Hi All-
I'm closely viewing this thread and I'm so uplifted on the progress that each one of you are having. 
diaperman-
Sorry to read about your dysplsia results- I know you will get through this.
I'm doing the LDN protocol and see what happens.  about three weeks into it and some improvement, however it makes a difference with diet for me and I need to increase my vitamins, healing colon herbs. 
This is such a frustrating disease, but I've been pretty greatful to have great family, great boss and co-workers that give me support.
Keep the posts coming!
Posted 8/6/2011 11:33 PM (GMT 0)
Halfway through the doses today.

Urgency and pain have increased, as well as number of bowel movements per day. All stools are formed or medium (soft) formed. Blood increases and decreases from stool to stool, but I would say it has decreased overall in the last 48 hours.

Having roughly 7 BM's per day for the last 3-4 days. Most stools are in morning within a 2 hour period, and then a couple more late afternoon and evening.

Have often felt sick while on the antibiotics. Tonight I'm supposed to be at a friend's wedding reception but it kind of feels like poison is slightly boiling in my stomach/gut area, so it feels better to be hiding out in my house. I'm not much into big social situations when I feel terrible and have to poop a lot!

I'm definitely not complaining though, just wanting to share my experience thus far. I have a feeling that once I'm done with this therapy that things will improve... by maybe a lot. No matter what I've either ruled out something that doesn't help, or it will help. So... it's good either way :-)

Good luck everyone!

***EDIT 2 am following morning. I waited around for a while at home, ate a bit of food and let my stomach feelings settle a bit. I took 2 lomotil and made sure I was feeling okay. I made it out to the wedding reception in time to catch up with friends, dance and be a DD to a couple people. The weather was incredible tonight and I'm really glad I made it out for a while. It seems like every time I make the effort to get out, even if it takes me a while, pays off. It's a good distraction for my health problem. AND... I didn't have any BM's the rest of the evening.
Posted 8/7/2011 12:11 AM (GMT 0)
Had another excellent day yesterday. 4 BMs, three in the morning, then 1 at bedtime. Had a long 12 hour stretch during the day and evening with no BMs.

Today a bit odd so far, 4 BMs in the morning, all legitimate (not just gas or mucous), 3 big ones and 1 avg size one. I swear I don't know where all this poop comes from. It was very well formed though, pretty well like normal healthy poop, and no blood, mucous, urgency or bad smell. In fact I woke up at 5:30 AM with lots of gas and had the first huge BM then. Today is my 5th day of no antibiotics.

So close to full remission... just need to eliminate a morning BM or two, otherwise all is good.

Thoreau,

What you are going through sounds pretty familiar. It does feel like it is turning your guts into a witches cauldron. For me it took even a few days after finishing the antibiotics for the stool to firm up and the nausea to totally clear up.
Posted 8/7/2011 9:07 PM (GMT 0)
How are you guys doing now? Getting ever better I hope :)
Posted 8/8/2011 5:06 AM (GMT 0)
Still doing great. Averaging 4 to 5 BMs a day (fully formed), other than that, pretty well perfect! It's nice to leave the house without fear after an ugly year long flare.
Posted 8/8/2011 8:08 PM (GMT 0)
That's great news! Glad that you're doing well. Fingers crossed you can cut out one or two BMs a day!
Posted 8/8/2011 8:19 PM (GMT 0)
Hi it's about two months since I did the combo treatment, I much better I think. I take VSL#3 at night and I get wicked gas in the night and the morning, but ususally I poop a few times and I'm done, not like before where I would go for hours and barely make it on a 15 mins drive. Would I do it again, yes. It has helped but there are no formed stools and the blood hasn't stopped, but things are much more calmer all the way around. I wish I had such luck with just being in remission for it, but I haven't. I would definetly tell others to try. I may try again one day if my doc is up for it.

I had wicked diarreah for weeks after and still sometimes now. It's not C Diff they tested me. It comes and goes.

Posted 8/8/2011 9:04 PM (GMT 0)
It's now seven weeks after I completed the antibiotic therapy and I am convinced that I am cured, normal stools once a day with no urgency. I can eat anything.

4 months ago , my doctor told me that nothing would help me any longer and I needed surgery.

I am currently taking no medications. I would realy like to thank Diaper Man for starting this thread and I hope others will try it as well.
Posted 8/8/2011 10:24 PM (GMT 0)
Mudua,

Glad to hear you are still doing great. I don't feel completely cured, but dramatically better.

You must be thrilled! I'm sure you are living life to the fullest and not taking anything for granted.
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