I had a follow up appointment with my GI. He was very up front in saying "our backs are up against a wall" since I have not responded to anything we've tried. So now on to vibersi. He said he rarely uses it for patients due to its cost and many insurance plans don't cover it. He also said it isn't something he'd use for MC, which was still active from my last colonoscopy in October. He said the next med would be another form of cholestyramine (forgot the name) that some patients have responded to, although, I haven't responded to, or tolerated the generic, questran, or colestipol. He isn't very optimistic about either but said we can at least check it off the list. The bilemacid bimders areba challenge since I take my thyroid meds at 7 am and 1 pm. He also brought up prednisone. I won't go that route again and the second time I was on it, it didn't help.
I have free samples of the vibersi and have taken three pills so far. Not sure if I like how I feel but I don't necessarily know if how I feel is related. I don't like that it is a new drug. The warnings on it are quite alarming. It can cause death in those without a gall bladder. I personally don't have gall bladder issues that I know of but several members of my family do. It talks about billary issues.... Which brings my son to mind. Not that any of it is related to me but I would rather not tempt fate. I am curious though, i've only used the bathroom twice today which is unusal. My GI said we aren't looking for normal but just a reduction- maybe instead of 8, it'd go down to four trips a day. Not very encouraging.
Viberzi
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Viberzi
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
More than likely the deadly side effects won't effect me but it does make me a bit less enthusiastic to try it. I don't drink either so that helps. I don't care for the fact that this is a relatively new drug so the long term side effects are still in the guinea pig stage.
I stopped taking viberzi after four pills. It did seem to immediately slow my guts down but along with that came a stomach ache and a feeling of fullness which was very uncomfortable. My muscles ached more than normal and I had a headache but it's hard to tell if that is related. I had no trips to the bathroom during the day but I was up at 1:30AM for about an hour and a half.... five trips to the bathroom that were very uncomfortable and slow. I still had WD so it was a very unusual feeling to be sitting for 5-10 minutes trying to let things out. It felt as if my intestines were dead and the WD was just slowly making it's way down. Not sure if that's possible but that would make sense to the bloated/fullness feeling. My guess is the D just sat there instead of running through me like normal. I was much more crampy and had abdominal pains when I would go back to bed only to get up again to use the bathroom. I generally don't have pain or discomfort. When I have D, it is urgent and the trip to the toilet is complete within seconds. I go and I'm done- about eight times a day. This seems to draw it out. More than likely, it would decrease the number of trips per day but it doesn't seem like a good idea have it trapped in my body to just sit and ferment a bit longer.
My GI also gave me samples for the 75 mg pill (in case the 100 mg were too much) and I thought about giving it a try but couldn't bring myself to take it. Apparently, with viberzi you start with the higher dose and if you don't tolerate it then you drop to the lower dose. Even if it did work in reducing the number of trips to the bathroom, it does nothing for my D so to use this as a long-term solution doesn't make sense. I think I am done with the drugs...... this was #11. Recovery takes quite a while and it seems odd to wish for my old problems back.
Now the only options left are the bile acid binders (which haven't worked the last 4-5 time I've tried them), other antibiotics (none have helped so far, aren't a long term solution, and not a good choice for someone who already has limited good gut flora), and prednisone (nope, nope, nope).
I don't think this is an option for MCers...... could it help? I don't know. It is used for those with and IBS-D dx. Most likely, my reaction is not the norm so I wouldn't base any decisions about the drug on my experience. My GI tried it simply because we've ran through the protocol for MC drugs. I have not responded to any and the side effects of most were worse than just putting up with the WD. I am pretty much tied to my house and work right now and dead tired. Broken sleep is a contributing factor with the fatigue.
I was hoping not to have to go with the at-home FMT route but it appears that is my last resort. All of the worries I have about it are set aside now. I have the supplies on order and am just waiting for results from my husbands stool tests to be processed. They were received about two weeks ago so I am impatiently waiting. If I was willing to try a new drug that has numerous health warnings, I might as well accept the risks involved with my husband's DNA. Things can get worse- for sure but what if things can get better? I would love to get my life back. My husband has always been at my side for all my ups and downs. More downs in the past ten years and he is the first to say "let's give it a try!"
We've been to alternative medicine practitioners, witch doctors (his words, but pretty accurate), functional medicine doctors, GIs, more supplements than you can shake a stick at, accupuncture, anything and everything. It would be a dream if my healing came directly from him. Read the stories of some of the UC patients who have cured themselves...... it is inspiring. They are clear it is not an easy road but one that is worth trying. The ick factor doesn't bother me at all. I'm so used to dealing with poop coming out all day/night long that poop going in can't be much worse. haha.
I would have never guessed in a million years I would be venturing down this road but I can't wait for the medical community to catch up..... they are now first agreeing that food MAY play a part in MC. That took almost ten years..... I have no time to wait.
I stopped taking viberzi after four pills. It did seem to immediately slow my guts down but along with that came a stomach ache and a feeling of fullness which was very uncomfortable. My muscles ached more than normal and I had a headache but it's hard to tell if that is related. I had no trips to the bathroom during the day but I was up at 1:30AM for about an hour and a half.... five trips to the bathroom that were very uncomfortable and slow. I still had WD so it was a very unusual feeling to be sitting for 5-10 minutes trying to let things out. It felt as if my intestines were dead and the WD was just slowly making it's way down. Not sure if that's possible but that would make sense to the bloated/fullness feeling. My guess is the D just sat there instead of running through me like normal. I was much more crampy and had abdominal pains when I would go back to bed only to get up again to use the bathroom. I generally don't have pain or discomfort. When I have D, it is urgent and the trip to the toilet is complete within seconds. I go and I'm done- about eight times a day. This seems to draw it out. More than likely, it would decrease the number of trips per day but it doesn't seem like a good idea have it trapped in my body to just sit and ferment a bit longer.
My GI also gave me samples for the 75 mg pill (in case the 100 mg were too much) and I thought about giving it a try but couldn't bring myself to take it. Apparently, with viberzi you start with the higher dose and if you don't tolerate it then you drop to the lower dose. Even if it did work in reducing the number of trips to the bathroom, it does nothing for my D so to use this as a long-term solution doesn't make sense. I think I am done with the drugs...... this was #11. Recovery takes quite a while and it seems odd to wish for my old problems back.
Now the only options left are the bile acid binders (which haven't worked the last 4-5 time I've tried them), other antibiotics (none have helped so far, aren't a long term solution, and not a good choice for someone who already has limited good gut flora), and prednisone (nope, nope, nope).
I don't think this is an option for MCers...... could it help? I don't know. It is used for those with and IBS-D dx. Most likely, my reaction is not the norm so I wouldn't base any decisions about the drug on my experience. My GI tried it simply because we've ran through the protocol for MC drugs. I have not responded to any and the side effects of most were worse than just putting up with the WD. I am pretty much tied to my house and work right now and dead tired. Broken sleep is a contributing factor with the fatigue.
I was hoping not to have to go with the at-home FMT route but it appears that is my last resort. All of the worries I have about it are set aside now. I have the supplies on order and am just waiting for results from my husbands stool tests to be processed. They were received about two weeks ago so I am impatiently waiting. If I was willing to try a new drug that has numerous health warnings, I might as well accept the risks involved with my husband's DNA. Things can get worse- for sure but what if things can get better? I would love to get my life back. My husband has always been at my side for all my ups and downs. More downs in the past ten years and he is the first to say "let's give it a try!"
We've been to alternative medicine practitioners, witch doctors (his words, but pretty accurate), functional medicine doctors, GIs, more supplements than you can shake a stick at, accupuncture, anything and everything. It would be a dream if my healing came directly from him. Read the stories of some of the UC patients who have cured themselves...... it is inspiring. They are clear it is not an easy road but one that is worth trying. The ick factor doesn't bother me at all. I'm so used to dealing with poop coming out all day/night long that poop going in can't be much worse. haha.
I would have never guessed in a million years I would be venturing down this road but I can't wait for the medical community to catch up..... they are now first agreeing that food MAY play a part in MC. That took almost ten years..... I have no time to wait.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb,
Have you seen this meta analysis? They found that FMT was effective for 22 % of UC patients and 60.5 % of Crohn's patients, for an overall average of 45 %. This was based on 79 UC patients and 39 Crohn's patients in 18 previous studies. No statement on how many attempts were made, and there were no extended followups , so it's not known how long the remissions lasted.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4296742/
Tex
Have you seen this meta analysis? They found that FMT was effective for 22 % of UC patients and 60.5 % of Crohn's patients, for an overall average of 45 %. This was based on 79 UC patients and 39 Crohn's patients in 18 previous studies. No statement on how many attempts were made, and there were no extended followups , so it's not known how long the remissions lasted.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4296742/
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I hadn't found that one.... Thanks for sharing.
Encouraging but sucess rates a liitle lower than what I had thought. Still worth a try without many options left.
Encouraging but sucess rates a liitle lower than what I had thought. Still worth a try without many options left.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease