Hello. Apologies this is rambling.
I was first diagnosed with CC 9 years ago. It was pretty serve and boy was I sick. Budesinide pills set me right. I relapsed and slow-tapered a couple of times.
Two of years ago I started having wd again. Loud bowels sounds. My GI took blood levels and said since my sed rate was normal it was IBS not MC and just to take Imodium. I did. I managed. By this time I was also having worsening reflux and feeling nauseous a lot. I managed this with pepcid albeit it poorly. After a couple years of managing these things at a tolerable level by reflux got so bad I was constantly regurgitating in mouth. Not constant but frequently through out the day while upright and was hoarse. I tried taking nexsum but got sever diarrhea immediately so went back to pepcid. I had to change GI clinics because I realized it was awful. It's a long story.
I finally got a scope and was diagnosed with severe erosive espoghitis. There were erosions all over. I was put on prilosec 40mg 2x a day so my esophagus could heal. It worked. I was also on a completely restricted diet because my stomach was so upset at this point I could barely eat and food stuck in my throat. But after 3 months I felt much better. Yay, medicine worked. I still stayed off, coffee, any acidic food. no tomatoes, low oil, no spices. I was about to drop to 40mg proilosic just once.
Then 3 week ago...wd returned. 5-6 bm a day. Amazing watery volume. My new gi doctor did the fecal calprotein to look at inflammation which was high but not crazy high. He told me PPI's were know triggers for MC and the levels of my labs with consistent with past history for CC. Because my reflux was so severe he said I have to stay on the PPI. We switched to a new one but it's still WD city. No improvement. I started buesinde pills again.
I am not tolerating them as well this time. Lots of gut pain, gas, stomach ache and vertigo. I was diagnosed with meniere's disease this summer too.
Has anyone else been in this situation? I don't see the point of doing budesinide while taking a drug that is a known trigger. Is it possible doing the diet changes to heal my gut could also help my esophagtis? I saw the pictures it was really bad and I lost 18# and I'm 5'6' and was 125. So it a severe case of reflux. However, when I had the severe case of CC in 2013 I lost 20#s and couldn't leave the house. I had bloody diarrhea at that point. The GI said, my intestines where just a mess it looked like UC but the labs were CC.
I feel like I'm really caught between a rock and, well, a rock at this point.
Any advice appreciated.
servere reflux & CC
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Re: servere reflux & CC
Hi, and welcome to the group. Sorry for the late response, but there have been a lot of demands on my time, lately. I started to write a long-winded post to try to help you get started on this journey, but then it dawned on me that there is a download on the Microscopic Colitis Foundation website that outlines in detail, how to go about winning off PPIs. For your convenience, here's a direct link that you can click to get the download:
https://www.microscopiccolitisfoundatio ... 112716.pdf
To answer your specific questions, this response will still be long-winded, but yes, MC is associated with reflux problems and Gerd, so the diet that we use to attain remission, and the use of the supplements that we recommend, namely vitamin D and magnesium, should help to get rid of a PPI dependence. But of course you will need to follow the recommendations in the download listed above, also.
I truly understand how tough your position is, because I have personal experience with PPIs, and it was trivial, compared with your involvement. Back in 2010, as I was recovering from major abdominal surgery, as is typical, the surgery stopped my digestive system from functioning. I had a tube inserted through a nostril into my stomach, to drain the gastric acid, and I had a respirator tube that went through my nostrils into my lungs. After about 3 days, they decided to feed me, to see if my digestive system would restart. To say that I was hungry, would be a serious understatement. So naturally, I ate too fast, and the tube going down my throat didn't help the situation, so I choked, and in the process, I blew both tubes back out of my nose. I wasn't very fond of them anyway, because the nurse who inserted the respirator tube was apparently inexperienced, or in a hurry, and she irritated my trachea in the process, and it was still painful. I thought I had it made, but then the doctor came by, noticede the tubes were out, and asked what had happened to them. Naturally, he insisted that they would have to be replaced, and when I argued, he said in that case, I would have to take a PPI each day. I thought the PPI was the lesser of 2 evils, so I chose to do that. I only took them for 3 days, one each day, and didn't have any problems while I remained in the hospital.
After I got home, though, I'm not sure whether this happened after the first night, or the 2nd, but I woke up during the wee hours of the morning with a mouth full of stomach acid. I stumbled to the bathroom, spit it out, and tried to rinse out my mouth, but that burned my mouth and throat for hours. After that, I even had random acid reflux during the day, when I was standing upright. So it only took 3 days for PPIs to prove to me how iatrogenic they actually were. I followed the guidelines that I asked you to download (back before I ever even wrote that article), and by being careful, after about 6 weeks, I no longer had acid reflux at random times during the day. But it took over 6 months for my lower esophageal sphincter to heal sufficiently so that I could lie on my right side, without worrying about reflux. In my personal opinion,PPIs are some of the most iatrogenic drugs available. If you read the label, it says do not use for more than 2 weeks (or something to that effect), unless following a doctor's orders. And of course, the problem is, doctors have absolutely no qualms about prescribing these drugs for an unlimited amount of time. But after 2 weeks, I doubt that there are any users who are addicted by then, anyway, so they never should be prescribed in the first place. H2 blockers could be used safely, in place of PPIs, to treat the issues for which PPIs are prescribed. The main difference is, they have to be used multiple times a day, rather than once. But that little inconvenience hardly justifies the use of PPIs, simply because they have to be used only once per day.
I note that vertigo is listed as a side effect for PPIs. But the main reason that I believe you should be carefully following the diet, is because budesonide only attempts to suppress the inflammation after it's initiated, and the inflammation is reinforced with every meal. The diet will eventually heal the digestive system and prevent that Inflammation from ever being generated in the first place. That said, I note that research shows that steroid injections help to suppress vertigo symptoms in 87% of Ménière's disease patients. But to be honest, I doubt that budesonide helps that issue, because very little of it acts systemically. The lion's share of it stays in the intestines. But even so, based on the research, it seems unlikely that budesonide would exacerbate vertigo symptoms.
I hope this helps. Again, welcome aboard, and please feel free to ask anything.
Tex
https://www.microscopiccolitisfoundatio ... 112716.pdf
To answer your specific questions, this response will still be long-winded, but yes, MC is associated with reflux problems and Gerd, so the diet that we use to attain remission, and the use of the supplements that we recommend, namely vitamin D and magnesium, should help to get rid of a PPI dependence. But of course you will need to follow the recommendations in the download listed above, also.
I truly understand how tough your position is, because I have personal experience with PPIs, and it was trivial, compared with your involvement. Back in 2010, as I was recovering from major abdominal surgery, as is typical, the surgery stopped my digestive system from functioning. I had a tube inserted through a nostril into my stomach, to drain the gastric acid, and I had a respirator tube that went through my nostrils into my lungs. After about 3 days, they decided to feed me, to see if my digestive system would restart. To say that I was hungry, would be a serious understatement. So naturally, I ate too fast, and the tube going down my throat didn't help the situation, so I choked, and in the process, I blew both tubes back out of my nose. I wasn't very fond of them anyway, because the nurse who inserted the respirator tube was apparently inexperienced, or in a hurry, and she irritated my trachea in the process, and it was still painful. I thought I had it made, but then the doctor came by, noticede the tubes were out, and asked what had happened to them. Naturally, he insisted that they would have to be replaced, and when I argued, he said in that case, I would have to take a PPI each day. I thought the PPI was the lesser of 2 evils, so I chose to do that. I only took them for 3 days, one each day, and didn't have any problems while I remained in the hospital.
After I got home, though, I'm not sure whether this happened after the first night, or the 2nd, but I woke up during the wee hours of the morning with a mouth full of stomach acid. I stumbled to the bathroom, spit it out, and tried to rinse out my mouth, but that burned my mouth and throat for hours. After that, I even had random acid reflux during the day, when I was standing upright. So it only took 3 days for PPIs to prove to me how iatrogenic they actually were. I followed the guidelines that I asked you to download (back before I ever even wrote that article), and by being careful, after about 6 weeks, I no longer had acid reflux at random times during the day. But it took over 6 months for my lower esophageal sphincter to heal sufficiently so that I could lie on my right side, without worrying about reflux. In my personal opinion,PPIs are some of the most iatrogenic drugs available. If you read the label, it says do not use for more than 2 weeks (or something to that effect), unless following a doctor's orders. And of course, the problem is, doctors have absolutely no qualms about prescribing these drugs for an unlimited amount of time. But after 2 weeks, I doubt that there are any users who are addicted by then, anyway, so they never should be prescribed in the first place. H2 blockers could be used safely, in place of PPIs, to treat the issues for which PPIs are prescribed. The main difference is, they have to be used multiple times a day, rather than once. But that little inconvenience hardly justifies the use of PPIs, simply because they have to be used only once per day.
I note that vertigo is listed as a side effect for PPIs. But the main reason that I believe you should be carefully following the diet, is because budesonide only attempts to suppress the inflammation after it's initiated, and the inflammation is reinforced with every meal. The diet will eventually heal the digestive system and prevent that Inflammation from ever being generated in the first place. That said, I note that research shows that steroid injections help to suppress vertigo symptoms in 87% of Ménière's disease patients. But to be honest, I doubt that budesonide helps that issue, because very little of it acts systemically. The lion's share of it stays in the intestines. But even so, based on the research, it seems unlikely that budesonide would exacerbate vertigo symptoms.
I hope this helps. Again, welcome aboard, and please feel free to ask anything.
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.
Re: servere reflux & CC
Thanks for the welcome and reply Tex. It doesn't sound like your problems were minor compared to me. That was a tough go!
I've really come to appreciate how Dr's respond by throwing medication at you but that in turn causes a new problem. I see that I need to try to fix the root of the problem as you say. My husband is willing to help me do an elimination diet too so that's great. I just worry that the PPI will keep triggering the colitis so even with diet changes. I don't think I'll be able to get off them soon. In fact I think I need to increase in the short term because the 40mg dose 1x day isn't enough and I feel it getting bad. Food is starting to stick in my throat again and I"m hoarse all the time.
I stopped the budesinde and the menieres symptoms improved but of course the WD is back. It may just be the colitis is triggering the menieres. Any stress can cause it. I just don't know. Maybe I should try high does of Imodium for now. I'm really afraid that the colitis will get really bad like when I first had it and was house bound. It feels like poking a bear with a stick staying on these PPIs.
I'm rambling again. Thanks for your kindness and patience. It is nice to have people who understand what you are going through to some degree.
I will read the links. I'm so ready to try something else because this isn't working.
I've really come to appreciate how Dr's respond by throwing medication at you but that in turn causes a new problem. I see that I need to try to fix the root of the problem as you say. My husband is willing to help me do an elimination diet too so that's great. I just worry that the PPI will keep triggering the colitis so even with diet changes. I don't think I'll be able to get off them soon. In fact I think I need to increase in the short term because the 40mg dose 1x day isn't enough and I feel it getting bad. Food is starting to stick in my throat again and I"m hoarse all the time.
I stopped the budesinde and the menieres symptoms improved but of course the WD is back. It may just be the colitis is triggering the menieres. Any stress can cause it. I just don't know. Maybe I should try high does of Imodium for now. I'm really afraid that the colitis will get really bad like when I first had it and was house bound. It feels like poking a bear with a stick staying on these PPIs.
I'm rambling again. Thanks for your kindness and patience. It is nice to have people who understand what you are going through to some degree.
I will read the links. I'm so ready to try something else because this isn't working.
Re: servere reflux & CC
I agree that if the WD returns when you stop the budesonide, and you're not sure that it's causing the Ménière's symptoms, anyway, it may be beneficial to go back on the budesonide. When CC is active, the symptoms can be so debilitating that they dominate the situation, making it very difficult to attempt to resolve other issues.
Tex
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.