Hello, all! I was diagnosed with collagenous colitis one month ago. Since that day, I have been doing as much research as I can, and I have found reading this forum particularly informative. I am very thankful to have found the wealth of knowledge you folks offer here!
I’m going to apologize right now for how long I know this post is going to be, and I’ll try to be as concise as I can. My background: I’m female, 40 years old, and my only major health issue was one bout of serious depression following a string of traumatic personal events. As you might guess, I was prescribed sertraline and therapy, which were thankfully very effective in treating the depression. Unfortunately, at the time I thought it might be a good idea to stay on the medication for maintenance, and have been on it now for 14 years. Hindsight is often 20/20, and I am certainly kicking myself now. I am currently weaning myself off of it, and this is the only daily medication I’ve been on.
As for my digestive health, I’ve always been regular, going once or twice daily, well-formed stools, no constipation, etc. Then one day about 5 years ago, I had diarrhea and have had it ever since. It literally happened overnight; one day everything was normal, and the next day, the diarrhea was there. We were in the final days leading up to moving 1200 miles to our new home, so a doctor visit right before the move didn’t make sense. When the diarrhea failed to dissipate, I started taking Metamucil, which has been the only thing to give a hint of relief, keeping my BMs from being completely watery. After some time, I did discuss it with my new doctor, and he prescribed Levsin. Of course it had no effect, so he had me try Bentyl, which also did nothing for me. For the time being, I gave up on it, and just continued with the Metamucil. Eventually, I changed doctors (for other reasons). Once I was comfortable with the new doctor, I addressed it again and was referred to a GI doctor. I had a colonoscopy and upper endoscopy with biopsies taken from both procedures. I have the beginnings of GERD in addition to the CC, and no signs of celiac. My GI doc prescribed Lialda, which I’ve been on for three weeks. He also prescribed Pantoprazole Sodium, which I filled but haven’t taken any of, since it’s a PPI, and I’m aware that PPIs can cause and worsen MC. Also, I am someone who needs to research the daylights out of things, and finding out about the life-threatening Stevens-Johnson syndrome (which can be a rare but possible side-effect of this medicine) really freaked me out! I’m not ready to die trying to prevent acid reflux, thank you very much! I’m not feeling lucky enough to chance it.
So far, I haven’t noticed any reduction in my symptoms. I had my follow-up with my GI doc on Thursday, and he seemed a little surprised that I haven’t had any improvement, but after all my reading here in the forums, I wasn’t really surprised. I’d be curious to know how quickly most people see improvement after starting Lialda. He wants me to continue it for another month. At first, he said if that didn’t work he would have me try Budesonide. I mentioned what I’ve read about the Pepto-Bismol treatment and its success rates as long as the treatment only lasts 8 weeks. His response was that he’s glad the literature specified a short treatment, because it’s toxic, and that it would be his last resort. We discussed some other things for a few minutes, and then he back-tracked, saying that if I still have no relief in a month, he’d have me try the Pepto-Bismol. What?! Okay... My husband said the doctor is probably shutting me up – if it works, fine, and if it doesn’t, I’ll be more likely to approach other treatments open-mindedly. I can accept that, but before I try any kind of steroid, I think I’d rather try the dietary approach or sensitivity testing. I do truly hope none of that will be necessary, that the sertraline is the cause of all this, and that once I’m completely off of it, things can really start to heal. I wish I didn’t have to taper down and could just stop, but I’ll have to be patient. I’m about half-way through the tapering process now.
One other thing I want to mention is my doctor’s reaction when I said that I hadn’t started taking the pantoprazole, due to my concerns about it being a PPI and why that’s a problem. He was typing on the computer while we talked and didn’t say anything about it, but I sensed that he probably wasn’t thrilled with my not following his orders. This was before we discussed the Pepto-Bismol, so I hadn’t primed him yet to the fact that I’m not exactly passive about these things. I would like to know what sorts of reactions some of you get from your doctors, and how best to tactfully handle the situation when they are supposed to be the trained experts but clearly don’t have all the necessary information, i.e. prescribing a PPI which is contra-indicated for MC patients. I would be really grateful for some feedback on this matter, as I feel a good relationship with one’s doctor has great influence toward successful treatment.
Again, I’m sorry for such a long introduction. This is a great forum, and I’m so thankful to have found it!
Newly diagnosed and new here
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome! You have come to the right place to help get your health back.
Like you, I was very normal and one day the water diarrhea started and didn't go away. I was diagnosed at the end of June this past summer, so I'm about 5 months into my healing.
If you haven't already changed your diet, that's a must. Not until I started a very restricted diet of no gluten, dairy, soy, and egg did I get relief. As you will read here, the only way to actually get yourself to remission is through diet changes. I followed a diet of chicken, rice, and banana (bland) for about a month and a half before I began to add a few things back in. I still don't have a wide variety, but once I did the Enterolab tests (to test for food sensitivities), I had a little better idea of what I could and couldn't add back in.
I can't answer your question about the medication (I'm now weaning off of Budesonide), but hopefully someone who has taken that will jump in.
Also, make sure you keep your Vitamin D3 levels up. You use a lot when your colon is inflamed, and magnesium is very important also.
Again, welcome to our Internet family, and please ask questions.
Like you, I was very normal and one day the water diarrhea started and didn't go away. I was diagnosed at the end of June this past summer, so I'm about 5 months into my healing.
If you haven't already changed your diet, that's a must. Not until I started a very restricted diet of no gluten, dairy, soy, and egg did I get relief. As you will read here, the only way to actually get yourself to remission is through diet changes. I followed a diet of chicken, rice, and banana (bland) for about a month and a half before I began to add a few things back in. I still don't have a wide variety, but once I did the Enterolab tests (to test for food sensitivities), I had a little better idea of what I could and couldn't add back in.
I can't answer your question about the medication (I'm now weaning off of Budesonide), but hopefully someone who has taken that will jump in.
Also, make sure you keep your Vitamin D3 levels up. You use a lot when your colon is inflamed, and magnesium is very important also.
Again, welcome to our Internet family, and please ask questions.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome!!!
no apologies for the post..... it is very similar to many before you...
yes. sadly, there are many here that have had similar experience with doctors / specialists and the like.
its not the doctors fault, it is the health system, they are just following the system that pays them.
and with the internet and huge availability of information to general public, the role of the doctor is changing ..
where to from here;
most here do 'informed self care' we need the doctors at times, so best not to alienate them or discard them.
Discernment, tact, sort of tell them what they want to hear or dont say anything....
for any issue, investigate the options, medications, surgery, functional approach and each individual makes a decision based on what suits best for them, financially, lifestyle, acceptance etc.. (you will see this via the various discussions here)
As you read through various posts you may have seen that there is no guaranteed solution, or quick fix, each person has to figure out their best fit management plan, eliminate as many triggers as possible, minimise the rest. (food, environmental, stress etc)
thanks to the sharing of knowledge, we can provide many short cuts and solutions that help the majority...
there is lots to digest (yep pun intended) grab a cuppa, relax and do some reading through the forum. use the search function on key words and you will see previous discussions, ask questions....
you are not alone.... your story is similar to many here...
no apologies for the post..... it is very similar to many before you...
yes. sadly, there are many here that have had similar experience with doctors / specialists and the like.
its not the doctors fault, it is the health system, they are just following the system that pays them.
and with the internet and huge availability of information to general public, the role of the doctor is changing ..
where to from here;
most here do 'informed self care' we need the doctors at times, so best not to alienate them or discard them.
Discernment, tact, sort of tell them what they want to hear or dont say anything....
for any issue, investigate the options, medications, surgery, functional approach and each individual makes a decision based on what suits best for them, financially, lifestyle, acceptance etc.. (you will see this via the various discussions here)
As you read through various posts you may have seen that there is no guaranteed solution, or quick fix, each person has to figure out their best fit management plan, eliminate as many triggers as possible, minimise the rest. (food, environmental, stress etc)
thanks to the sharing of knowledge, we can provide many short cuts and solutions that help the majority...
there is lots to digest (yep pun intended) grab a cuppa, relax and do some reading through the forum. use the search function on key words and you will see previous discussions, ask questions....
you are not alone.... your story is similar to many here...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome to the forum........
I know from my own recent experience what it was like to find this forum, a huge blessing. So pleased you found us. All of us understand your problem from first hand experience.
Jen
I know from my own recent experience what it was like to find this forum, a huge blessing. So pleased you found us. All of us understand your problem from first hand experience.
Jen
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hi PR,
Welcome to the discussion board. If your symptoms are going to resolve in response to stopping the PPI, they should fade away within about a week after you take your last dose of it. It takes about 3 days for PPIs to clear the body, and usually, if no food sensitivities exist, then symptoms will resolve soon after that. If you have been reacting to it for 5 years though, the odds of not developing food sensitivities by now are rather slim, unfortunately.
My take on the attitude of most doctors toward adverse side effect risks is that they tend to seriously downplay the risks. And it's easy to see why. Prescribing medications is what they are taught to do in order to treat patient symptoms, so for them, it's a necessary part of their daily routine. And virtually all of them certainly do want to help patients, if at all possible, so it's not surprising that they would try to ignore the adverse risks that go with most drugs. If they chose to dwell on the risks involved, they wouldn't be able to do their job (and they might not be able to sleep at night). They're caught between a rock and a hard place, because all drugs carry side effects risks. Some are just much worse than others.
When the FDA is deciding whether or not to approve a new drug, the most important question is not, "Is it safe?" No drugs are actually "safe". The real question is, "Do the benefits outweigh the adverse risks?"
Realistically, bismuth subsalicylate (the active ingredient in Pepto-Bismol) is certainly no more toxic than most of the drugs your doctor prescribes on a daily basis. But some doctors tend to hype the risks of over-the-counter drugs (which are generally considered safe, that's why the FDA classifies them as OTA) and downplay the risks associated with the drugs that they prescribe, because writing prescriptions is how they make their living. They feel the need to rationalize what they do.
IMO PPIs are an iatrogenic class of drugs that should be taken off the market, because they cause many different health problems that include osteoporosis, C. diff infections, poor digestion, and MC, to name a few. But doctors love to prescribe them, whether patients will actually benefit from them or not. And despite all the side effect risks of PPIs, most doctors incorrectly view them as safe drugs.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. If your symptoms are going to resolve in response to stopping the PPI, they should fade away within about a week after you take your last dose of it. It takes about 3 days for PPIs to clear the body, and usually, if no food sensitivities exist, then symptoms will resolve soon after that. If you have been reacting to it for 5 years though, the odds of not developing food sensitivities by now are rather slim, unfortunately.
My take on the attitude of most doctors toward adverse side effect risks is that they tend to seriously downplay the risks. And it's easy to see why. Prescribing medications is what they are taught to do in order to treat patient symptoms, so for them, it's a necessary part of their daily routine. And virtually all of them certainly do want to help patients, if at all possible, so it's not surprising that they would try to ignore the adverse risks that go with most drugs. If they chose to dwell on the risks involved, they wouldn't be able to do their job (and they might not be able to sleep at night). They're caught between a rock and a hard place, because all drugs carry side effects risks. Some are just much worse than others.
When the FDA is deciding whether or not to approve a new drug, the most important question is not, "Is it safe?" No drugs are actually "safe". The real question is, "Do the benefits outweigh the adverse risks?"
Realistically, bismuth subsalicylate (the active ingredient in Pepto-Bismol) is certainly no more toxic than most of the drugs your doctor prescribes on a daily basis. But some doctors tend to hype the risks of over-the-counter drugs (which are generally considered safe, that's why the FDA classifies them as OTA) and downplay the risks associated with the drugs that they prescribe, because writing prescriptions is how they make their living. They feel the need to rationalize what they do.
IMO PPIs are an iatrogenic class of drugs that should be taken off the market, because they cause many different health problems that include osteoporosis, C. diff infections, poor digestion, and MC, to name a few. But doctors love to prescribe them, whether patients will actually benefit from them or not. And despite all the side effect risks of PPIs, most doctors incorrectly view them as safe drugs.
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.
PR,
So sorry you had to find this website. The same thing happened to me but with an antibiotic. Know that you are not alone in this and we are all experiencing this together. Good luck on your journey and ask many questions. Everyone on here, can and will help you in any way possible.
So sorry you had to find this website. The same thing happened to me but with an antibiotic. Know that you are not alone in this and we are all experiencing this together. Good luck on your journey and ask many questions. Everyone on here, can and will help you in any way possible.
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
-
PhoenixRising
- Posts: 10
- Joined: Thu Nov 19, 2015 10:50 pm
Thank you all for the warm welcome and great input!
Jari, I have definitely given thought to diet changes and realize that it may be necessary. I’ve been trying to decide if I should do EnteroLab testing, but I’m not convinced that the tests will give me any better answers than diet changes would provide. When it comes to parting with that kind of money for the tests, I have more research and thinking to do. Seems like the diet changes and/or elimination diet are more tedious and take longer, but are also more accurate and, of course, less expensive. I have gotten myself back onto some vitamins and supplements, but I still need to add some Vitamin D3 on top of what’s in my multi. Also looking into topical magnesium, perhaps by way of Epsom salt soaks, as the lotions/oils seem pricey.
Gabes, when you said, “the role of the doctor is changing” you are so right. My GI doc is probably in his 60s, and so has likely been experiencing this transition. I’m sure that in his early days of practicing, patients had little or no access to information and not even knowing what questions to ask, were probably blindly obedient. I will say that overall I like him and his demeanor, and I hope to maintain a good relationship with him.
Jen, yes this forum is a blessing for sure! I’m happy I found it too. There is much learning and sharing to be done here. I’m finding it helpful, because as I’ve read here several times, no one really understands what this condition is like unless they have it. Just knowing that others can relate is somewhat comforting. I find myself wanting to talk about it and bounce ideas around. Then I realize that the people I would have those conversations with will eventually get sick of hearing about it, because they themselves are not running frantically to the bathroom and on the verge of not making it in time – several times a day! For the same reason, there is really little valuable input they could offer, no matter how much they care and would want to help. So, I pretty much keep it to myself, and find reassurance from the input I’ve seen here.
Tex, I should clarify that the medication that I’m weaning off of is sertraline, an SSRI. Considering that the half-life of the drug is 13-45 hours (average in women is 32 hours), I’m suspecting that it would take longer to clear my system… maybe as long as 2-3 weeks. Does that sound right?
I do fear that some sensitivities may have been triggered after such a long time of reacting to this medication, but I will remain optimistic, nonetheless. Time will tell, but I don't like waiting!
Martha, I'm sorry we're here too! It's crazy how some of these medicines affect some people so drastically, and have no effect at all on other people. As Lewis Black once said, "Everybody's health is different. What's good for one of you will kill the person sitting next to you. Every one of you has a health that is unique and totally different from everybody else... completely... because we... are all like snowflakes!" He might be onto something there. Hopefully we can all find a way out of this mess and get back to our normal, less "urgent" way of living.
Thank you everyone for listening, and for your time and very appreciated feedback.
Jari, I have definitely given thought to diet changes and realize that it may be necessary. I’ve been trying to decide if I should do EnteroLab testing, but I’m not convinced that the tests will give me any better answers than diet changes would provide. When it comes to parting with that kind of money for the tests, I have more research and thinking to do. Seems like the diet changes and/or elimination diet are more tedious and take longer, but are also more accurate and, of course, less expensive. I have gotten myself back onto some vitamins and supplements, but I still need to add some Vitamin D3 on top of what’s in my multi. Also looking into topical magnesium, perhaps by way of Epsom salt soaks, as the lotions/oils seem pricey.
Gabes, when you said, “the role of the doctor is changing” you are so right. My GI doc is probably in his 60s, and so has likely been experiencing this transition. I’m sure that in his early days of practicing, patients had little or no access to information and not even knowing what questions to ask, were probably blindly obedient. I will say that overall I like him and his demeanor, and I hope to maintain a good relationship with him.
Jen, yes this forum is a blessing for sure! I’m happy I found it too. There is much learning and sharing to be done here. I’m finding it helpful, because as I’ve read here several times, no one really understands what this condition is like unless they have it. Just knowing that others can relate is somewhat comforting. I find myself wanting to talk about it and bounce ideas around. Then I realize that the people I would have those conversations with will eventually get sick of hearing about it, because they themselves are not running frantically to the bathroom and on the verge of not making it in time – several times a day! For the same reason, there is really little valuable input they could offer, no matter how much they care and would want to help. So, I pretty much keep it to myself, and find reassurance from the input I’ve seen here.
Tex, I should clarify that the medication that I’m weaning off of is sertraline, an SSRI. Considering that the half-life of the drug is 13-45 hours (average in women is 32 hours), I’m suspecting that it would take longer to clear my system… maybe as long as 2-3 weeks. Does that sound right?
I do fear that some sensitivities may have been triggered after such a long time of reacting to this medication, but I will remain optimistic, nonetheless. Time will tell, but I don't like waiting!
I understand and agree.My take on the attitude of most doctors toward adverse side effect risks is that they tend to seriously downplay the risks. And it's easy to see why. Prescribing medications is what they are taught to do in order to treat patient symptoms, so for them, it's a necessary part of their daily routine. And virtually all of them certainly do want to help patients, if at all possible, so it's not surprising that they would try to ignore the adverse risks that go with most drugs. If they chose to dwell on the risks involved, they wouldn't be able to do their job (and they might not be able to sleep at night). They're caught between a rock and a hard place, because all drugs carry side effects risks. Some are just much worse than others.
When the FDA is deciding whether or not to approve a new drug, the most important question is not, "Is it safe?" No drugs are actually "safe". The real question is, "Do the benefits outweigh the adverse risks?"
Totally agree!Realistically, bismuth subsalicylate (the active ingredient in Pepto-Bismol) is certainly no more toxic than most of the drugs your doctor prescribes on a daily basis. But some doctors tend to hype the risks of over-the-counter drugs (which are generally considered safe, that's why the FDA classifies them as OTA) and downplay the risks associated with the drugs that they prescribe, because writing prescriptions is how they make their living. They feel the need to rationalize what they do.
Martha, I'm sorry we're here too! It's crazy how some of these medicines affect some people so drastically, and have no effect at all on other people. As Lewis Black once said, "Everybody's health is different. What's good for one of you will kill the person sitting next to you. Every one of you has a health that is unique and totally different from everybody else... completely... because we... are all like snowflakes!" He might be onto something there. Hopefully we can all find a way out of this mess and get back to our normal, less "urgent" way of living.
Thank you everyone for listening, and for your time and very appreciated feedback.
It may not take quite that long, but it does take a significant amount of time for the effects to fade away. A study based on radiolabeled sertraline (in 2 healthy males) showed that about 40-45% of the radioactivity was recovered in urine, and about 40-45% was recovered in feces, within 9 days. No unchanged sertraline was detectable in the urine, but 12-14% of unchanged sertraline was recovered in feces (during the 9-day period).PhoenixRising wrote:Tex, I should clarify that the medication that I’m weaning off of is sertraline, an SSRI. Considering that the half-life of the drug is 13-45 hours (average in women is 32 hours), I’m suspecting that it would take longer to clear my system… maybe as long as 2-3 weeks. Does that sound right?
You're very welcome.
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: Newly diagnosed and new here
I have been newly diagnosed with Collagenous Colitis. I thought I was "out of the woods" after I had my colonoscopy. It showed a clean bowel with no polyps. Then, when I went to see the GI doctor, he told me I had this condition. I said, "That doesn't sound good." He said doctors didn't know what to do with it. He thought I should take probiotics and Metamucil. I asked him what kind of diet I should be on. He said, "A heart healthy diet." He said, "Come back when you have pain." WOW! I don't think this specialist knows much about CC, and really doesn't care much how it affects me. So, I've been doing a lot of research on my own. That's how I found this forum. I have tried the probiotics he recommended, which this form doesn't. My stool is firmer, for now. I know it can change at any time. My past was that I had diarrhea for the month of January. It was truly awful with the new wardrobe addition of diapers and thick pads. I am a 75 year old woman who has suffered from depression, A-Fib, arthritis and lumbar pain. Now, I'm adding Collagenous Colitis to the mix?! It's overwhelming right now. I don't have the support I need from my doctor. I'm sure I will learn some things on this forum. Thanks for being here.
Re: Newly diagnosed and new here
Hello Carol,
Welcome to the group. At least your Doctor was honest about his lack of knowledge regarding this disease. Most gastroenterologists pretend that they know how to treat it, when unfortunately, they don't. You mentioned depression. Are you taking an antidepressant? Almost all of those medications are triggers for this disease, and resolving the symptoms requires weaning off the medication.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. At least your Doctor was honest about his lack of knowledge regarding this disease. Most gastroenterologists pretend that they know how to treat it, when unfortunately, they don't. You mentioned depression. Are you taking an antidepressant? Almost all of those medications are triggers for this disease, and resolving the symptoms requires weaning off the medication.
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.