Hello,
I am new to this forum. This is rather long, so please bear with my nitty gritty details I began having D toward the end of 2016. Since the D didn't go away or improve, I finally went to a gastroenterologist in March and he said I probably had IBS. He put me on Dicyclomine, which didn't help the D. The doctor then said I might have microscopic colitis which was confirmed by a colonoscopy in April showing I had collagenous colitis. Up to this time, I was managing the D pretty well because I would have an average of 3 or so per day, usually early in the day, and then could go about my daily routine as usual. So the dr. didn't change my medication. But around the middle of May (after an emotional upset), my D became worse and I started having neck stiffness and pain, eye inflammation, nausea, and was running a low-grade fever (99-101). I had read that patients with microscopic colitis could have joint pain and issues with eyes, so I made an appointment to go to the same doctor, expecting him to change my medication. He examined me, said I had an elevated heart rate, totally ignored anything to do with MC even though my D had increased, said I had probably picked up a bug, denied that I had fever even though the nurse had recorded 101 when I arrived, told me to reduce the dicyclomine, and sent me to a pcp to have an EKG. The EKG came out normal. The only good thing that came about with the pcp is I did get steroid eye drops for my eyes which cleared up the pink eye. (I have since had days where my eyes still get a little red, but not to the same extent as in May.) This pcp did blood work, and there were no inflammatory markers or any indication that anything was wrong with me. A few days later my r. shoulder began hurting, the pain so severe that I couldn't put my r. hand behind my head, then a little later my left knee became stiff, painful, and swollen. So I now had neck, shoulder, and knee problems. I went to a rheumatologist again asking as I did the gastroenterologist if this was connected with colitis. He said it could be, but thought it had more to do with someone with Crohn's than CC. He focused more on my knee by draining fluid from it and then gave me a steroid injection. That definitely brought my knee back to pretty much normal. He also did blood work which all came out great except my platelet count was a little high, which he said wasn't serious. He ignored my shoulder problems. He ordered X-rays which did reveal arthritis in my neck. I suspect I had had that for a while because I sensed a grinding sensation (before my cc diagnosis) when I would turn my head, but it never bothered me to the point of hurting or stiffness until my body became inflamed in May. I was trying to get him to say, yes, this pain you're having is due to collagenous colitis, but he never did, I guess b/c he thought since the blood tests were all good, he couldn't really pinpoint a problem. At this time, neck is still painful and stiff, shoulder is better but still not pain free, and now my right knee is swollen just like my left knee was. Yesterday morning I could hardly walk because I was having such a sharp pain in my right leg, but as the day progressed, it got better. I really believe all this is connected with CC because until I began having D, I was super healthy...hardly ever took a pill for anything. But since May, I feel like everything is going haywire. I have also had a tingling sensation around my left ear, which sounds crazy, but nevertheless, I have had it off and on for the last few weeks. So at this point, I plan to go the rheumatologist again and let him drain the fluid in my right knee and possibly get a steroid injection. I sometimes feel that I am having rather severe symptoms when it comes to non-digestive issues, and the body aches/pains is what is getting to me more than the D.
I felt that I was treated so poorly by the first gastroenterologist that I did change to one at Houston Methodist. He put me on budesonide beginning 6/1...the typical 9 mg for 90 days. I have been on budesonide for over 6 weeks and am stilling having D, along with the aforementioned joint pain. After reading this forum, I feel like I should just get off it. I don't really like taking a steroid to begin with but thought I'd give it a try, watch my diet, and maybe by the time I got off it I would be better. But obviously if it isn't going to help, there's no point in taking it. I plan to make an appt. this week to see both the GI doc and the rheumatologist.
After reading some of the posts from this great forum, I am thinking of getting off the budesonide, stick with the elimination diet, take antihistamines (I have also had a slight rash/itching), and take magnesium and vitamin D. I currently take 600mg of calcium with 400 iu of Vitamin D, as I have osteopenia. I also take a Nature Made Super B complex tablet. I recently purchased elemental magnesium, 400 mg (requires 2 tablets). I wondered how much calcium, magnesium, and Vitamin D I should take as I believe Tex had mentioned taking equal amounts of calcium and magnesium. Also, I was curious about the low FODMAP diet and your thoughts on that. I welcome any comments/recommendations. Thank you!
Collagenous Colitis with joint pain
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our Internet family. I can remember when I had arthritis so bad in my knees that on the really bad days I had to use 2 canes, just to get around. I don't remember where I stored those canes, because that was 17 years ago and I haven't needed them since soon after changing my diet. My fingers are still crooked and twisted as proof that they were once badly inflamed, but the arthritis is completely gone. You can help your joints by taking glucosamine and chondroitin, and taking flax seed oil will also help. But to eliminate the problem completely, nothing beats adopting a gluten-free and casein-free diet.
A lot of diets can be used as a starting place, but to successfully take your life back from the CC, you really need to select a diet that's custom designed just for you. And incidentally, yes, you are correct, most of those satellite issues such as arthritis are associated with (and due to) the CC. The shoulder pain might also be from taking calcium supplements and vitamin D while having a chronic magnesium deficiency. "How can that be"?, you might ask. Here's what can happen:
Almost everyone already has enough calcium in their diet without taking a calcium supplement. Taking calcium obviously will raise blood levels, especially if you also take vitamin D to help absorb the calcium. The problem that this creates is that calcium levels must be very carefully regulated in the blood to avoid cardiovascular risks. The body normally uses magnesium together with insulin to transport the calcium from the blood to the cells of the body where it is needed (such as in the bones). If either insulin or magnesium levels are unable to keep up with the demand, the calcium must be "dumped" somewhere in order to get it out of the blood to prevent a buildup that could cause a heart attack if it gets high enough. Sometimes it is dumped in joints or organs to cause the problem you describe with your shoulder. The doctors call it bursitis or some other name, drain the joint and/or inject cortisone and charge you for giving you bad advice in the first place (to take a calcium supplement).
The solution — take magnesium instead of calcium, there's probably plenty of calcium already in your diet. The RDA for magnesium is 320 for women, and taking that is a good place to start. Doing this will treat your osteopenia and prevent calcium deposits in your joints. But back to treating the CC: the first step is to cut out all gluten and casein. Minimize fiber and sugar, and peel and overcook all vegetables. No raw vegetables or fruit, except bananas. You'll learn as you go.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. I can remember when I had arthritis so bad in my knees that on the really bad days I had to use 2 canes, just to get around. I don't remember where I stored those canes, because that was 17 years ago and I haven't needed them since soon after changing my diet. My fingers are still crooked and twisted as proof that they were once badly inflamed, but the arthritis is completely gone. You can help your joints by taking glucosamine and chondroitin, and taking flax seed oil will also help. But to eliminate the problem completely, nothing beats adopting a gluten-free and casein-free diet.
A lot of diets can be used as a starting place, but to successfully take your life back from the CC, you really need to select a diet that's custom designed just for you. And incidentally, yes, you are correct, most of those satellite issues such as arthritis are associated with (and due to) the CC. The shoulder pain might also be from taking calcium supplements and vitamin D while having a chronic magnesium deficiency. "How can that be"?, you might ask. Here's what can happen:
Almost everyone already has enough calcium in their diet without taking a calcium supplement. Taking calcium obviously will raise blood levels, especially if you also take vitamin D to help absorb the calcium. The problem that this creates is that calcium levels must be very carefully regulated in the blood to avoid cardiovascular risks. The body normally uses magnesium together with insulin to transport the calcium from the blood to the cells of the body where it is needed (such as in the bones). If either insulin or magnesium levels are unable to keep up with the demand, the calcium must be "dumped" somewhere in order to get it out of the blood to prevent a buildup that could cause a heart attack if it gets high enough. Sometimes it is dumped in joints or organs to cause the problem you describe with your shoulder. The doctors call it bursitis or some other name, drain the joint and/or inject cortisone and charge you for giving you bad advice in the first place (to take a calcium supplement).
The solution — take magnesium instead of calcium, there's probably plenty of calcium already in your diet. The RDA for magnesium is 320 for women, and taking that is a good place to start. Doing this will treat your osteopenia and prevent calcium deposits in your joints. But back to treating the CC: the first step is to cut out all gluten and casein. Minimize fiber and sugar, and peel and overcook all vegetables. No raw vegetables or fruit, except bananas. You'll learn as you go.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Saphire
welcome!! (and sympathies that you had to find us)
whether to stay on the budenside or go off it is up to you, if you do stop please do it very gradually (doctors are unlikely to recommend this) we have some info on this if you are interested.
one reason to stay on it, is that it is a good protection while you fine tune your eating plan - along the lines of the suggestions that Tex has made above. And also start taking the key nutrients like magnesium, Vit D3, Active B's etc and increase these levels in your body, this will also help the process when you taper off the budenside.
I can assure you, that your joint pains will resolve with the right eating plan and when you take/use magnesium.
Eating plan wise, what I have seen over the years is that no fixed eating plan like low Fodmaps, SCD, Wahls, Bulletproof etc works for everyone. we can use the foundations of these eating plans, but adjust/tweak them to individual ingredients that suit the individual.
one key thing during the early stages of healing, low fibre, bland, well cooked veges and proteins settle best and optimise healing. We have lots of posts and discussions on this.
some good areas to do further reading
Guidelines to Recovery area - eating plan info
http://perskyfarms.com/phpBB2/viewforum.php?f=79
Member Success Stories - to see what others have done - what worked, how long it took etc
http://perskyfarms.com/phpBB2/viewforum.php?f=71
and if you use the search function - you will see many previous discussions about joint pain with CC/LC - you are not the first.
hope this helps
this post has information about tapering off budenside
http://perskyfarms.com/phpBB2/viewtopic.php?t=22330
welcome!! (and sympathies that you had to find us)
whether to stay on the budenside or go off it is up to you, if you do stop please do it very gradually (doctors are unlikely to recommend this) we have some info on this if you are interested.
one reason to stay on it, is that it is a good protection while you fine tune your eating plan - along the lines of the suggestions that Tex has made above. And also start taking the key nutrients like magnesium, Vit D3, Active B's etc and increase these levels in your body, this will also help the process when you taper off the budenside.
I can assure you, that your joint pains will resolve with the right eating plan and when you take/use magnesium.
Eating plan wise, what I have seen over the years is that no fixed eating plan like low Fodmaps, SCD, Wahls, Bulletproof etc works for everyone. we can use the foundations of these eating plans, but adjust/tweak them to individual ingredients that suit the individual.
one key thing during the early stages of healing, low fibre, bland, well cooked veges and proteins settle best and optimise healing. We have lots of posts and discussions on this.
some good areas to do further reading
Guidelines to Recovery area - eating plan info
http://perskyfarms.com/phpBB2/viewforum.php?f=79
Member Success Stories - to see what others have done - what worked, how long it took etc
http://perskyfarms.com/phpBB2/viewforum.php?f=71
and if you use the search function - you will see many previous discussions about joint pain with CC/LC - you are not the first.
hope this helps
this post has information about tapering off budenside
http://perskyfarms.com/phpBB2/viewtopic.php?t=22330
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you Tex and Gabes for the welcome and the information. I will definitely heed your advice as, just like everyone else, I want to improve as much as possible.
Gabes, the newsletter was very informative about coming off budesonide, and I will def ask my doc about tapering off. As it stands now, my prescription is for 3 capsules for 90 days. My follow up appt. isn't until a week past my last dose. So I am going to check on that as well as letting them know that so far it hasn't helped.
Have a wonderful day!
Gabes, the newsletter was very informative about coming off budesonide, and I will def ask my doc about tapering off. As it stands now, my prescription is for 3 capsules for 90 days. My follow up appt. isn't until a week past my last dose. So I am going to check on that as well as letting them know that so far it hasn't helped.
Have a wonderful day!