Hi everyone. it has been awhile since I checked in. I'm still keeping busy with my MC. I actually decided to try to get a second opinion and see if another group of doctors could come up with a solution for me. In August I put myself thru the executive physical at Mayo Clinic. (I live in Minnesota and have the right insurance - at least for this year.) The GI doctors put me through extensive testing, colonoscopy, endoscopy, blood work, stool samples. They didn't see anything other than the MC which was good, I guess. They did have me stop my hormone therapy and my antidepressants. (I was put on hormone therapy to help with any bone loss issues due to long term use of budesonide.) anyhow now I am taking 3 625mg of Welchol twice a day. Initially I saw normal bowels, but that only lasted the first two days of treatment. Now I'm back to on and off Diarrhea. The plan is to stay on the Welchol for two months before they do any more testing. Now the additional issue I'm facing is terrible depression. Guess my antidepressant was doing some good for my mental state. They said that my SSRI might be the cause of the MC and it needed to be eliminated. I think I need to be on some sort of anti depressant but one that isn't a SSRI. It is almost funny, now that I'm depressed I don't even care if I leave the house or not. I take turns going from the toilet to the bed. It is a rather dismal situation. I've contacted my doctors at Mayo and asked them for some help with the depression piece. I certainly want to stop the diarrhea but non stop crying isn't helping anything
Has anyone else stopped SSRI antidepressants medications and found some alternative that didn't affect your colitis? Also has anyone had any experiance with Welchol?
Thanks for any thoughts.
O
Latest treatment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi O,
Sorry you are suffering.
At some point I would call the nurse at Mayo and tell them the Welchol is not working and see if they can switch you to cholestyramine (maybe give the Welchol 3-4 weeks). Cholestyramine is similar formula but instead of pill form it is a powder that you mix with water and drink. I was on it for 1 week. It worked so well I am now off of it. A number of users are having good results with it. Plus, it is cheap. I believe Polly has said you need to give the bile acide sequestrants--Welchol, cholestyramine etc a 4-6 week test before giving up on them. Be careful not to take the Welchol or choletyramine with food as that can cause absorption issues.
Did the budesonide work for you? I suspect chronic WD is as bad for bones as budesonide. Did Mayo run tests on what is causing your bone loss? There are a lot of women 50+ with osteoporosis that have not taken budesonide. How long were you on budesonide? What is Mayo's plan for bone loss due to WD? I guess what I'm getting at is if the bile acid sequestrants (Welchol and cholestyramine) don't work for you and budesonide worked for you is it an option to go back on budesonide again with hormones for a short term stint say 4-5-6 months while you work on the diet? IF you are off of the ssri then you should respond better to the budesonide. Be aware that hormonal changes can affect MC. Supplementary hormones can prevent remission.
Some folks respond to the pepto bismol protocol. Eight pepto bismol tablets per day for 6-8 weeks? Did Mayo bring this up as an option. Side effect of this protocol can be tinitis.
What does your diet look like? DIET IS VERY KEY TO MANAGING THIS DISEASE. Are you 100% GF and 100% dairy free? I find when I am in a flare I have to eat A LOT OF PROTEIN. The more protein I eat the less D I get. Also, high protein diet is very protective for bones. Walking, steps, weight bearing exercises are critical for bones.
I have never taken antidepressants and perhaps Tex can confirm but I believe that Wellbutrin is ok for us as an antidepressant.
Diet is very, very, very key. It takes a lot of protein to heal and to go into remission.
Since you have the good insurance for now can you have Mayo get you a prescription for physical therapist and have the physical therapist work with you on weights? These are very protective for maintaining bones. I'm 55 and lift weights with a trainer for my bones. My Florida gym is packed with ladies in their 70's and older lifting weights. They are all small women and I suspect have osteoporosis.
My experience is there is no magic bullet to solving this disease. I've been on budesonide (4.5 months), I've done the pepto treatment, I've been on cholestyramine. The drugs stabilize things as I work on the diet. I've had a 5 year stint of remission and I'm in remission now. I find stress management is very very key as well has diet.
If you don't already have Tex's book it is worth the money. Link is upper right hand corner.
Sorry you are suffering.
At some point I would call the nurse at Mayo and tell them the Welchol is not working and see if they can switch you to cholestyramine (maybe give the Welchol 3-4 weeks). Cholestyramine is similar formula but instead of pill form it is a powder that you mix with water and drink. I was on it for 1 week. It worked so well I am now off of it. A number of users are having good results with it. Plus, it is cheap. I believe Polly has said you need to give the bile acide sequestrants--Welchol, cholestyramine etc a 4-6 week test before giving up on them. Be careful not to take the Welchol or choletyramine with food as that can cause absorption issues.
Did the budesonide work for you? I suspect chronic WD is as bad for bones as budesonide. Did Mayo run tests on what is causing your bone loss? There are a lot of women 50+ with osteoporosis that have not taken budesonide. How long were you on budesonide? What is Mayo's plan for bone loss due to WD? I guess what I'm getting at is if the bile acid sequestrants (Welchol and cholestyramine) don't work for you and budesonide worked for you is it an option to go back on budesonide again with hormones for a short term stint say 4-5-6 months while you work on the diet? IF you are off of the ssri then you should respond better to the budesonide. Be aware that hormonal changes can affect MC. Supplementary hormones can prevent remission.
Some folks respond to the pepto bismol protocol. Eight pepto bismol tablets per day for 6-8 weeks? Did Mayo bring this up as an option. Side effect of this protocol can be tinitis.
What does your diet look like? DIET IS VERY KEY TO MANAGING THIS DISEASE. Are you 100% GF and 100% dairy free? I find when I am in a flare I have to eat A LOT OF PROTEIN. The more protein I eat the less D I get. Also, high protein diet is very protective for bones. Walking, steps, weight bearing exercises are critical for bones.
I have never taken antidepressants and perhaps Tex can confirm but I believe that Wellbutrin is ok for us as an antidepressant.
Diet is very, very, very key. It takes a lot of protein to heal and to go into remission.
Since you have the good insurance for now can you have Mayo get you a prescription for physical therapist and have the physical therapist work with you on weights? These are very protective for maintaining bones. I'm 55 and lift weights with a trainer for my bones. My Florida gym is packed with ladies in their 70's and older lifting weights. They are all small women and I suspect have osteoporosis.
My experience is there is no magic bullet to solving this disease. I've been on budesonide (4.5 months), I've done the pepto treatment, I've been on cholestyramine. The drugs stabilize things as I work on the diet. I've had a 5 year stint of remission and I'm in remission now. I find stress management is very very key as well has diet.
If you don't already have Tex's book it is worth the money. Link is upper right hand corner.
Hi O,
I just glanced at your first post and if you are still taking the Metagenics--ultrainflammx and fruits and greens eliminate them. We do best eating things without ingredient lists.
Be aware that some prescription drugs will prevent remission. Hormones can be one. SSRIs are another. There are others. If you are on a lot of prescriptions you might want to talk with Tex privately.
As a general rule, less is more when it comes to MC. Less prescriptions, less supplements, and the few food regimen.
I just glanced at your first post and if you are still taking the Metagenics--ultrainflammx and fruits and greens eliminate them. We do best eating things without ingredient lists.
Be aware that some prescription drugs will prevent remission. Hormones can be one. SSRIs are another. There are others. If you are on a lot of prescriptions you might want to talk with Tex privately.
As a general rule, less is more when it comes to MC. Less prescriptions, less supplements, and the few food regimen.
Thank you for responding to me Rockhopper Penguin,
A few things I should have mentioned in my post. I was diagnosed with CC MC a year ago. The first thing that was tried was the peptol bismol. I tried that for about 2 months with no success. Then they put me on budesonide. After three months they added azathioprine(lasted 1 week and had a reaction so removed it) but kept me on the budesonide another 4 months with no improvement. In Mid May I was put on lialda and again no improvement. Early summer I talked with my chiropractor and she had me try adding the Metagenics. I also stared eating gf,df, egg and soy free at the end of July. Nothing really seemed to work very well. The best I was able to get was frequent semi firm bowl movements. At least they weren't the WD always. In July my doctors put me on Lialda. There was no improvement.
Since going into Mayo they have had me go off all medications:hormones, anti depressants, omeprozol. The only exception was they left me on my thyroid meds. They said that I could eat whatever I want but I do know that certain foods make things much worse and I avoid them. The mayo doctors also wanted me to stop all supplements (metagenics) and vitamins, which I did. They said my blood work showed too much vitamin d.
I had osteopenia before ever starting the budesonide so my gynocologist had recommended the hormones when she found out I was taking budesonide. Now Mayo has me off these as well. I do work at trying to keep a fitness regiment going. I use my Fitbit and make sure I log 10,000 sets daily. I also do some weight lifting on my own 2-3 times weekly. I've been pretty good at maintain my regiment until the last few weeks when my depression has really kicked in. A trainer would be a good idea if I can get my insurance to help with the fees.
One interesting thing is that I had one time that my bowel movements were normal. That was when I was taking the azathioprine with the budesonide. Unfortunately it also made me feel like I had the flu.discouraging.
I don't expect to have access to Mayo beyond December so I thought I should give them a try. They seem like they are taking my CM more seriously than the last GI who treated like an inconvience. I'm still finding it very interesting that they aren't suggesting any dietary changes. I will see what happens. Either way I know I need to find an antidepressant that does exacerbate the CM.
Thanks again
A few things I should have mentioned in my post. I was diagnosed with CC MC a year ago. The first thing that was tried was the peptol bismol. I tried that for about 2 months with no success. Then they put me on budesonide. After three months they added azathioprine(lasted 1 week and had a reaction so removed it) but kept me on the budesonide another 4 months with no improvement. In Mid May I was put on lialda and again no improvement. Early summer I talked with my chiropractor and she had me try adding the Metagenics. I also stared eating gf,df, egg and soy free at the end of July. Nothing really seemed to work very well. The best I was able to get was frequent semi firm bowl movements. At least they weren't the WD always. In July my doctors put me on Lialda. There was no improvement.
Since going into Mayo they have had me go off all medications:hormones, anti depressants, omeprozol. The only exception was they left me on my thyroid meds. They said that I could eat whatever I want but I do know that certain foods make things much worse and I avoid them. The mayo doctors also wanted me to stop all supplements (metagenics) and vitamins, which I did. They said my blood work showed too much vitamin d.
I had osteopenia before ever starting the budesonide so my gynocologist had recommended the hormones when she found out I was taking budesonide. Now Mayo has me off these as well. I do work at trying to keep a fitness regiment going. I use my Fitbit and make sure I log 10,000 sets daily. I also do some weight lifting on my own 2-3 times weekly. I've been pretty good at maintain my regiment until the last few weeks when my depression has really kicked in. A trainer would be a good idea if I can get my insurance to help with the fees.
One interesting thing is that I had one time that my bowel movements were normal. That was when I was taking the azathioprine with the budesonide. Unfortunately it also made me feel like I had the flu.discouraging.
I don't expect to have access to Mayo beyond December so I thought I should give them a try. They seem like they are taking my CM more seriously than the last GI who treated like an inconvience. I'm still finding it very interesting that they aren't suggesting any dietary changes. I will see what happens. Either way I know I need to find an antidepressant that does exacerbate the CM.
Thanks again
Mistake on the Lialda.
I took the Lialda thru out the summer along with dietary changes and the metagenics. So much different stuff that I'm getting confused!
One more question
Rockhopper Penguin,
Here you taking anything else along with the cholestyramine? He'd you tried other things before this?
I will suggest trying that if I don't see some changes soon.
Here you taking anything else along with the cholestyramine? He'd you tried other things before this?
I will suggest trying that if I don't see some changes soon.
O,
The reason why you have depression is because you have a magnesium deficiency. At least 80 % of the general population has magnesium deficiency and that becomes much worse for IBD patients because IBDs (including MC) deplete magnesium. In addition, all corticosteroids (including budesonide) deplete magnesium. The more magnesium deficient you become, the worse your depression and anxiety issues will become. Been there, done that.
Research shows that magnesium treats all of those issues, but doctors never prescribe magnesium — they are trained to prescribe drugs, not simple, cheap treatments that actually work much better than drugs in many cases.
As Brandy pointed out, to resolve your MC issues, strict adherence to a diet that totally avoids all of your food (and drug) sensitivities is necessary. And it takes a while to heal the gut so that the reactions stop. Medications can mask the symptoms, but if anything in your diet causes your immune system to produce antibodies, the inflammation is regenerated with every meal, thus perpetuating the MC symptoms.
It's a crying shame that the GI department at the Mayo still doesn't understand how to treat MC, after all these years.
I hope that some of this is helpful.
Tex
The reason why you have depression is because you have a magnesium deficiency. At least 80 % of the general population has magnesium deficiency and that becomes much worse for IBD patients because IBDs (including MC) deplete magnesium. In addition, all corticosteroids (including budesonide) deplete magnesium. The more magnesium deficient you become, the worse your depression and anxiety issues will become. Been there, done that.
Research shows that magnesium treats all of those issues, but doctors never prescribe magnesium — they are trained to prescribe drugs, not simple, cheap treatments that actually work much better than drugs in many cases.
As Brandy pointed out, to resolve your MC issues, strict adherence to a diet that totally avoids all of your food (and drug) sensitivities is necessary. And it takes a while to heal the gut so that the reactions stop. Medications can mask the symptoms, but if anything in your diet causes your immune system to produce antibodies, the inflammation is regenerated with every meal, thus perpetuating the MC symptoms.
It's a crying shame that the GI department at the Mayo still doesn't understand how to treat MC, after all these years.
I hope that some of this is helpful.
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.
Hi O,
I went to the Mayo Clinic for a second opinion, in 2013, and all they suggested was budesonide daily and no diet changes. I tried that for awhile and eventually found this group. After I made diet changes, and last year started the regular cholestyramine powder by Sandoz, I have had much better symptom control. I still have some symptoms but life is much more manageable.
I have been taking cholestyramine for the past year, and take it with meals to bind the bile acids which is per product directions. I have only found that it is taken between meals when it is used to treat biotoxins.
Hope you get some suggestions for treating your depression, there has been discussed on the forum in the past, you could try doing a topic search.
I went to the Mayo Clinic for a second opinion, in 2013, and all they suggested was budesonide daily and no diet changes. I tried that for awhile and eventually found this group. After I made diet changes, and last year started the regular cholestyramine powder by Sandoz, I have had much better symptom control. I still have some symptoms but life is much more manageable.
I have been taking cholestyramine for the past year, and take it with meals to bind the bile acids which is per product directions. I have only found that it is taken between meals when it is used to treat biotoxins.
Hope you get some suggestions for treating your depression, there has been discussed on the forum in the past, you could try doing a topic search.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Hi O,
It sounds like you have been through a lot.
I was going to mention magnesium for depression. Since you are struggling gut wise I would consider epsom salt baths, epsom salt foot baths or the spray magnesium oil (my least favorite but a lot of people like this.) as a magnesium delivery system.
Diet changes can take awhile if you have suffered for awhile. Give GF/DF 12 weeks. You should see improvements.
Suggest read Gabes Stage 1 diet info on our forum. Hopefully she can link it.
Less is more. When I'm stuggling I eliminate oral supplements for awhile.
It takes awhile for the gut to heal.
It sounds like you have a good fitness plan and that should help with depression also.
It sounds like you have been through a lot.
I was going to mention magnesium for depression. Since you are struggling gut wise I would consider epsom salt baths, epsom salt foot baths or the spray magnesium oil (my least favorite but a lot of people like this.) as a magnesium delivery system.
Diet changes can take awhile if you have suffered for awhile. Give GF/DF 12 weeks. You should see improvements.
Suggest read Gabes Stage 1 diet info on our forum. Hopefully she can link it.
Less is more. When I'm stuggling I eliminate oral supplements for awhile.
It takes awhile for the gut to heal.
It sounds like you have a good fitness plan and that should help with depression also.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71 This is worth a read. It is our success story section.
Thanks everyone.
I will try to find the magnesium spray. I have been taking Epsom salt baths. I wonder how many I need to take? One daily? I was taking Doctors Best chelated magnesium but I stopped when they told me to stop all supplements. It seems like the spray and baths aren't going against their advice. Where does one find the spray magnesium? How long before you found some relief Tex?
I think I will try the diet as well. I know raw veggies and fruits kick my system into overdrive.
Thanks again for the recommendations and listening.
O
I will try to find the magnesium spray. I have been taking Epsom salt baths. I wonder how many I need to take? One daily? I was taking Doctors Best chelated magnesium but I stopped when they told me to stop all supplements. It seems like the spray and baths aren't going against their advice. Where does one find the spray magnesium? How long before you found some relief Tex?
I think I will try the diet as well. I know raw veggies and fruits kick my system into overdrive.
Thanks again for the recommendations and listening.
O
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
in line with Brandy's reply above
following the right eating plan and taking the right supplements, VIt D and magnesium can help to resolve alot of your issues, both the digestion and the depression
here is a link to the eating plan that Brandy suggested
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328
if you spend some time reading some of the success stories, you will also see where the eating plan that we suggest along with Vit d and magnesium has helped others, the reason we strongly recommend it is because it works!
of note - if you continue to take the Welchol, it will further deplete magnesium and impact the absorption of Vit D3.
following the right eating plan and taking the right supplements, VIt D and magnesium can help to resolve alot of your issues, both the digestion and the depression
here is a link to the eating plan that Brandy suggested
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328
if you spend some time reading some of the success stories, you will also see where the eating plan that we suggest along with Vit d and magnesium has helped others, the reason we strongly recommend it is because it works!
of note - if you continue to take the Welchol, it will further deplete magnesium and impact the absorption of Vit D3.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
For foot bath https://www.amazon.com/Inomata-Foot-Det ... ath+bucket; I've been using 1/2 cup epsom salts. I heat some stove water, let it cool, pour in Japanese bucket.
Since I stopped oral mag I've either done the foot bath, body bath or spray oil daily. It really helps with the stress.
Body bath use 2 cups epsom salts.
Spray oil--I'll defer to others for recommendations.
Lately I've been doing foot bath daily as it seems the easiest.
The Japanese bucket technique is very manageable and I can stick the bucket in my garage when done.
Since I stopped oral mag I've either done the foot bath, body bath or spray oil daily. It really helps with the stress.
Body bath use 2 cups epsom salts.
Spray oil--I'll defer to others for recommendations.
Lately I've been doing foot bath daily as it seems the easiest.
The Japanese bucket technique is very manageable and I can stick the bucket in my garage when done.
After doubling my magnesium intake to 500—600 Mg per day (divided into several doses scattered through the day), plus magnesium oil, I was much better after a couple of days, but it took several months to resolve most of my symptoms. After a month or so I reduced my supplement to 400—500 mg per day and stopped using the magnesium oil regularly. These days (over a year later) I take about 400 mg per day (which is the RDA for men).O wrote:How long before you found some relief Tex?
And it took almost a year to get rid of my most persistent symptom, but after I rebuilt my magnesium reserves this finally resolved a breathing problem that I had been dealing with for 10 years. For 10 years I couldn't take a deep breath when I felt I needed to. It was similar to having asthma except that there was no wheezing. Doctors thought I was nuts when I asked them about the problem. But getting rid of my chronic magnesium deficiency finally got rid of that symptom and now I can breathe normally again.
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.