After having been a member for years - the time for me to reach out has finally come.
I’ll try to keep it short (but we all know it won’t really be), you can scroll down for “the problem” if you wish.
But so, celiac since birth, no problems until age 16. IBS for a year until diagnosed with MC. Back and forth with mediations and diets like all of us - but for the last 4-5 years I have been on 9 mg of Entocort a day, naturally GF no lactose, low fodmap, tons of fermented food etc - have had occasional flares but it's been manageable. The problem has been the dependency on Entocort - every attempt to cut down has quickly lead to bad flares, and so my Swedish doc planned to put me on azatioprin as I was getting problems with my blood sugar and anemia etc.
However, I moved to Amsterdam last year and get a rubbish doctor. I Informed him of all of this, but he distrusts my original doc and this past year has been hell. He has had me try to reduce the entocort twice- causing severe flares, gave me pills for stomach cramps - which ofc doesn’t fix anything, and had me drink psyllium husk like crazy - also resulting in a flare.
They finally did a colonoscopy - and strangely enough, results came back clean …I am left utterly confused. They just had me go down to 6 mg entocort again, resulting in a flare once more.
So now I am left with some questions:
1. He say the entocort doesn’t ‘hide’ the inflammation, and that the clean biopsy proves I am 'cured'. Is this the case? My thinking is that since entocort reduces inflammation, and I am stable on 9 mg, the biopsy, under these circumstances, would logically look good?
2. If this is indeed accurate, and my colitis is gone, why on earth does reducing my meds take me back to square one of my MC? And how do I proceed?
- The doctor’s only theory is that I am lactose intolerant - and I swear to God I almost punched him in the face. I haven’t had lactose for years, which I have to remind him of every time I see him. His overall idea is that I need to ‘bulk up my food’ and suggests I eat oatmeal……. I am obviously a bit frustrated.
I am to see him again end of aug, this time with the head of the gastro department. I just really need some tips, advice on what to say/suggest/confront them with. I don’t even know where to begin with this.
So yeah.. any thoughts, ideas? Would be much appreciated <3<3
Advice: Supposedly cured - But still have symptoms.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi CG,
Welcome to the forum!
I believe Tex will have some good comments. I am just a lay person with MC. Some thoughts...
1. How many biopsies did they take?
2. Have you read the pathology report yourself?
3. Can you get a Pathologist second opinion on the slides?
I'm thinking if they did not biopsy where you have active MC then you will show as healed. Perhaps
Tex can comment on this.
I believe the Swedish gastro docs are pretty highly respected when it comes to MC (compared to elsewhere in
the world.) I think there are a lot of studies going on in Sweden about MC. Perhaps google in Swedish
to see if there are any Swedish studies that support the long term use of Entocort. The Mayo clinic in
Minnesota is now ok with long term use of Entocort but it would be nice if you could get some European
studies to show long term use of Entocort is ok to show your Netherlands doc. I think after 5 posts
you can also search on our forum. I believe the top MC Swedish docs that are doing research have been discussed or mentioned
on our forum.
Welcome, Brandy
Welcome to the forum!
I believe Tex will have some good comments. I am just a lay person with MC. Some thoughts...
1. How many biopsies did they take?
2. Have you read the pathology report yourself?
3. Can you get a Pathologist second opinion on the slides?
I'm thinking if they did not biopsy where you have active MC then you will show as healed. Perhaps
Tex can comment on this.
I believe the Swedish gastro docs are pretty highly respected when it comes to MC (compared to elsewhere in
the world.) I think there are a lot of studies going on in Sweden about MC. Perhaps google in Swedish
to see if there are any Swedish studies that support the long term use of Entocort. The Mayo clinic in
Minnesota is now ok with long term use of Entocort but it would be nice if you could get some European
studies to show long term use of Entocort is ok to show your Netherlands doc. I think after 5 posts
you can also search on our forum. I believe the top MC Swedish docs that are doing research have been discussed or mentioned
on our forum.
Welcome, Brandy
http://www.emcg-ibd.eu/index.html
The European Microscopic Colitis Group was founded in Stockholm. The site might be worth a visit.
And...voila.....one study listed on site above.
Fernández-Bañares F, Gisbert JP. Letter: Persisting clinical symptoms in microscopic colitis in remission. Aliment Pharmacol Ther 2014;40:117-8.
Obviously there are enough people that have clinical symptoms that are technically in remission to fund
a study.
The European Microscopic Colitis Group was founded in Stockholm. The site might be worth a visit.
And...voila.....one study listed on site above.
Fernández-Bañares F, Gisbert JP. Letter: Persisting clinical symptoms in microscopic colitis in remission. Aliment Pharmacol Ther 2014;40:117-8.
Obviously there are enough people that have clinical symptoms that are technically in remission to fund
a study.
Print out studies to support what you want to try. i.e. If you want to stay on longterm Entocort print a study to support that.I just really need some tips, advice on what to say/suggest/confront them with. I don’t even know where to begin with this. So yeah.. any thoughts, ideas? Would be much appreciated <3<3
If you want to try cholestyramine print out studies on that etc.
Is going back to Swedish doc an option? We have a lot of idiot docs in Florida too.
Have you tried cholestyramine? This works for some folks.
Hi CG,
I won't waste my time pointing out that you have an unusually tough case — you already know that. Brandy has already covered some of the best ideas, and I agree with her that in general, Sweden's GI docs are probably some of the best trained in the world for treating MC.
Unless you are taking some other medication or supplement to treat another issue (and it's preventing your MC from going into remission), it looks as though you are already avoiding all the usual offenders.
Your assessment of the colonoscopy report is correct, I believe. It merely proves that you have been careful with your diet for the previous several years and the laboratory markers (diagnostic criteria) for MC are no longer present. That doesn't mean that you are cured, it means that the cellular histology in the mucosa of your colon has returned to normal because you have successfully eliminated the source of the corresponding inflammation (lymphocytic infiltration). It does not mean that you have eliminated all sources of inflammation, however.
We have to remember that the pathologist was looking for "the usual" markers of IBDs (IOW specific markers of cetain types of inflammation), not for inflammation in general. He or she was almost surely looking for atypical cellular architecture, lymphocytic infiltration, or thickened collagen layers in the lamina propria. He or she was almost surely not looking for evidence of bile acid malabsorption (BAM) or mast cell issues, which can be primary sources of inflammation. So I agree with Brandy that a trial with a bile acid sequestrant might be worth a try. If you've already tried that, what about mast cells? Did they do a mast cell count? If not, biopsy samples can be re-stained with a tryptase-based stain and examined under a microscope to determine the number of mast cells per high-power field. If the result is more than 20, you have mast cell inflammation. Entocort works (in my opinion) by suppressing mast cell inflammation.
Tex
I won't waste my time pointing out that you have an unusually tough case — you already know that. Brandy has already covered some of the best ideas, and I agree with her that in general, Sweden's GI docs are probably some of the best trained in the world for treating MC.
Unless you are taking some other medication or supplement to treat another issue (and it's preventing your MC from going into remission), it looks as though you are already avoiding all the usual offenders.
Your assessment of the colonoscopy report is correct, I believe. It merely proves that you have been careful with your diet for the previous several years and the laboratory markers (diagnostic criteria) for MC are no longer present. That doesn't mean that you are cured, it means that the cellular histology in the mucosa of your colon has returned to normal because you have successfully eliminated the source of the corresponding inflammation (lymphocytic infiltration). It does not mean that you have eliminated all sources of inflammation, however.
We have to remember that the pathologist was looking for "the usual" markers of IBDs (IOW specific markers of cetain types of inflammation), not for inflammation in general. He or she was almost surely looking for atypical cellular architecture, lymphocytic infiltration, or thickened collagen layers in the lamina propria. He or she was almost surely not looking for evidence of bile acid malabsorption (BAM) or mast cell issues, which can be primary sources of inflammation. So I agree with Brandy that a trial with a bile acid sequestrant might be worth a try. If you've already tried that, what about mast cells? Did they do a mast cell count? If not, biopsy samples can be re-stained with a tryptase-based stain and examined under a microscope to determine the number of mast cells per high-power field. If the result is more than 20, you have mast cell inflammation. Entocort works (in my opinion) by suppressing mast cell inflammation.
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.
Morning Guys,
Thank you so much for the pointers!
Called the office for my Swedish doc this morning, and got a phone consultation despite not being his patient anymore - I could hear the nurse raising her eyebrows when I said they’ve told me I’m ‘cured’.
I think my biggest concern is convincing the Dutch doctors that I still have MC - but I will do some looking around and hopefully the Swedish doc can help with this.
Brandy:
- To be honest I can’t really remember how many biopsies they took. The nurse was really keen on distracting me throughout the thing, but can distinctively remember two.
- And no, no report has been given to me, but now I will ask for them when I see them again!
- And my doc was very keen on getting me into a study as my case is so difficult. We thought fecal transplant to be at the most promising, but the ongoing studies (before I moved) only took patients with colitis due to other infections (HIV/AIDS mostly). I guess for the time I am in AMS further tries are put on hold.
- And thank you for the tapering trick! Have tried every second day 6, and every second 9 mg before - but a consistent 7.5 is definitely worth a go!
Tex:
- (And brandy): Have indeed tried BAM treatment, but unfortunately only made things worse :/ .
- I have been, and will start valdoxan again (but am not on it atm) - it is an atypical anti-depressant (shown to affect the bowls less). I have been on plenty of anti-depressant throughout the years (which I know is anything but good for the colitis, but since I have such problems with BPD and depressions, I just can’t manage without).
- This is also part of the reason my Swedish doc thought it’s worth giving azatioprin/Imuran a try. Since I have been on entocort for so long it is hard to tell if these are side-effect or not. But the main reason for the desired switch is that I am only just about stable on 9 mg. In order to ‘live life’ I end up eating very little to avoid symptoms, and thus constantly hang around the underweight mark. Also randomly qualifying for diabetes and the drastic drop of iron-levels pushed the recommendation a bit (have been on b-12 supplements for years alrdy).
- Mast cell count has never been mentioned - and looking around the forum it seems not any doctors are aware/look into it with MC. Will def bring that up. I am a bit puzzled though, I remember looking into it early on in my MC as I did become allergic to pollen around the same time. I take antihistamines on a daily basis most months of the year because of this, and if I drink wine, for example, I will have to make sure to take another. However, in difference to many of you here on the forum - I benefit a lot from (some) fermented foods. It wasn’t until I started making my own Kefir that I finally became stable on 9mg of entocort (before that I had more flares than remission on it). So, Kefir works but not sauerkraut (which aligns with the fodmap diet) and also tofu doesn’t work but tempeh does (the fermentation makes a huge difference in breaking down the soy). This is why fecal transplant became an interesting option.
As such, I assumed histamines to have an indirect rather than direct correlation to my MC, and a quick google only provides me this one study which indicates that Kefir does not affect mast cells, and is furthermore anti-inflammatory:
https://www.ncbi.nlm.nih.gov/m/pubmed/22293347/
Perhaps there is something to this?
Thank you so much for the pointers!
Called the office for my Swedish doc this morning, and got a phone consultation despite not being his patient anymore - I could hear the nurse raising her eyebrows when I said they’ve told me I’m ‘cured’.
I think my biggest concern is convincing the Dutch doctors that I still have MC - but I will do some looking around and hopefully the Swedish doc can help with this.Brandy:
- To be honest I can’t really remember how many biopsies they took. The nurse was really keen on distracting me throughout the thing, but can distinctively remember two.
- And no, no report has been given to me, but now I will ask for them when I see them again!
- And my doc was very keen on getting me into a study as my case is so difficult. We thought fecal transplant to be at the most promising, but the ongoing studies (before I moved) only took patients with colitis due to other infections (HIV/AIDS mostly). I guess for the time I am in AMS further tries are put on hold.
- And thank you for the tapering trick! Have tried every second day 6, and every second 9 mg before - but a consistent 7.5 is definitely worth a go!
Tex:
- (And brandy): Have indeed tried BAM treatment, but unfortunately only made things worse :/ .
- I have been, and will start valdoxan again (but am not on it atm) - it is an atypical anti-depressant (shown to affect the bowls less). I have been on plenty of anti-depressant throughout the years (which I know is anything but good for the colitis, but since I have such problems with BPD and depressions, I just can’t manage without).
- This is also part of the reason my Swedish doc thought it’s worth giving azatioprin/Imuran a try. Since I have been on entocort for so long it is hard to tell if these are side-effect or not. But the main reason for the desired switch is that I am only just about stable on 9 mg. In order to ‘live life’ I end up eating very little to avoid symptoms, and thus constantly hang around the underweight mark. Also randomly qualifying for diabetes and the drastic drop of iron-levels pushed the recommendation a bit (have been on b-12 supplements for years alrdy).
- Mast cell count has never been mentioned - and looking around the forum it seems not any doctors are aware/look into it with MC. Will def bring that up. I am a bit puzzled though, I remember looking into it early on in my MC as I did become allergic to pollen around the same time. I take antihistamines on a daily basis most months of the year because of this, and if I drink wine, for example, I will have to make sure to take another. However, in difference to many of you here on the forum - I benefit a lot from (some) fermented foods. It wasn’t until I started making my own Kefir that I finally became stable on 9mg of entocort (before that I had more flares than remission on it). So, Kefir works but not sauerkraut (which aligns with the fodmap diet) and also tofu doesn’t work but tempeh does (the fermentation makes a huge difference in breaking down the soy). This is why fecal transplant became an interesting option.
As such, I assumed histamines to have an indirect rather than direct correlation to my MC, and a quick google only provides me this one study which indicates that Kefir does not affect mast cells, and is furthermore anti-inflammatory:
https://www.ncbi.nlm.nih.gov/m/pubmed/22293347/
Perhaps there is something to this?
Brandy is just being modest — she has a lot of personal experience with regaining control of seeming relentless flares, and she knows her stuff — she knows what makes MC tick, and how it integrates into our lives.
Regarding taking antihistamines on a medium or long-term basis, please be aware that some authorities feel that taking antihistamines may be counterproductive in the long term because they (along with many other things) deplete diamine oxidase enzyme (DAO). (The body uses DAO to purge left over or excess histamine, so if DAO is deficient, histamine levels continue to build up.) For a long time, I was taking Allegra every day. I stopped using it, and after a few weeks, I believe I do much better without it. The site at the link below lists the causes of DAO deficiency:
https://www.amymyersmd.com/2017/10/hist ... tolerance/
Your symptoms suggest that you are magnesium deficient. IBDs and most of the drugs used to treat them deplete magnesium significantly, resulting in the symptoms of depression and anxiety. Been there, done that. Once I resolved my magnesium deficiency, I eliminated those symptoms. Please see my post about this issue that I wrote for another member this morning (post number 13 in the thread at the link below).
https://perskyfarms.com/phpBB2/viewtopic.php?t=24196
Magnesium and vitamin D work together (synergistically) to allow the immune system to function properly. Together, they are the fuel on which the immune system operates. With a deficiency or either one (or both) healing is severely compromised.
I find it interesting (though it doesn't surprise me at all) that your Swedish doctor is willing to try to help, even after you are out of the country. I'll bet the same could not be said for your Dutch doctor, but I'm just guessing.
Tex
Regarding taking antihistamines on a medium or long-term basis, please be aware that some authorities feel that taking antihistamines may be counterproductive in the long term because they (along with many other things) deplete diamine oxidase enzyme (DAO). (The body uses DAO to purge left over or excess histamine, so if DAO is deficient, histamine levels continue to build up.) For a long time, I was taking Allegra every day. I stopped using it, and after a few weeks, I believe I do much better without it. The site at the link below lists the causes of DAO deficiency:
https://www.amymyersmd.com/2017/10/hist ... tolerance/
Your symptoms suggest that you are magnesium deficient. IBDs and most of the drugs used to treat them deplete magnesium significantly, resulting in the symptoms of depression and anxiety. Been there, done that. Once I resolved my magnesium deficiency, I eliminated those symptoms. Please see my post about this issue that I wrote for another member this morning (post number 13 in the thread at the link below).
https://perskyfarms.com/phpBB2/viewtopic.php?t=24196
Magnesium and vitamin D work together (synergistically) to allow the immune system to function properly. Together, they are the fuel on which the immune system operates. With a deficiency or either one (or both) healing is severely compromised.
I find it interesting (though it doesn't surprise me at all) that your Swedish doctor is willing to try to help, even after you are out of the country. I'll bet the same could not be said for your Dutch doctor, but I'm just guessing.
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 CG,
I wanted to comment on the depression meds. I too had to get off my SSRI (Zoloft) in order to get my gut in check. I've had success using Abilify and Topamax. (I also struggle with bpd and depression)
Took me a bit of trial and error but there definitely are meds out there that aren't as stressful on your gut.
Good luck!
I wanted to comment on the depression meds. I too had to get off my SSRI (Zoloft) in order to get my gut in check. I've had success using Abilify and Topamax. (I also struggle with bpd and depression)
Took me a bit of trial and error but there definitely are meds out there that aren't as stressful on your gut.
Good luck!