Discouraged this morning. Had 5 days last week of high energy and feeling "normal" for first time in 6 months. I was constipated for the most part but still felt good.
Then beginning Saturday my bowels began to loosen and my energy started down. As of this morning I'm back to "mush" and very weak again. Havent had a budesonide for a week. I weaned off very slowly and gradually but now thinking maybe I am just one of those people who needs to stay on 1 or 2 pills a week from now on?
Tex I started on Zyrtec at your suggestion a couple of days ago. Just don't want this to get out of hand so that I have to go back on heavy dose of Budesonide. Wondering if I should just take one today. There's always Immodium, but I hate to go that route because it will shut me down completely for a few days and doesn't allow me to really know what's affecting me.
Amazes me how I can go almost directly from C to D and back to C again with nothing normal in the transition.
1 step forward and 2 back
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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grannykathy
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Hi Kathy,
The 3-step dance is part of the mystique of MC. Assuming that you started taking the Zyrtec as soon as you ended the budesonide (not after the relapse symptoms began), if Zyrtec hasn't worked within a couple of days, it's probably not going to work. See if a single capsule of budesoniode will arrest the relapse of symptoms. If it does, you may be right that you may need the small maintenance dose at least much longer, if not indefinitely. If it doesn't work, it will probably take a full dose for a few days to reverse the situation. This is probably a mast cell-based reaction, so Imodium would not be a practical solution, but of course it would be helpful if you needed to go somewhere.
But you've had a taste of success, so you know it's possible. My own reactions were always based on a cycle from D to C and back.
Tex
The 3-step dance is part of the mystique of MC. Assuming that you started taking the Zyrtec as soon as you ended the budesonide (not after the relapse symptoms began), if Zyrtec hasn't worked within a couple of days, it's probably not going to work. See if a single capsule of budesoniode will arrest the relapse of symptoms. If it does, you may be right that you may need the small maintenance dose at least much longer, if not indefinitely. If it doesn't work, it will probably take a full dose for a few days to reverse the situation. This is probably a mast cell-based reaction, so Imodium would not be a practical solution, but of course it would be helpful if you needed to go somewhere.
But you've had a taste of success, so you know it's possible. My own reactions were always based on a cycle from D to C and back.
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.
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grannykathy
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OK. The older antihistamines are more effective than the newer ones. If you have any Benedryl on hand, try a dose at bedtime and see how you feel in the morning. It might stop the D, but even if it doesn't, it will help you to sleep, and rest is important while recovering.
The main consideration about antihistamines is that they are not retroactive. They can prevent future antibodies from attaching to receptors, but they cannot undo the attachment of any antibodies already in circulation before they are taken.
You might still be able to nip this in the bud, but as I suggested before, just for insurance, I would try a capsule of budesonide. At this stage, it still might be able to take back control of the situation.
Tex
The main consideration about antihistamines is that they are not retroactive. They can prevent future antibodies from attaching to receptors, but they cannot undo the attachment of any antibodies already in circulation before they are taken.
You might still be able to nip this in the bud, but as I suggested before, just for insurance, I would try a capsule of budesonide. At this stage, it still might be able to take back control of the situation.
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.
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grannykathy
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Gabes-Apg
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I am another that spent a lot of time fluctuating between MC Mud and C.
Remind yourself, progress not perfection.
Healing takes a lot of energy, it will take months
What dose of Vit D3 and magnesium are you taking?
Remind yourself, progress not perfection.
Healing takes a lot of energy, it will take months
What dose of Vit D3 and magnesium are you taking?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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grannykathy
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- Joined: Fri Jun 08, 2018 12:21 pm
Gabes-Apg
Gabes,
Thanks for responding. I'm taking 4000 Vit-D and 200 oral magnesium and another 2-300 in the spray. Just came from my primary care Dr. about my blood pressure and we talked about the MC also. He is wondering if what I actually have is IBS rather than MC because of the fact that my diagnosis was "not definitive" according to the notes he got from my gastro doc. If it is IBS would that make a big difference in my treatment? Or is it possible that I have both? I get so confused because Im going to 3 different doctors right now and they all have their own ideas.
Gabes,
Thanks for responding. I'm taking 4000 Vit-D and 200 oral magnesium and another 2-300 in the spray. Just came from my primary care Dr. about my blood pressure and we talked about the MC also. He is wondering if what I actually have is IBS rather than MC because of the fact that my diagnosis was "not definitive" according to the notes he got from my gastro doc. If it is IBS would that make a big difference in my treatment? Or is it possible that I have both? I get so confused because Im going to 3 different doctors right now and they all have their own ideas.
Kathy, you cannot have "IBS". As I explained in my book, there is no such disease as IBS, despite the fact that doctors somehow manage to "diagnose" it often. "IBS" is the default diagnosis when a gastroenterologist fails to make a diagnosis. There are no official tests to detect "IBS". It's what remains when no disease can be officially found.
Years ago, gastroenterologists got frustrated and tired of admitting to patients that they didn't have the slightest idea what was wrong with them whenever then couldn't come up with a legitimate diagnosis. So they invented "IBS", a fictitious disease. Now, whenever no disease will meet the indications of any patient's tests, the doctor can proudly announce that they have "IBS". That sounds so much more professional than admitting that they don't have a clue as to what the actual problem might be. And they feel much better about ripping off the patient and his or her insurance company for an outrageous fee even though they were unable to provide one iota of benefit.
Many of us here started out with a "diagnosis" of "IBS" before our doctors eventually discovered the real problem, namely MC. When this discussion forum was originally created, a popular joke was:
What's the difference between IBS and MC?
The answer, of course, is "biopsies".
Tex
Years ago, gastroenterologists got frustrated and tired of admitting to patients that they didn't have the slightest idea what was wrong with them whenever then couldn't come up with a legitimate diagnosis. So they invented "IBS", a fictitious disease. Now, whenever no disease will meet the indications of any patient's tests, the doctor can proudly announce that they have "IBS". That sounds so much more professional than admitting that they don't have a clue as to what the actual problem might be. And they feel much better about ripping off the patient and his or her insurance company for an outrageous fee even though they were unable to provide one iota of benefit.
Many of us here started out with a "diagnosis" of "IBS" before our doctors eventually discovered the real problem, namely MC. When this discussion forum was originally created, a popular joke was:
What's the difference between IBS and MC?
The answer, of course, is "biopsies".
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.
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grannykathy
- Adélie Penguin
- Posts: 213
- Joined: Fri Jun 08, 2018 12:21 pm
Hi Kathy- your symptoms and your ‘2 steps forward, one back’ pattern is typical of MC. I also took Budesonide and found it helpful, then when I titrated off I would have several decent days followed by a rotten day complete with ‘mud’. I have seasonal allergies that definitely affect my GI tract and if my reflux gets active (like today) my gut will become active and produce mud or urgent bms. And I have the biopsies to show I’m in remission. But there are still variances and it’s a balancing act.
I also had a doctor suggest I had IBS when I was recovering. My symptoms had lessened because I was following the protocol here and making gains, but still had a significantly rough day about every 9 days. That has since resolved after a couple of years and looking back I believe it was part of the healing process, partly due to my reflux, and also stress related.
This is what recovery looks like. I think the doctor who said that to me just wasn’t aware of that aspect of recovery. They thought it should be linear but it’s not.
So just some ‘food for thought’ based on my own experiences. I think my doc was wrong- it wasn’t IBS- it’s the recovery from MC.
Carol
I also had a doctor suggest I had IBS when I was recovering. My symptoms had lessened because I was following the protocol here and making gains, but still had a significantly rough day about every 9 days. That has since resolved after a couple of years and looking back I believe it was part of the healing process, partly due to my reflux, and also stress related.
This is what recovery looks like. I think the doctor who said that to me just wasn’t aware of that aspect of recovery. They thought it should be linear but it’s not.
So just some ‘food for thought’ based on my own experiences. I think my doc was wrong- it wasn’t IBS- it’s the recovery from MC.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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grannykathy
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Thanks Carolm,
It does help to know others had the same experience I am having. I keep trying to figure it out. Like was it what I ate or was it stopping the Budesonide or was the antibiotic I had to go back on? I drive myself crazy with the questions. And then I just think, I'm not doing something right. Others had success because they did everything right with their diet andI just can't do it right. It helps to know that maybe its just the way it is and it will get better.
When you said "when I titrated off I would have several decent days followed by a rotten day complete with ‘mud’." So at that point did you go back on the Budesonide? And if so at what dosage?
It does help to know others had the same experience I am having. I keep trying to figure it out. Like was it what I ate or was it stopping the Budesonide or was the antibiotic I had to go back on? I drive myself crazy with the questions. And then I just think, I'm not doing something right. Others had success because they did everything right with their diet andI just can't do it right. It helps to know that maybe its just the way it is and it will get better.
When you said "when I titrated off I would have several decent days followed by a rotten day complete with ‘mud’." So at that point did you go back on the Budesonide? And if so at what dosage?
After I titrated off Budesonide I didn’t go back on. I had taken it for 4 1/2 months and it was causing constipation. At that point I had my diet in order (gf,sf,df,ef) and just worked the diet from that point on. After a year or so my doctor did try me on amitriptyline to see if that improved anything (by relaxing the contractions of the gut) and it was a little helpful in the short-term, but not a good med to be on for long. I stopped it after a year, when I felt it had run it’s course.
It’s easy to overthink it all. It’s taken me this long to see that it’s not always something I did wrong. Most days I can run errands and/or workout a little after work. But sometimes by the end of the week I may be a little more stressed or tired so running those same errands or doing that same workout might be just enough to get my gut to produce ‘mud’. Same diet, same routine, different response from my body. Could be fatigue, stress, allergies- so when that happens I just plan soft bland foods and a quiet evening indoors, resting up. I’m usually fine the next day. It will pass. I can tell you that I do recover from a setback more quickly than I did previously. So there’s that. It used to be that my rough days would wipe me out all day. Now I have maybe a rough 1/2 day, and it won’t ruin my whole day. I consider this progress. Gotta celebrate the small things, right?
So I hope this helps. We can make wise choices but we don’t have control over the pace of the healing process.
It’s easy to overthink it all. It’s taken me this long to see that it’s not always something I did wrong. Most days I can run errands and/or workout a little after work. But sometimes by the end of the week I may be a little more stressed or tired so running those same errands or doing that same workout might be just enough to get my gut to produce ‘mud’. Same diet, same routine, different response from my body. Could be fatigue, stress, allergies- so when that happens I just plan soft bland foods and a quiet evening indoors, resting up. I’m usually fine the next day. It will pass. I can tell you that I do recover from a setback more quickly than I did previously. So there’s that. It used to be that my rough days would wipe me out all day. Now I have maybe a rough 1/2 day, and it won’t ruin my whole day. I consider this progress. Gotta celebrate the small things, right?
So I hope this helps. We can make wise choices but we don’t have control over the pace of the healing process.
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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grannykathy
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So after my little relapse last weekend I did take 1 Budesonide and started taking Benedryl at night. I went back to being slightly constipated but still having a BM daily and my energy came back up for the most part. Some days better than others but still, compared to 2-3 wks ago I'm feeling much better. Feeling hopeful!