Hi! I'm new to this and have so many questions so please excuse my ramblings!!!
This all started with an initial diagnosis of c-diff. Until I caught that, I would go to the bathroom maybe once or twice a week but never felt constipated or the need to go. That was just my normal. Then one day I just started having diarrhea, mostly in the morning, ending by noon or so. When I finally went to the doctor's it was c-diff but after a course of antibiotics, it didn't go away. They retested twice with both coming back negative so they did a colonoscopy. That came back first with a general microscopic colitis and then a more defined lymphocytic colitis. They immediately put me on Budesonide which did work at stopping the diarrhea but not I'm constantly constipated! Not going before was never an issue and now I can't stand it! I just had my first appointment back with the doctor after being on this stuff for a month and her answer was "well it sounds like you're back to where you were." NO this is not where I was and no matter how many times I told her this wasn't the same, she kept going back to that or saying it might level out after the full course of meds (I have another 4 weeks left) once the inflammation has subsided. From what I've seen on this site, the Budesonide doesn't alleviate the inflammation, only masks the symptoms so in my head this woman has no idea what she's talking about. Is she right or not?? She did admit that there's not much known about LC so I told her to check out the foundation :)
The second part of my issue is that I was given the catch-all diagnosis of Fibromyalgia about 8 years ago. After reading the articles here, so many of my symptoms can be explained by LC! How long can someone have this without knowing it?? Could the c-diff have triggered something that has always been there and may have never been found out otherwise? Are there any treatment options besides self-treatment with diet because so far, my experience with doctors hasn't been very helpful. I had gone GF a couple of years ago after realizing many of the Fibro symptoms were the same as those of gluten sensitivity. I actually got off my Fibro meds and was doing pretty well without them until this all started. Unfortunately I was so hungry while I had c-diff that I'd eat anything I could get my hands on so my diet suffered. I'm getting back on track and seeing an improvement in how I feel, but of course the meds are masking any digestive progress the diet might be making.
I guess I'm just looking for a reliable resource, someone to put all the pieces together and maybe finally, after all these years, come up with the right answer! Any help, recommendations, personal experiences will be much appreciated!
New Diagnosis
Moderators: Rosie, JFR, Dee, xet, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Hello Jenna,
Welcome to our Internet family. MC has a lot of predisposing conditions that can make it an accident waiting to happen (that is, waiting for a final trigger). In your case, the C. diff was the final straw. For some of us MC seems to suddenly appear out of nowhere, while for others, it appears to develop slowly. It's a complex disease and it seems to affect everyone differently
Your doctor at least knows enough to prescribe budesonide to treat diarrhea-predominant MC. Apparently she doesn't understand that budesonide can be constipating when the dose is excessive. Constipation is a clear sign that it's time to lower your budesonide dose. It won't "level out". If you don't lower the dose the constipation can only get worse.
Yes, the budesonide will mask your symptoms, but you need to be avoiding the foods that are likely triggers so that your intestines can do enough healing that you won't relapse when the budesonide treatment is completed. Then after you have been in stable remission for a while you can begin to test some foods back into your diet (one at a time of course) to see if you can tolerate them. But gluten will always be a permanent problem for maybe 99 % of us.
Another possibility with the fibromyalgia is the fact that magnesium deficiency is often misdiagnosed as fibromyalgia. These days, most people in the general population are magnesium deficient. An IBD (including MC) makes the situation worse because the malabsorption problems that are associated with IBDs compromise our ability to absorb magnesium (and vitamin D and often the B vitamins). As a result, most of us are rather severely magnesium deficient, and this causes many of the symptoms associated with MC (or makes them worse), including (but not limited to) depression, anxiety, inability to take a deep breath, muscle weakness, pain, migraines, brittle nails, thin skin, tremors, nausea, hypertension, heart palpitations, etc.
Regarding your mention that MC might exist for years without symptoms. That's certainly not impossible because MC is extremely similar to celiac disease (they are both symptoms of gluten sensitivity), and it's known that gluten sensitivity can present as neurological symptoms for years before digestive symptoms begin. In some cases digestive symptoms never develop. There are many asymptomatic celiacs who don't even realize that they have the disease until it is discovered accidentally when testing is done for some other issue. Also, when GI docs can't figure out what's wrong with a patient (or when they fail to take biopsy samples during a colonoscopy exam), the default diagnosis is IBS and that mistake can linger for many years in some cases before a correct diagnosis is made.
I hope that some of this is helpful.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. MC has a lot of predisposing conditions that can make it an accident waiting to happen (that is, waiting for a final trigger). In your case, the C. diff was the final straw. For some of us MC seems to suddenly appear out of nowhere, while for others, it appears to develop slowly. It's a complex disease and it seems to affect everyone differently
Your doctor at least knows enough to prescribe budesonide to treat diarrhea-predominant MC. Apparently she doesn't understand that budesonide can be constipating when the dose is excessive. Constipation is a clear sign that it's time to lower your budesonide dose. It won't "level out". If you don't lower the dose the constipation can only get worse.
Yes, the budesonide will mask your symptoms, but you need to be avoiding the foods that are likely triggers so that your intestines can do enough healing that you won't relapse when the budesonide treatment is completed. Then after you have been in stable remission for a while you can begin to test some foods back into your diet (one at a time of course) to see if you can tolerate them. But gluten will always be a permanent problem for maybe 99 % of us.
Another possibility with the fibromyalgia is the fact that magnesium deficiency is often misdiagnosed as fibromyalgia. These days, most people in the general population are magnesium deficient. An IBD (including MC) makes the situation worse because the malabsorption problems that are associated with IBDs compromise our ability to absorb magnesium (and vitamin D and often the B vitamins). As a result, most of us are rather severely magnesium deficient, and this causes many of the symptoms associated with MC (or makes them worse), including (but not limited to) depression, anxiety, inability to take a deep breath, muscle weakness, pain, migraines, brittle nails, thin skin, tremors, nausea, hypertension, heart palpitations, etc.
Regarding your mention that MC might exist for years without symptoms. That's certainly not impossible because MC is extremely similar to celiac disease (they are both symptoms of gluten sensitivity), and it's known that gluten sensitivity can present as neurological symptoms for years before digestive symptoms begin. In some cases digestive symptoms never develop. There are many asymptomatic celiacs who don't even realize that they have the disease until it is discovered accidentally when testing is done for some other issue. Also, when GI docs can't figure out what's wrong with a patient (or when they fail to take biopsy samples during a colonoscopy exam), the default diagnosis is IBS and that mistake can linger for many years in some cases before a correct diagnosis is made.
I hope that some of this is helpful.
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.
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JennaBee826
- Posts: 2
- Joined: Sat Jul 02, 2016 9:36 am
Jenna,
You're very welcome. Please be aware that the magnesium test that almost all doctors order is the serum test, which is virtually worthless because it will only detect a magnesium deficiency if your body is almost totally out of magnesium. Less than 1 % of the magnesium in your body is in your blood serum. A little over 60 % is stored in bones and the rest is stored in cells. But magnesium is a vital electrolyte, so if the amount of magnesium in the diet is insufficient, the body will always keep the amount in circulation in serum within the "normal" range by pulling magnesium out of the reserves stored in cells as needed. It has to do that because most of the vital functions (heart rate, blood pressure, temperature control, breathing, insulin production, and many, many other processes) require that the blood level of magnesium be maintained within that narrow range or things begin to go haywire. So unless you are critically low on magnesium, that test result will always be normal.
If you want to get an idea of your actual magnesium level, ask for the red cell magnesium test.
Tex
You're very welcome. Please be aware that the magnesium test that almost all doctors order is the serum test, which is virtually worthless because it will only detect a magnesium deficiency if your body is almost totally out of magnesium. Less than 1 % of the magnesium in your body is in your blood serum. A little over 60 % is stored in bones and the rest is stored in cells. But magnesium is a vital electrolyte, so if the amount of magnesium in the diet is insufficient, the body will always keep the amount in circulation in serum within the "normal" range by pulling magnesium out of the reserves stored in cells as needed. It has to do that because most of the vital functions (heart rate, blood pressure, temperature control, breathing, insulin production, and many, many other processes) require that the blood level of magnesium be maintained within that narrow range or things begin to go haywire. So unless you are critically low on magnesium, that test result will always be normal.
If you want to get an idea of your actual magnesium level, ask for the red cell magnesium test.
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 Jenna,
Welcome to the board! I was an Entocort user. I'm not sure what your dose is now? If you are constipated step down to a lower dose. i.e. If you are taking 3 pills step down to 2, if you are taking 2 pills step down to 1, if you are taking 1 pill and constipated step down to 1 pill every other day. This should alleviate the constipation. If constipation continues at lower dose then go lower (I'd try for a week at first step down before going lower.)
Also we find on the board that a slow taper is helpful to prevent relapse when getting off of Entocort. When you are down to 1 pill for awhile then go to 1 pill every other day for awhile, then perhaps 1 pill every third day for awhile, then no pills.
Let us know if you have any questions.
Jenna said
Welcome to the board! I was an Entocort user. I'm not sure what your dose is now? If you are constipated step down to a lower dose. i.e. If you are taking 3 pills step down to 2, if you are taking 2 pills step down to 1, if you are taking 1 pill and constipated step down to 1 pill every other day. This should alleviate the constipation. If constipation continues at lower dose then go lower (I'd try for a week at first step down before going lower.)
Also we find on the board that a slow taper is helpful to prevent relapse when getting off of Entocort. When you are down to 1 pill for awhile then go to 1 pill every other day for awhile, then perhaps 1 pill every third day for awhile, then no pills.
Let us know if you have any questions.
Jenna said
The foundation is new this year and a great resource. We have great volunteer board members.She did admit that there's not much known about LC so I told her to check out the foundation :)