Suggestions please...new to all of this
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Suggestions please...new to all of this
I'm not sure where to start but am feeling very overwhelmed and I am not getting any help from my doctor. I'm going to try and sum things up as short and best as possible....I have endometriosis and it started to get bad after I had my daughter- to solve this they put me on an IUD which didn't help so birth control was added, meaning I'm on 2 forms of hormones. Almost immediately after starting birth control I started having terrible diarrhea...up to 10 times day. A different form of birth control was given and no change, I stopped it for a few weeks and that didn't help. Had a colonoscopy and the doctor told me to stop taking ibuprofen, which I had been doing daily. She also said to take fiber pills and put me on budesonide for 3 months stating that should take care of the problem. For the most part I was OK during those 3 months. No more diarrhea but when I got down to 1 pill/day I would have multiple bowel movements a day. When the pills ran out I was good for 24 hours then back to the diarrhea. I called the dr office explaining above. They then put me on Lialda and I was told I would be on it for the rest of my life. I explained that I was very frustrated because I didn't know what I was diagnosed with and wanted to talk to the dr. After 3 attempts to get an appointment I finally have one but not until December 2. I was also told that I have Lymphocytic colitis. I also take synthroid for thyroid. If anyone please has suggestions on things I can do to feel better I would appreciate it. Since I can't talk to my dr I am trying to figure this out on my own for the next 2 months. I already know not to have dairy, fried foods or high fat foods. I have been avoiding those for years not realizing at the time what the problem likely was. I have been told I have IBS in the past and really didn't do anything for it but stop eating those foods.
Welcome Carri,
I'm sorry you've been so sick. I have LC also. Everyone on this board is so helpful. I was DX in June of this year so I'm fairly new here . I'm sorry to say but I don't think you will know much more after meeting with your dr.
They just don't know much about what we have. You will learn so much from reading the posts here.
Each one of us is different in how meds work either for or against us. I'm not on any meds, I tried enterocort but couldn't take it (I'm so glad I couldn't, knowing what I know now). A lot of us had the Enterolab testing to show what our bodies were reacting to. I think I read that 95% of us cannot have gluten. I cannot have gluten, dairy or eggs.
I learned here to just have 4-5 safe foods for a while until we could heal some and then add others in as you feel you can handle them. We have bone broth with potatoes or rice added in, maybe a sweet potato.
I'm sure more experienced ones will chime in here and help also. There is a book in the upper right hand corner that Tex wrote that will really help you to understand this disease.
Love, Connie
I'm sorry you've been so sick. I have LC also. Everyone on this board is so helpful. I was DX in June of this year so I'm fairly new here . I'm sorry to say but I don't think you will know much more after meeting with your dr.
They just don't know much about what we have. You will learn so much from reading the posts here. Each one of us is different in how meds work either for or against us. I'm not on any meds, I tried enterocort but couldn't take it (I'm so glad I couldn't, knowing what I know now). A lot of us had the Enterolab testing to show what our bodies were reacting to. I think I read that 95% of us cannot have gluten. I cannot have gluten, dairy or eggs.
I learned here to just have 4-5 safe foods for a while until we could heal some and then add others in as you feel you can handle them. We have bone broth with potatoes or rice added in, maybe a sweet potato.
I'm sure more experienced ones will chime in here and help also. There is a book in the upper right hand corner that Tex wrote that will really help you to understand this disease.
Love, Connie
Live, Laugh & Love Much
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UkuleleLady
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Hi Carri,
I'm sorry you've ended up here, and I'm really sorry you received such poor medical care regarding your MC. The GIs know very little about how to treat this.
In the beginning, low fiber and gluten and dairy free are musts. Fiber (insoluble) irritates the colon. My colon was "denuded" as per my biopsy report. Fiber was out for me in the beginning. Nothing raw and I only ate a small amount of sunflower butter instead of nuts.
Gluten is indigestible and is the known cause of celiac, it is also associated with MC. As is NSAID use. So it's good you're off ibuprofen. My advice is to eliminate gluten completely.
Most of us also react to soy, and many of us react to eggs. It would not hurt to cut all gluten, dairy and soy and focus on meats, very well-cooked veggies and a carb that you can handle for calories. Some of us can do potatoes, others rice, some corn, some sweet potatoes. Bananas and plantains are other options.
Read the stickys at the top of the Main board, they will help you get oriented.
We here pretty much agree that IBS is BS and it's possible you've had MC longer than the doctors think. Some of us have thyroid issues, perhaps one of those folks will chime in.
I hope you will find some relief soon. It took me a while but my life is almost normal now, a year and a half later.
Best wishes.
Nancy
I'm sorry you've ended up here, and I'm really sorry you received such poor medical care regarding your MC. The GIs know very little about how to treat this.
In the beginning, low fiber and gluten and dairy free are musts. Fiber (insoluble) irritates the colon. My colon was "denuded" as per my biopsy report. Fiber was out for me in the beginning. Nothing raw and I only ate a small amount of sunflower butter instead of nuts.
Gluten is indigestible and is the known cause of celiac, it is also associated with MC. As is NSAID use. So it's good you're off ibuprofen. My advice is to eliminate gluten completely.
Most of us also react to soy, and many of us react to eggs. It would not hurt to cut all gluten, dairy and soy and focus on meats, very well-cooked veggies and a carb that you can handle for calories. Some of us can do potatoes, others rice, some corn, some sweet potatoes. Bananas and plantains are other options.
Read the stickys at the top of the Main board, they will help you get oriented.
We here pretty much agree that IBS is BS and it's possible you've had MC longer than the doctors think. Some of us have thyroid issues, perhaps one of those folks will chime in.
I hope you will find some relief soon. It took me a while but my life is almost normal now, a year and a half later.
Best wishes.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Hi Carri,
Welcome to our Internet family. Unfortunately many GI specialists fail to provide much information about the disease to their patients diagnosed with MC. This may be a good thing, because as Connie pointed out, many of them really do not know how to effectively treat the disease anyway, because they do not understand it. This is largely due to their inability to recognize the importance of food sensitivities connected with proper treatment of the disease. Unfortunately most GI specialists still mistakenly believe that food sensitivities have nothing to do with IBDs, including LC, CC, or any other form of MC.
However, research shows that in most cases, when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and this opens the door to certain other food sensitivities also. The sensitivity to the other foods appears to be due to molecular mimicry associated with a similarity between certain amino acid chains (peptides) in their respective molecular compositions. The type of gluten sensitivity that we have cannot be detected by the conventional celiac screening blood tests, because number 1, antibodies are created in the intestines (not in the bloodstream), and number 2, the blood tests are not sensitive enough to detect them. In fact, those blood tests are so insensitive that they can only detect fully-developed celiac disease, a condition which usually takes many years to develop to the severity level where the blood tests will detect the disease. Because of the poor sensitivity of the tests, the average time from the onset of symptoms until an official medical diagnosis of celiac disease is handed down, is currently 9.7 years. So it's no wonder that the tests can't detect the type of gluten sensitivity that we have with MC.
Your symptom relapse following the discontinuation of budesonide is typical of what happens when the food sensitivities are not removed from the diet, because as long as those foods continue to be eaten, the inflammation continues to be regenerated with every meal.
The problem with Lialda is that it is based on the active ingredient mesalamine, and most IBD patients who are sensitive to NSAIDS (such as ibuprofen) tend to produce pro-inflammatory leukotrienes when exposed to mesalamine, resulting in inflammation and diarrhea. This is because mesalamine and NSAIDs are closely related, both being derivatives of salicylic acid. Here's a reference on that, from The New England Journal of Medicine, if you need more evidence:
And here's another reference from that article:
Therefore, if you actually react to ibuprofen (and there is a very good chance that you do), then the Lialda will have same effect, so it is contraindicated. And as Nancy mentioned, fiber is also contraindicated for MC. Fiber is very irritating, and our hypersensitive guts do not need any additional irritation. Too much fiber in the diet (especially insoluble fiber) can actually prevent/postpone the ability to achieve remission.
And yes, hormones (and HRT) have a definite effect on MC, but the relationship is quite complex.
The bottom line is that diet changes are the key to lasting remission. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Unfortunately many GI specialists fail to provide much information about the disease to their patients diagnosed with MC. This may be a good thing, because as Connie pointed out, many of them really do not know how to effectively treat the disease anyway, because they do not understand it. This is largely due to their inability to recognize the importance of food sensitivities connected with proper treatment of the disease. Unfortunately most GI specialists still mistakenly believe that food sensitivities have nothing to do with IBDs, including LC, CC, or any other form of MC.
However, research shows that in most cases, when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and this opens the door to certain other food sensitivities also. The sensitivity to the other foods appears to be due to molecular mimicry associated with a similarity between certain amino acid chains (peptides) in their respective molecular compositions. The type of gluten sensitivity that we have cannot be detected by the conventional celiac screening blood tests, because number 1, antibodies are created in the intestines (not in the bloodstream), and number 2, the blood tests are not sensitive enough to detect them. In fact, those blood tests are so insensitive that they can only detect fully-developed celiac disease, a condition which usually takes many years to develop to the severity level where the blood tests will detect the disease. Because of the poor sensitivity of the tests, the average time from the onset of symptoms until an official medical diagnosis of celiac disease is handed down, is currently 9.7 years. So it's no wonder that the tests can't detect the type of gluten sensitivity that we have with MC.
Your symptom relapse following the discontinuation of budesonide is typical of what happens when the food sensitivities are not removed from the diet, because as long as those foods continue to be eaten, the inflammation continues to be regenerated with every meal.
The problem with Lialda is that it is based on the active ingredient mesalamine, and most IBD patients who are sensitive to NSAIDS (such as ibuprofen) tend to produce pro-inflammatory leukotrienes when exposed to mesalamine, resulting in inflammation and diarrhea. This is because mesalamine and NSAIDs are closely related, both being derivatives of salicylic acid. Here's a reference on that, from The New England Journal of Medicine, if you need more evidence:
Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous EnterocolitisAlthough mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.
And here's another reference from that article:
Exacerbation of chronic ulcerative colitis with mesalamine.Abstract
Activation of ulcerative colitis with mesalamine has rarely been reported. In case 1, a 34-year-old man was treated with oral mesalamine, resulting in an exacerbation of colitis that rapidly improved with glucocorticoids and mesalamine withdrawal. Oral cromolyn sodium and occasional low-dose prednisone therapy has maintained long-term remission. In case 2, a 28-year-old man receiving prednisone treatment developed chest pain and myalgias 1 week after initiation of mesalamine that resolved on mesalamine withdrawal. A lower dose of mesalamine with continued glucocorticoids resulted in clinical improvement, and both drugs were tapered. Mesalamine sensitivity was documented endoscopically and histologically by evaluating mucosal changes after two mesalamine enemas during a 24-hour period. There was dramatic progression from quiescent disease to active colitis in 24 hours. Mesalamine sensitivity must be included in the differential diagnosis of ulcerative colitis exacerbations. Concurrent steroid therapy can suppress systemic side effects, making the diagnosis even more elusive.
Therefore, if you actually react to ibuprofen (and there is a very good chance that you do), then the Lialda will have same effect, so it is contraindicated. And as Nancy mentioned, fiber is also contraindicated for MC. Fiber is very irritating, and our hypersensitive guts do not need any additional irritation. Too much fiber in the diet (especially insoluble fiber) can actually prevent/postpone the ability to achieve remission.
And yes, hormones (and HRT) have a definite effect on MC, but the relationship is quite complex.
The bottom line is that diet changes are the key to lasting remission. 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.
Hi Carri,
Sorry you've had such poor medical advise.
Carri said:
If you decide to retry Entocort we find most of our members do best with 4-5-6 month stint coupled w/ GF DF and most likely soy free. Three months of Entocort with not going GF equals high incidence of relapse. We get a lot of new members who find us after 3 months on Entocort and no diet changes and a relapse. If the Lialda is not working and you want the support of Entocort I'd call the nurse tell her/him the Lialda is not working and you'd like to get back on Entocort so that you don't suffer over the holidays. It will take going GF, DF (including yogurt and cheese free etc) and probably soy free to get off of Entocort and into remission. It is the casein that is the problem for us in dairy. We recommend very slow taper off of Entocort.....at low end like one pill every other day for a month followed by one pill every third day for awhile before you stop.
Hormones can also effect MC.
Tex's book is really helpful. Info is at top right corner.
Brandy
Sorry you've had such poor medical advise.
Carri said:
Not so. I'm in remission (no drugs). It took going GF, DF and SF plus Entocort for 4.5 months. I'm a 53 year old F. Remission is a realistic goal. Alot of our members stop posting as they are in remission and have moved on with their life.I was told I would be on it for the rest of my life.
If you decide to retry Entocort we find most of our members do best with 4-5-6 month stint coupled w/ GF DF and most likely soy free. Three months of Entocort with not going GF equals high incidence of relapse. We get a lot of new members who find us after 3 months on Entocort and no diet changes and a relapse. If the Lialda is not working and you want the support of Entocort I'd call the nurse tell her/him the Lialda is not working and you'd like to get back on Entocort so that you don't suffer over the holidays. It will take going GF, DF (including yogurt and cheese free etc) and probably soy free to get off of Entocort and into remission. It is the casein that is the problem for us in dairy. We recommend very slow taper off of Entocort.....at low end like one pill every other day for a month followed by one pill every third day for awhile before you stop.
Hormones can also effect MC.
Tex's book is really helpful. Info is at top right corner.
Brandy
Thanks for the information everyone. I did bug the doctors office enough that they got me in. They put me back on the steroid and doubled the other med. Things are going better but I will definately be following this site getting info. My doctor is running some blood test too so we will see what those turn up.
Welcome.
Glad to hear that they got you in quickly and that they are willing to put you back on Entocort. Please heed the advise of everyone here and change your diet WHILE ON THE DRUG. if you don't, you will likely relapse again and it has also been said that with each subsequent try with Budesonide, it helps less easily.
I was on it for 6 months total….slowly weaning the dose down as I got slightly constipated. I was able to get off of it completely because I stuck to a diet of cooked fresh proteins, white rice, sweet potatoes, cooked easy to digest veggies, GF Chex cereal with almond milk and eggs. No gluten, dairy, soy, coffee, fresh fruit, beans, salad, citrus, tomato products and very little sugar. I basically took out any food that could potentially give me problems. I know it seems drastic, but it's the fastest way to healing.
Now for the good news. It doesn't have to be forever. If you do the right things now, you can test many of these foods back into your diet when your gut is better. i am three years out from diagnosis. Although I have never gone back to gluten or dairy, I have been able to slowly over time add back in all the other foods I mentioned. Mast cells are an issue for me, so I take OTC antihistamines to help with staying in remission. Life is pretty good :)
My suggestion is to buy Tex's book. it's pictured on this page upper right corner. Click on it to order. Read as much as you can on this forum and ask as many questions as you can. This disease is complicated and it takes perseverance, detective work, and patience to get well. Sometimes it's two steps forward and one step back, but there is a road to recovery.
Good luck
Leah
Glad to hear that they got you in quickly and that they are willing to put you back on Entocort. Please heed the advise of everyone here and change your diet WHILE ON THE DRUG. if you don't, you will likely relapse again and it has also been said that with each subsequent try with Budesonide, it helps less easily.
I was on it for 6 months total….slowly weaning the dose down as I got slightly constipated. I was able to get off of it completely because I stuck to a diet of cooked fresh proteins, white rice, sweet potatoes, cooked easy to digest veggies, GF Chex cereal with almond milk and eggs. No gluten, dairy, soy, coffee, fresh fruit, beans, salad, citrus, tomato products and very little sugar. I basically took out any food that could potentially give me problems. I know it seems drastic, but it's the fastest way to healing.
Now for the good news. It doesn't have to be forever. If you do the right things now, you can test many of these foods back into your diet when your gut is better. i am three years out from diagnosis. Although I have never gone back to gluten or dairy, I have been able to slowly over time add back in all the other foods I mentioned. Mast cells are an issue for me, so I take OTC antihistamines to help with staying in remission. Life is pretty good :)
My suggestion is to buy Tex's book. it's pictured on this page upper right corner. Click on it to order. Read as much as you can on this forum and ask as many questions as you can. This disease is complicated and it takes perseverance, detective work, and patience to get well. Sometimes it's two steps forward and one step back, but there is a road to recovery.
Good luck
Leah