Jane,
I'm not sure exactly how that old saying goes, but my version of it is, "Sometimes we have to laugh to keep from crying", and it's certainly appropriate for anyone trying to recover from this disease.
You did a great job of putting into words many of the thoughts that go through our heads as we learn to deal with this disease, and you managed to do it with the flare of a good comedy writer.
You're very perceptive, to already be aware that there are indeed a few silver linings to this MC cloud, if we just look for them. I feel sorry for the people who have to go through the ordeal of adjusting to this disease without ever recognizing any silver linings. If all we can see is a disgusting disease, with nothing but negative attributes, it becomes an extremely depressing influence on our lives. Been there, done that, and it took me several years before I saw the light.
But when it eventually dawned on me that I was becoming much more aware of many virtues that are vital to a true appreciation for life, valuable lessons that had evaded me before, I began to see the disease in a different light. And you're so right — it teaches us a level of compassion that we might never be able to recognize, were it not for the way that the disease changes our priorities, and our overall appreciation of life.
You seem to have a gift for articulating your thoughts into words. Are you a writer? If not, maybe you should give writing some thought.
Thanks for a very thoughtful and entertaining post.
Tex
The concerns and trials of one girl with microscopic colitis
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Jane,
I hated buying the diapers too. After 6 months of WD, especially at night, I had to resort to not only diapers, but those ugly blue pads as well in case the diaper leaked. I could not figure out why I wouldn't wake up. My GI said that was a sure sign of IBD. I still cannot understand why it takes so long to get a proper diagnosis and why drs insist diet doesn't matter.
I was on several prescriptions previously, now with my diet under control I am on NONE. I take VSL #3 probiotic. All thanks to all the good advice here, certainly not from my drs.
It's great to have a DH that is understanding and can laugh about it all.
I hated buying the diapers too. After 6 months of WD, especially at night, I had to resort to not only diapers, but those ugly blue pads as well in case the diaper leaked. I could not figure out why I wouldn't wake up. My GI said that was a sure sign of IBD. I still cannot understand why it takes so long to get a proper diagnosis and why drs insist diet doesn't matter.
I was on several prescriptions previously, now with my diet under control I am on NONE. I take VSL #3 probiotic. All thanks to all the good advice here, certainly not from my drs.
It's great to have a DH that is understanding and can laugh about it all.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Jane:
I have read here, that others who have been pregnant, have gone into remission or symptoms greatly improved during the pregnancy. That doesn't solve your concerns for after, I know, but wanted to pass that on.
I know it is very tough at any age having this, but being so young, more so. Your attitude and sense of humor are terrific, though, and must help you a lot!
Have you ever been on Entorocort, or any other medication for MC? If so, did you improve?
Lisa
I have read here, that others who have been pregnant, have gone into remission or symptoms greatly improved during the pregnancy. That doesn't solve your concerns for after, I know, but wanted to pass that on.
I know it is very tough at any age having this, but being so young, more so. Your attitude and sense of humor are terrific, though, and must help you a lot!
Have you ever been on Entorocort, or any other medication for MC? If so, did you improve?
Lisa
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seeljanerun
- Adélie Penguin
- Posts: 73
- Joined: Wed Aug 14, 2013 11:33 am
Tex,
Thank you for your compliments; I was an English major in college but don't write now much other than recreationally.
Theresa,
I'm so sorry :( That's really hard. I'm so happy you are in a much better place now! Yes, it is crazy how ignorant gastroenterologist are regarding the effects of diet. In regards to the VSL, how many do you take? Do you feel like it has helped? I started taking it maybe a month and a half ago and am not sure whether or not it is helping. I am increasing it to 6 packets a day to see if it makes a difference.
Lisa,
Yes, I have read that too; I think in Tex's book. I certainly hope that is the case for me! and thank you. I have been on asacol, which did nothing and/or may have increased my symptoms. I tried high dose pepto bismol, which only had the effect of constipating my diarrhea and making it worse. and I have been on entocort twice. The first time, it worked for about two weeks, and I was so happy - I had normal bowel movements for the first time in years. But, out of no where, it stopped working. The dr had me taper off because he didn't want me to be on it for too long. About a year later, we tried it again, and it had no effect. I have had a pill cam test, which didn't find anything, and I had a hydrogen breath test with lactulose, although I haven't gotten the results yet. I have also been seeing an alternative medicine practitioner, who found that I have adrenal fatigue and an overgrowth of some pathogenic bacteria. So, I did a course of antiobiotics, and high dose probiotics (VSL). That's where I'm at right now. Although I am just starting a low histamine elimination diet, as I was reading about mast cell issues and the relationship with microscopic colitis. I have some symptoms that are in line with a histamine issue - uticaria after showering/exercising, my throat swelling up and coughing a whole bunch after eating yogurt and avocado, feeling nauseous and pretty sick after eating chuck roast that had been cooked in a crock pot, etc. So, I feel like it is worth a shot. I also tend to eat a lot of left-over meat, bone broth which I thought was healing for me, and aged products like vinegar and coconut aminos etc. Additionally, I did have the enterolab testing done and it said I was sensitive to everything they tested, and in the past I have just excluded the big things - the +3 and +2 foods and dairy, soy, gluten and egg, without results. I am thinking I probably need to exclude the +1 things also at this point. I think it has just taking me a long time to get to the point where I can really commit to such a limited diet - I love eating out, which is already pretty difficult, and this next stage would make it impossible (no chicken, rice, beef, corn etc.).
Phew. I talk myself in circles, haha.
Thank you for your compliments; I was an English major in college but don't write now much other than recreationally.
Theresa,
I'm so sorry :( That's really hard. I'm so happy you are in a much better place now! Yes, it is crazy how ignorant gastroenterologist are regarding the effects of diet. In regards to the VSL, how many do you take? Do you feel like it has helped? I started taking it maybe a month and a half ago and am not sure whether or not it is helping. I am increasing it to 6 packets a day to see if it makes a difference.
Lisa,
Yes, I have read that too; I think in Tex's book. I certainly hope that is the case for me! and thank you. I have been on asacol, which did nothing and/or may have increased my symptoms. I tried high dose pepto bismol, which only had the effect of constipating my diarrhea and making it worse. and I have been on entocort twice. The first time, it worked for about two weeks, and I was so happy - I had normal bowel movements for the first time in years. But, out of no where, it stopped working. The dr had me taper off because he didn't want me to be on it for too long. About a year later, we tried it again, and it had no effect. I have had a pill cam test, which didn't find anything, and I had a hydrogen breath test with lactulose, although I haven't gotten the results yet. I have also been seeing an alternative medicine practitioner, who found that I have adrenal fatigue and an overgrowth of some pathogenic bacteria. So, I did a course of antiobiotics, and high dose probiotics (VSL). That's where I'm at right now. Although I am just starting a low histamine elimination diet, as I was reading about mast cell issues and the relationship with microscopic colitis. I have some symptoms that are in line with a histamine issue - uticaria after showering/exercising, my throat swelling up and coughing a whole bunch after eating yogurt and avocado, feeling nauseous and pretty sick after eating chuck roast that had been cooked in a crock pot, etc. So, I feel like it is worth a shot. I also tend to eat a lot of left-over meat, bone broth which I thought was healing for me, and aged products like vinegar and coconut aminos etc. Additionally, I did have the enterolab testing done and it said I was sensitive to everything they tested, and in the past I have just excluded the big things - the +3 and +2 foods and dairy, soy, gluten and egg, without results. I am thinking I probably need to exclude the +1 things also at this point. I think it has just taking me a long time to get to the point where I can really commit to such a limited diet - I love eating out, which is already pretty difficult, and this next stage would make it impossible (no chicken, rice, beef, corn etc.).
Phew. I talk myself in circles, haha.
Jane
Jane,
I took 2 VSL #3 breakfast and dinner for about 3 months. Then I started taking just one at breakfast and drinking water kefir. I add a capsule to the kefir about once per week to insure it still has a good mix of bacteria.
It takes a while for this to work. Some PP have reacted badly to probiotics, taking more might make that worse. We are each different and you will have to use trial and error.
As for the diet. Most of us that have been successful have chosen a few safe foods and eaten nothing else for several weeks. Then add things back one at a time.
Mine was:
breakfast...banana, corn chex, almond milk
lunch...avocado, chicken, rice cake, water kefir
snack...rice cake with peanut butter
dinner...chicken, potatoes, overcooked veggies (carrots, squash, etc)
snack...banana
Remember what we can eat in a flare is wayyyyy different than what we can eat in remission, but we will always have to avoid the triggers. I have mostly added back fruits and vegetables.
I took 2 VSL #3 breakfast and dinner for about 3 months. Then I started taking just one at breakfast and drinking water kefir. I add a capsule to the kefir about once per week to insure it still has a good mix of bacteria.
It takes a while for this to work. Some PP have reacted badly to probiotics, taking more might make that worse. We are each different and you will have to use trial and error.
As for the diet. Most of us that have been successful have chosen a few safe foods and eaten nothing else for several weeks. Then add things back one at a time.
Mine was:
breakfast...banana, corn chex, almond milk
lunch...avocado, chicken, rice cake, water kefir
snack...rice cake with peanut butter
dinner...chicken, potatoes, overcooked veggies (carrots, squash, etc)
snack...banana
Remember what we can eat in a flare is wayyyyy different than what we can eat in remission, but we will always have to avoid the triggers. I have mostly added back fruits and vegetables.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Right on, Sister! Thanks for taking the time to write that. As someone who was never picky and didn't send meals back when I should have, I now have to say "And please tell them not to put anything on it"..I hate being the center of attention at the table when I go out to eat with friends. And yes, while they're eating awesome things I'm eating plain meat & a plain sweet potato. I love this brother/sisterhood! 
Marcia
Marcia
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seeljanerun
- Adélie Penguin
- Posts: 73
- Joined: Wed Aug 14, 2013 11:33 am
Theresa,
It's good to know I have to be patient with the VSL - I know everyone is different, but it does seem like my body tolerates it okay. I will stick with it for 3-4 months at least and see.
And thanks for sharing your diet when flaring. Eating the same things for each meal has never occurred to me for some reason, but it makes way more sense than what I have been doing: eliminating the big triggers, but eating a variety (I say that lightly haha) of foods and then never achieving remission because I couldn't figure out the little triggers that were keeping me stuck.
The hard part for me will be determining safe foods. I think turkey is okay, and squash. But, nearly all carbohydrates I seem to have a problem with: oats, rice, sweet potato, quinoa, beans and corn. I don't think I have ever given white potatos a fair shake, so those might be possible. Did you eat any green vegetables? what quantity of vegetables seemed to be okay? Again, I know everyone is different, but just to have a starting place...I think I tend to overdo it on cooked vegetables because I love them so much :(
Marcia,
I'm glad you could relate! Yeah it's nice to know that there are others out there who can understand <3 I hate being that person too - In a lot of ways I am easy going so having to be so regimental and obsessive about food when eating out drives me crazy (as well as those who work in the places I dine I'm sure, haha). I guess that's why so many of us have given up on eating out. I love food though and the whole experience of eating so it breaks my heart :(
It's good to know I have to be patient with the VSL - I know everyone is different, but it does seem like my body tolerates it okay. I will stick with it for 3-4 months at least and see.
And thanks for sharing your diet when flaring. Eating the same things for each meal has never occurred to me for some reason, but it makes way more sense than what I have been doing: eliminating the big triggers, but eating a variety (I say that lightly haha) of foods and then never achieving remission because I couldn't figure out the little triggers that were keeping me stuck.
The hard part for me will be determining safe foods. I think turkey is okay, and squash. But, nearly all carbohydrates I seem to have a problem with: oats, rice, sweet potato, quinoa, beans and corn. I don't think I have ever given white potatos a fair shake, so those might be possible. Did you eat any green vegetables? what quantity of vegetables seemed to be okay? Again, I know everyone is different, but just to have a starting place...I think I tend to overdo it on cooked vegetables because I love them so much :(
Marcia,
I'm glad you could relate! Yeah it's nice to know that there are others out there who can understand <3 I hate being that person too - In a lot of ways I am easy going so having to be so regimental and obsessive about food when eating out drives me crazy (as well as those who work in the places I dine I'm sure, haha). I guess that's why so many of us have given up on eating out. I love food though and the whole experience of eating so it breaks my heart :(
Jane
Oh Jane, I know that very well. I work in long term care and I had to travel recently to other nursing facilities to tour their facilities. They all served us lunch. While the others were eating whatever the facility served I was quietly eating a pouch of tuna that I had in my purse. I'm sure they all thought I had an eating disorder or something. Shortly after that time I received my EnteroLab results and tuna is on my hit list so I can no longer eat tuna. The one facility was progressive -- they had gluten free bread.
Marcia
Marcia
Jane,
If you can figure out a safe menu and then eat it every day for a while it makes it a lot easier to know if a particular food is a problem. Beans & corn (as far as a side dish) are hard to handle because they are high residue. Corn chex, corn flakes, or grits may be tolerable at this point. I still don't eat corn as a side dish. If there are a few kernels in soup or something its ok. Beans have a lot of soluble fiber which will support the probiotics if you can handle them. I eat about 1/2 cup as a side dish most days. You are right to consider the quantity, beans as a small side dish is a lot different than 'beans & cornbread' as a whole meal.
I don't eat any raw green vegetables yet. I eat green beans & canned spinach sometimes.
Just finished a heavenly meal....roast with potatoes, carrots, onions....gluten free bread from the breadmaker....cucumber, tomato & onion salad (bought ingredients from the produce stand on the town square this morning)....glass of red wine. Talk about comfort foods! Also small town southern life is the greatest IMHO.
Cheers from the pineywoods of East Texas.
If you can figure out a safe menu and then eat it every day for a while it makes it a lot easier to know if a particular food is a problem. Beans & corn (as far as a side dish) are hard to handle because they are high residue. Corn chex, corn flakes, or grits may be tolerable at this point. I still don't eat corn as a side dish. If there are a few kernels in soup or something its ok. Beans have a lot of soluble fiber which will support the probiotics if you can handle them. I eat about 1/2 cup as a side dish most days. You are right to consider the quantity, beans as a small side dish is a lot different than 'beans & cornbread' as a whole meal.
I don't eat any raw green vegetables yet. I eat green beans & canned spinach sometimes.
Just finished a heavenly meal....roast with potatoes, carrots, onions....gluten free bread from the breadmaker....cucumber, tomato & onion salad (bought ingredients from the produce stand on the town square this morning)....glass of red wine. Talk about comfort foods! Also small town southern life is the greatest IMHO.
Cheers from the pineywoods of East Texas.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
-
audreyjhess
- Posts: 9
- Joined: Thu Oct 30, 2014 5:38 pm
- Location: Grand Rapids, MI
Thank you!
Best. Post. Yet.
Audi
Diagnosed MC (Lymphocytic) 10/16/2014
Fibromyalgia 1995
Hypothyroid (Hashimoto's) 1985
Meds Currently None for MC
Diagnosed MC (Lymphocytic) 10/16/2014
Fibromyalgia 1995
Hypothyroid (Hashimoto's) 1985
Meds Currently None for MC
Donna,
I have an Oster bread machine which is the same as used in the video here:
http://www.pamelasproducts.com/products ... bread-mix/
I use Pamela's bread mix and get it at Amazon.
I have an Oster bread machine which is the same as used in the video here:
http://www.pamelasproducts.com/products ... bread-mix/
I use Pamela's bread mix and get it at Amazon.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
-
fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
-
Mrs. Poopy Jeans
- Adélie Penguin
- Posts: 72
- Joined: Thu Feb 25, 2016 2:33 pm
I so needed this article although it is now July 2016 and long after it was originally posted. Everything everything everything still applies to me, to all of us. And it is always so comforting to know I am not the first or the last and never alone in this battle. I am just so thankful I do not have to go to work or take care of kids or a husband or think about sex. I am lucky to get thru an average day without 8 to 12 trips to the bathroom - that is a great day. I am 12 months since being diagnosed and I am on Entocort and my diet is so restricted that I eat only about 5 foods total. But my body is still in bad shape, has a long way to go to heal from how very bad it was.
Laughter is the best medicine. I can always laugh at myself and all of you help me to continue to do that as we are all in this together. Thank you so very much for posting.
Laughter is the best medicine. I can always laugh at myself and all of you help me to continue to do that as we are all in this together. Thank you so very much for posting.