Hello everyone,
I have looked up information on this board for a long time, but this is my first time posting. I have a long history with MC, but will try to just give you the essentials and ask for your help.
I was diagnosed with collagenous colitis in 2006 at the age of 17. The GI tried me on several meds: Bentyl, Entocort, Asacol, and Biaxin. Nothing helped. He said he thought I didn’t have CC because I was so young and if that’s what it was it would have responded to these meds, so I must just have IBS. (I now realize that was completely inaccurate.) However, at the time I was 17 and thought the doctors had the answers so I went on believing I had IBS and just had to live with it.
I went on like this for about two years. I had diarrhea about 8 times a day. I was in college and living in the dorms for these years. I had finally had enough and tried to find answers to IBS searching online. I starting taking Konsyl (a coarsely ground psyllium husk fiber) supplement twice a day and I found huge relief. I went from the watery, 8 times a day diarrhea to having soft, formed stools about 5 times a day with occasional loose stools. I realized that dairy and raw veggies caused a lot of the loose stools, so I cut a lot of those out (although I wasn't strict about it.) I pretty much went on like this for about 10 years (2008-2018). During this time I had two children, including a c-section in Sept. 2017. Pregnancy, delivery, and breastfeeding caused a lot of highs and lows with my symptoms.
During Spring 2018 my symptoms gradually got worse. I started having loose stools more often, and full on diarrhea sometimes. I honestly had pretty much forgotten about the collagenous colitis diagnosis because for ten years I thought that I had IBS. I decided I should probably see a GI since it had been over 10 years since I consulted with them. I went to a new GI. He did a sigmoidoscopy on June 20th and confirmed the collagenous colitis. For a few days after the procedure I had my typical 5 soft stools every day, but then on June 24th I started having watery diarrhea and that is pretty much what I have been dealing with ever since. (For the past 5 months). The new GI prescribed Entocort and I tried taking it, but within a week it made me so dizzy that I could not drive or take care of my kids so I discontinued with that. The diarrhea seemed to just keep getting worse.
The doctor sent me for an abdominal x-ray and actually found that I was moderately to severely constipated and having overflow diarrhea. They had me do a bowel cleanse (a whole bottle of Miralax and Gatorade)--basically a colonoscopy prep without the colonoscopy. To my surprise I actually felt much better afterwards, I saw improvement in my symptoms (small, soft, formed stools) but it only lasted a few days and then I was back to diarrhea. Over the next few months, the doctor had me go through this cycle several times. Another x-ray would show constipation even though I was having diarrhea several times a day. They would have me take some kind of laxative, and then go for another x-ray a couple days later and I would already be constipated again. Just to be clear, I was never actually constipated in the sense that I couldn’t have a bowel movement, I would just have overflow diarrhea. The GI started saying that I just needed to increase my fiber to prevent constipation (but this didn’t work) and then offered Remicade, which I refused. So I have pretty much given up on the conventional medical system being any help.
I have always been a “Type A” personality, but throughout this process during the last several months I have been struggling greatly with anxiety. I believe that my gut and mental health are negatively impacting each other.
I am finally at a point where I am willing to look at diet. I have read a lot of the posts here about Enterolab testing and I am very interested in that. I am concerned that my inflammation has been going on for so long that it is going to show that I am highly reactive to everything. I have a one year old and a three year old so cooking is already so difficult. Should I try eliminating gluten/dairy from my diet before I do testing and see how I do? Any suggestions would be appreciated, I feel like I have run out of options.
Thank you for taking the time to read my story!
NEWBIE: Untreated MC for 12 years
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
NEWBIE: Untreated MC for 12 years
My health may fail, and my spirit my grow weak, but God remains the strength of my heart; he is mine forever. Psalms 73:26
Hi Ashley,
Welcome to the group. Sadly, GI docs have a nasty habit of insisting that if their treatment doesn't work, you can't have the disease. I guess they feel that somehow that transfers the responsibility for the failed treatment away from their shoulders. That's totally unprofessional and ludicrous of course, because it's a totally incorrect assumption, but they continue to do it anyway. They even invented "IBS" many years ago when MC came along, just so they could have something to blame diagnostic or treatment failures on, rather than owning up to their own incompetence.
Your description of your symptoms reminds me of my symptoms (when I was still reacting). I had constipation that was bad enough that even though I had breakthrough watery diarrhea, both my GP and my GI doc diagnosed me with colon cancer initially, based on the lump in my colon. After putting me through all the tests, my GI doc discovered that I didn't have cancer after all
, but he never bothered to take biopsies during a colonoscopy, so he never found the real problem, or any problem for that matter. He concluded that (believe it or not) my symptoms were all in my head, and I needed to see a psychiatrist. I had alternating cycles of constipation and diarrhea that usually lasted about ten days to two weeks for several years, until I finally figured out what was perpetuating my symptoms.
If you're going to do the EnteroLab tests, the sooner you take them the better the results (unless you've been taking budesonide). Despite your current high sensitivity rate, you won't receive any false positive results. So unless you have selective IgA deficiency (1 in 500 have it), your results would be accurate. Selective IgA deficiency can cause possible false negative results. This is assuming that you can provide a stool sample that's more substantial than "dirty water".
Yes, as you've probably discovered by reading here, diet changes that involve avoiding certain foods have to be 100 % (no traces allowed), and we are all sensitive to gluten, but other sensitivities can vary by the individual. No one likes to make such major changes in their diet, but it's the only game in town for treating MC that refuses to respond to medications.
I hope this helps. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Sadly, GI docs have a nasty habit of insisting that if their treatment doesn't work, you can't have the disease. I guess they feel that somehow that transfers the responsibility for the failed treatment away from their shoulders. That's totally unprofessional and ludicrous of course, because it's a totally incorrect assumption, but they continue to do it anyway. They even invented "IBS" many years ago when MC came along, just so they could have something to blame diagnostic or treatment failures on, rather than owning up to their own incompetence.
Your description of your symptoms reminds me of my symptoms (when I was still reacting). I had constipation that was bad enough that even though I had breakthrough watery diarrhea, both my GP and my GI doc diagnosed me with colon cancer initially, based on the lump in my colon. After putting me through all the tests, my GI doc discovered that I didn't have cancer after all
, but he never bothered to take biopsies during a colonoscopy, so he never found the real problem, or any problem for that matter. He concluded that (believe it or not) my symptoms were all in my head, and I needed to see a psychiatrist. I had alternating cycles of constipation and diarrhea that usually lasted about ten days to two weeks for several years, until I finally figured out what was perpetuating my symptoms.If you're going to do the EnteroLab tests, the sooner you take them the better the results (unless you've been taking budesonide). Despite your current high sensitivity rate, you won't receive any false positive results. So unless you have selective IgA deficiency (1 in 500 have it), your results would be accurate. Selective IgA deficiency can cause possible false negative results. This is assuming that you can provide a stool sample that's more substantial than "dirty water".
Yes, as you've probably discovered by reading here, diet changes that involve avoiding certain foods have to be 100 % (no traces allowed), and we are all sensitive to gluten, but other sensitivities can vary by the individual. No one likes to make such major changes in their diet, but it's the only game in town for treating MC that refuses to respond to medications.
I hope this helps. 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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dottydog1959
- Posts: 12
- Joined: Fri Nov 09, 2018 7:50 am
- Location: North East
Hi Ashley
Your story is very similar to mine, also untreated CC for 13 years since diagnosis by biopsy at colonoscopy in 2005. I refused budesonide and tried fiddling with my diet, all the time with WD 8-15x /day. Partial success with paleo diet (down to 4-5x WD/day), also psyllium husk made symptoms easier to control. Otherwise no treatment, constantly tired, struggling with a stressful job as a Type A personality which I eventually gave up in 2008, unable to continue.
Over the years I got gradually worse, repeat biposies in 2018 confirmed CC and I have been on budesonide for 9 months. It has helped but I relapse immediately on tapering and even on 6mg/day I was having loose BMs or WD 5-6x/day. Then I got norovirus over the new year, couldn't eat, and decided after reading this site to go for the elimination diet of 5-6 safe foods only. See my post "Long time MC, newbie" from a couple of weeks ago and the advice I was given.
I've only been following this advice for 2 weeks and I am SO much better! Formed BMs in the morning only, once or twice then nothing all day. And I can run without needing to go - a revelation! I am GF/SF/DF/EF, I eat turkey, sardines or game meat/ rice (white Basmati or risotto)/ overcooked parsnips or carrots/occasionally one type of GF bread with no soy or gums. That's it, breakfast, lunch and dinner. It's very early days but I feel that there's light at the end of the tunnel, distant though it may be until I get off budesonide.
So, FWIW, as a newbie myself with plenty of experience of years of untreated MC but new to this site and having only just acted on the advice from Tex and others, my advice is:
Do the Enterolab tests NOW. I missed my chance- they can test if you have been on budesonide 6 months or less (I asked them) but testing before dietary restriction or drugs has got to be the most accurate.
Go on a STRICT elimination diet as per the advice on this site (+/- enterolab results). Don't fiddle around the edges like I did for years - it doesn't work - do it and do it properly.
Take Vit D and topical magnesium. I had already tried Mg tablets but didn't notice any difference - I probably wasn't absorbing it. In 2 weeks of using topical magnesium, I am calmer, sleep better, no more night sweats (I thought that was menopausal) and don't wake up with a feeling of impending doom about how to get through the day.
I have hope after years of thinking myself a hopeless case. Apart from the diagnosis, the medical profession has been of no use to me. I wish I had known about enterolab testing and dietary restriction sooner and I would have tried that before budesonide and now I've got the problem of weaning off it. But I am beginning to feel positive about being able to control my MC long term - for the first time ever. Good luck.
Your story is very similar to mine, also untreated CC for 13 years since diagnosis by biopsy at colonoscopy in 2005. I refused budesonide and tried fiddling with my diet, all the time with WD 8-15x /day. Partial success with paleo diet (down to 4-5x WD/day), also psyllium husk made symptoms easier to control. Otherwise no treatment, constantly tired, struggling with a stressful job as a Type A personality which I eventually gave up in 2008, unable to continue.
Over the years I got gradually worse, repeat biposies in 2018 confirmed CC and I have been on budesonide for 9 months. It has helped but I relapse immediately on tapering and even on 6mg/day I was having loose BMs or WD 5-6x/day. Then I got norovirus over the new year, couldn't eat, and decided after reading this site to go for the elimination diet of 5-6 safe foods only. See my post "Long time MC, newbie" from a couple of weeks ago and the advice I was given.
I've only been following this advice for 2 weeks and I am SO much better! Formed BMs in the morning only, once or twice then nothing all day. And I can run without needing to go - a revelation! I am GF/SF/DF/EF, I eat turkey, sardines or game meat/ rice (white Basmati or risotto)/ overcooked parsnips or carrots/occasionally one type of GF bread with no soy or gums. That's it, breakfast, lunch and dinner. It's very early days but I feel that there's light at the end of the tunnel, distant though it may be until I get off budesonide.
So, FWIW, as a newbie myself with plenty of experience of years of untreated MC but new to this site and having only just acted on the advice from Tex and others, my advice is:
Do the Enterolab tests NOW. I missed my chance- they can test if you have been on budesonide 6 months or less (I asked them) but testing before dietary restriction or drugs has got to be the most accurate.
Go on a STRICT elimination diet as per the advice on this site (+/- enterolab results). Don't fiddle around the edges like I did for years - it doesn't work - do it and do it properly.
Take Vit D and topical magnesium. I had already tried Mg tablets but didn't notice any difference - I probably wasn't absorbing it. In 2 weeks of using topical magnesium, I am calmer, sleep better, no more night sweats (I thought that was menopausal) and don't wake up with a feeling of impending doom about how to get through the day.
I have hope after years of thinking myself a hopeless case. Apart from the diagnosis, the medical profession has been of no use to me. I wish I had known about enterolab testing and dietary restriction sooner and I would have tried that before budesonide and now I've got the problem of weaning off it. But I am beginning to feel positive about being able to control my MC long term - for the first time ever. Good luck.
Dotty
Hi Ashley,
I hope you are still following this post....you are young, just a little bit older than my daughter who after doing her DNA has learned that she is most likely Intolerant to Lactose so with my diagnoses of LC and with my mom and grandma both having had issues with their GI tracks I have encouraged my daughter to wean off gluten (anything made with wheat flour to start with) and as much dairy as she can possibly do as well just to stay ahead of the intestinal demise that I know may come later in her life as well.
She also has a 1-1/2 yr old and a 6 yr old....so I understand where you are coming from when it comes to feeding everyone. I encourage her to think outside the box and think Real Foods not things in boxes and use Almond or Coconut milks instead of cow milk when making meals. As far as butters go Ghee is an option and it is found in the baking aisle near crisco usually or use Earthbalance in the cold dairy area of the store it cooks just fine in many things. Another option is MELT it comes in skinny cubes and I have found it at Albertsons so you ought to be able to find it near you as well.
Cook the foods you can eat and add a couple extra things in as well that your kids like...a really great noodle is Tikiyada gluten free and my husband prefers it over semolina any day now. Your kids will not know the difference with that noodle ;-) Little by little you will have more at the table that everyone will like and be safe for you too....this will take some time, but I know you can do it.
Stress does us in big time, so don't stress over this change in diet thing....take it step by step there are many things going on here and we just can't make them happen all at once dang it.
Start slow, perhaps with the VitD and Magnesium Glycinate (or lotions - I use ReMag and love it, I know it appears a bit spendy but it is at the top of my list of go-tos for topical magnesium). I've tried Life-flo, and Maggies Mo-Magnesium and both work fine too, I just find I sometimes like the shea butter after effect and sometimes I don't. The ReMag soaks right in, no after effect.
I hope you are doing better today as I noticed it has been over a week since you last posted here.
Cheers
Erica
I hope you are still following this post....you are young, just a little bit older than my daughter who after doing her DNA has learned that she is most likely Intolerant to Lactose so with my diagnoses of LC and with my mom and grandma both having had issues with their GI tracks I have encouraged my daughter to wean off gluten (anything made with wheat flour to start with) and as much dairy as she can possibly do as well just to stay ahead of the intestinal demise that I know may come later in her life as well.
She also has a 1-1/2 yr old and a 6 yr old....so I understand where you are coming from when it comes to feeding everyone. I encourage her to think outside the box and think Real Foods not things in boxes and use Almond or Coconut milks instead of cow milk when making meals. As far as butters go Ghee is an option and it is found in the baking aisle near crisco usually or use Earthbalance in the cold dairy area of the store it cooks just fine in many things. Another option is MELT it comes in skinny cubes and I have found it at Albertsons so you ought to be able to find it near you as well.
Cook the foods you can eat and add a couple extra things in as well that your kids like...a really great noodle is Tikiyada gluten free and my husband prefers it over semolina any day now. Your kids will not know the difference with that noodle ;-) Little by little you will have more at the table that everyone will like and be safe for you too....this will take some time, but I know you can do it.
Stress does us in big time, so don't stress over this change in diet thing....take it step by step there are many things going on here and we just can't make them happen all at once dang it.
Start slow, perhaps with the VitD and Magnesium Glycinate (or lotions - I use ReMag and love it, I know it appears a bit spendy but it is at the top of my list of go-tos for topical magnesium). I've tried Life-flo, and Maggies Mo-Magnesium and both work fine too, I just find I sometimes like the shea butter after effect and sometimes I don't. The ReMag soaks right in, no after effect.
I hope you are doing better today as I noticed it has been over a week since you last posted here.
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
dottydog1959 wrote:Hi Ashley
"I've only been following this advice for 2 weeks and I am SO much better! Formed BMs in the morning only, once or twice then nothing all day. And I can run without needing to go - a revelation! I am GF/SF/DF/EF, I eat turkey, sardines or game meat/ rice (white Basmati or risotto)/ overcooked parsnips or carrots/occasionally one type of GF bread with no soy or gums."
What is "EF"?
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armstrongpilot
- Adélie Penguin
- Posts: 121
- Joined: Wed Sep 02, 2015 4:31 pm
hi! Glad you are on here. I was 33 when diagnosed. I'm stuck in same boat as you....either its watery d or I take immodium and am constipated. Doctor kept wanting me to take fiber....always made it worse. Because his treatment didn't work he says i must have ibs......Tomorrow I am talking with a mayo clinic doctor. Will pass on any advice I get.