Collagenous colitis and constipation
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Collagenous colitis and constipation
HI! My name is Hollie and I was recently diagnosed with collagenous colitis and also have a severe vitamin d deficiency (<3.7). Im 34yrs old. Now for about 2 years I have had symptoms all over the place. (Abd pain, fevers unexplained - its a constant 99-101, full body pain, rash on face plus many many more)This is slightly explaining some of them, but not all. I also don't have the crazy diarrhea most of you have. The doctor is questioning other autoimmune diseases as well. I was sent away from the Gastro's office with Amitiza (to help with constipation) and gave 12 vials of blood. I have a CT scan of Friday, plus a bacteria and lactose test in October. I was told my blood work would be back in a month when I come back in. Until then, Im just left with this diagnosis, trying to learn more about it. Do any of you have the constipation issue as well? If there is anything you could tell me about CC, what would it be? Thanks in advance!!
Hollie, there are quite a few here that have suffered with constipation and I'm sure they'll chime in. I had pretty severe entometriosis too and it was the worst pain I've ever experienced. I can't imagine having it alongside MC. Read as much of this site as you can. Most of us have found significant relief by changing our diets (especially gluten, dairy and soy). We have found our doctors pretty clueless about knowing how to treat us. Deb
Thanks Deb :) I have been reading and reading and I am noticing how rare this is. This may be one of the reasons I just got diagnosed now even though my colonoscopy and biopsy were in February. All it took was for a new NP to review my chart and notice the results. I am in a lot of pain, but mostly body pain. As if I have the flu and have been hit by a truck. Add in the exhaustion, I don't know how i'm surviving working and being a single mom. Everyday I'm pushing myself to my limit.
My new primary doc who i was forced into seeing (per new insurance) isn't very supportive of my health issues, blames everything on me being a girl and hormones and says nothing is wrong with me. It will now be nice to have another diagnosis to prove to him I'm not just making stuff up. Another question I forgot to mention previously: Have any of you experienced weight gain? I gained 20 lbs in 2 weeks last month with no explanation. Im barely eating 1000 calories a day. Just was wondering if it could be related to the CC even though I'm seeing weight loss as an average.
My new primary doc who i was forced into seeing (per new insurance) isn't very supportive of my health issues, blames everything on me being a girl and hormones and says nothing is wrong with me. It will now be nice to have another diagnosis to prove to him I'm not just making stuff up. Another question I forgot to mention previously: Have any of you experienced weight gain? I gained 20 lbs in 2 weeks last month with no explanation. Im barely eating 1000 calories a day. Just was wondering if it could be related to the CC even though I'm seeing weight loss as an average.
Welcome Hollie! I also got diagnosed with MC at age 34, after having 2 kids, but my autoimmune issues started after the first pregnancy. A D level that low, low grade fever, flu symptoms and facial rashes suggest autoimmune disease to me. Or maybe tick-borne illness like Lyme disease? They should check your ANA level first, then all the other autoantibodies. What is the CT scan for?? That's a heavy-duty test. Do you know what they are looking for? Flu symptoms can also be gluten intolerance or celiac disease finally making itself known. Have you had bloodwork for celiac yet? I had those symptoms for many days until I realized the toast and pasta I was eating were making me worse. Testing through Enterolab.com showed me I was sensitive to gluten, dairy and soy, and my symptoms improved dramatically after I eliminated them from my diet.
I am one of many here with autoimmune issues beyond MC. Lucky for me, I think the diet and improving my Vit D levels has allowed me to stay "Undifferentiated" so I don't have Lupus, RA, Hepatitis, or anything else yet. My hope is to keep it that way and never have to take steroids or immune suppressants. You are early enough in this process that making changes now could prevent life-altering autoimmune diseases down the road. But it requires lots of willpower.
I am one of many here with autoimmune issues beyond MC. Lucky for me, I think the diet and improving my Vit D levels has allowed me to stay "Undifferentiated" so I don't have Lupus, RA, Hepatitis, or anything else yet. My hope is to keep it that way and never have to take steroids or immune suppressants. You are early enough in this process that making changes now could prevent life-altering autoimmune diseases down the road. But it requires lots of willpower.
Nice to meet you (ps im a HUGE penguin fanatic, love your penguins!) Im not quite sure what they are looking for, at this point anything im assuming.
*I have had an ANA done last year and this year, both came back negative. They originally thought it was Lupus with all my symptoms and blood in urine and feces sometimes, but that got thrown out the window with the negative test.
*Fibromyalgia has been mentioned, I do have 12 of the tender points, but i wasnt given a formal diagnosis and the rhuematologist said as much as she wanted to help me find a diagnosis, it wasnt in rheumatology.
*My last 3 Lyme tests came back negative, but the new gastro doc ordered another lyme, a different type than they normally do (not sure which one)
*They also restested my Vitamin levels. I started taking Vit d 50,000 units once a week back in April, half way through my level went up to 25, and now that Im done with that treatment, they want to see what its at now, plus all other vitamin levels. Then Vit D treatment KILLED me though, it made my pain SOOOO much worse and increased my burning symptom (i feel as though my blood is on fire, its painful as can be and leaves my skin feeling bruised)
*They have tested my thyroid a few times as well, all say Im fine (I hate being told "You are fine")
*They did blood work on my liver, that was normal too, but an ultrasound showed it to be enlarged and fatty. Nothing was ever done about that since blood work was fine (I dont even drink)
*The CT im assuming is to rule out anything they can see. Endometreosis cant be seen and I can feel it all the way up to my rib cage. She said she wants to make sure everything looks as it should, in the right place and not twisted about.
*The gastro just did labs for celiac disease. She told me NOT to eat different until all test show positive or negative. Honestly, from reading everything, it does sound like a possibility and to have to wait another month before trying it is a pain in the butt. I want to do anything I can to feel better, not wait anymore.
Im just soo soo nervous they will do all of this and nothing will show again and this diagnosis will be made to be unimportant as the endometreosis and Vit D were and Ill be back at square one again. Trying to keep the faith that SOMETHING will show because i feel worse and worse everyday.
*I have had an ANA done last year and this year, both came back negative. They originally thought it was Lupus with all my symptoms and blood in urine and feces sometimes, but that got thrown out the window with the negative test.
*Fibromyalgia has been mentioned, I do have 12 of the tender points, but i wasnt given a formal diagnosis and the rhuematologist said as much as she wanted to help me find a diagnosis, it wasnt in rheumatology.
*My last 3 Lyme tests came back negative, but the new gastro doc ordered another lyme, a different type than they normally do (not sure which one)
*They also restested my Vitamin levels. I started taking Vit d 50,000 units once a week back in April, half way through my level went up to 25, and now that Im done with that treatment, they want to see what its at now, plus all other vitamin levels. Then Vit D treatment KILLED me though, it made my pain SOOOO much worse and increased my burning symptom (i feel as though my blood is on fire, its painful as can be and leaves my skin feeling bruised)
*They have tested my thyroid a few times as well, all say Im fine (I hate being told "You are fine")
*They did blood work on my liver, that was normal too, but an ultrasound showed it to be enlarged and fatty. Nothing was ever done about that since blood work was fine (I dont even drink)
*The CT im assuming is to rule out anything they can see. Endometreosis cant be seen and I can feel it all the way up to my rib cage. She said she wants to make sure everything looks as it should, in the right place and not twisted about.
*The gastro just did labs for celiac disease. She told me NOT to eat different until all test show positive or negative. Honestly, from reading everything, it does sound like a possibility and to have to wait another month before trying it is a pain in the butt. I want to do anything I can to feel better, not wait anymore.
Im just soo soo nervous they will do all of this and nothing will show again and this diagnosis will be made to be unimportant as the endometreosis and Vit D were and Ill be back at square one again. Trying to keep the faith that SOMETHING will show because i feel worse and worse everyday.
I'm guessing you were taking prescription D2? You should really be on D3, maybe 10,000 IU /day, which you can get on your own at a healthfood store.
If you had blood in your stool, you may be looking at Crohn's or UC, but I guess they didn't see anything during the colonoscopy?...blood is not common in MC.
There are many other infections that mimic Lyme symptoms - Babesiosis, Ehrlichiosis, Epstein Barr Virus, Cytomegalovirus, Mycoplasma, etc., etc.
I hope your tests show something that gives you some direction.
Fatty liver can happen in celiac disease. Here is some insight into the liver issues that can accompany celiac:
http://www.celiac.com/articles/21501/1/ ... Page1.html
If you had blood in your stool, you may be looking at Crohn's or UC, but I guess they didn't see anything during the colonoscopy?...blood is not common in MC.
There are many other infections that mimic Lyme symptoms - Babesiosis, Ehrlichiosis, Epstein Barr Virus, Cytomegalovirus, Mycoplasma, etc., etc.
I hope your tests show something that gives you some direction.
Fatty liver can happen in celiac disease. Here is some insight into the liver issues that can accompany celiac:
http://www.celiac.com/articles/21501/1/ ... Page1.html
Thank you for that link! Another thing pointing to celiac. I was taking the Vit D2 but honestly, i cant even take any vitamins right now. Even my daughters MVI kills me. It gets me to the point of being immobile the pain is so bad. Until I can figure out why, I really cant chance taking them. The colonoscopy did look fine, nothing was shown. Since they didn't get back to me about the biopsy from the colonoscopy, i thought that was fine as well. Guess not. I am very thankful for that inclination to review my chart and noticed the results.
There was never an explanation for the blood in stool. They took it as the test they used was inaccurate. (that paper test they use in the ER) Blood usually occurs after tearing of my endometreosis happens. Its hard to explain that to docs who dont see the endo on tests. I have begged for exploratory surgery so they can see how bad it is, and maybe get rid of some of it, but they all refuse. They say unless its a life or death situation, surgery is out of picture. Im prone to scar tissue so they say Ill just be worse if they cut me open. I wonder if being prone to scar tissue has anything to do with the CC? Hmm.
There was never an explanation for the blood in stool. They took it as the test they used was inaccurate. (that paper test they use in the ER) Blood usually occurs after tearing of my endometreosis happens. Its hard to explain that to docs who dont see the endo on tests. I have begged for exploratory surgery so they can see how bad it is, and maybe get rid of some of it, but they all refuse. They say unless its a life or death situation, surgery is out of picture. Im prone to scar tissue so they say Ill just be worse if they cut me open. I wonder if being prone to scar tissue has anything to do with the CC? Hmm.
Welcome Hollie. I see that Zizzle has given you some great insight. Just know that even if your celiac test comes back negative, it doesn't mean that you are not in the beginning stages of the disease. The test only comes back positive if there is a lot of intestinal vili damage already. I hate to say this, but your Doc obviously doesn't know much about celiac because it doesn't matter if you eat gluten or not when you take the test. It sounds like ( from all of your symptoms) that you should not be eating it ever again!
Check out the Enterolab web site. If you can afford the tests, they are well worth knowing what foods your body is rejecting ( and therefor giving you inflammation). I couldn't use the tests because it turns out that I am IgA deficient. It's probably why I have the autoimmune diseases that I do. Have you been checked for that?
As for the constipation, I know that Lesley has C dominant symptoms ( hopefully she will chime in), but most of us have D. Are you taking any drugs that might be making things worse?
Keep us posted. I hope you get some answers soon.
Leah
Check out the Enterolab web site. If you can afford the tests, they are well worth knowing what foods your body is rejecting ( and therefor giving you inflammation). I couldn't use the tests because it turns out that I am IgA deficient. It's probably why I have the autoimmune diseases that I do. Have you been checked for that?
As for the constipation, I know that Lesley has C dominant symptoms ( hopefully she will chime in), but most of us have D. Are you taking any drugs that might be making things worse?
Keep us posted. I hope you get some answers soon.
Leah
HI Leah :) They just did the IgA in the last blood draw I had, I will know that answer soon I hope. Maybe what I will do is try to eat gluten free if only for a couple days this week to see if I feel different at all. Is that a good average of days to test it out, or does it take more to feel any change? They only med Im on is Oxycodone. (I hate this med. This is the reason why im looked down upon but unfortuately, its the only thing covered that works. I have treid tons and tons of stuff, even lyrica, but it either didnt do anything, made it worse, or I found I was allergic to it) Oxy hasn't make me more constipated than I have been the last 8 yrs or so. The constipation started after my C-Section with my daughter. I always assumed it was scar tissue related and dealt with going only every 4 days or so. If anything, the Oxy made my stool softer. My body is weird, it reacts opposite of how it should be reacting.
As for autoimmune diseases. I do have the gene that causes PKU. I have had a DNA to show its inactive, but yet, I have to follow PKU guidelines and stay away from asparatame and phenylalanine or I become lethargic. I have asked multiple times if anything going on could be related to this and I have been told no. There have been no long term studies in the PKU world so I don't know how they can say that with confidence. My cousin, who also has the PKU gene that's inactive, was diagnosed with MS a few years back. This doesn't seem to interest any of the docs I see though.
As for autoimmune diseases. I do have the gene that causes PKU. I have had a DNA to show its inactive, but yet, I have to follow PKU guidelines and stay away from asparatame and phenylalanine or I become lethargic. I have asked multiple times if anything going on could be related to this and I have been told no. There have been no long term studies in the PKU world so I don't know how they can say that with confidence. My cousin, who also has the PKU gene that's inactive, was diagnosed with MS a few years back. This doesn't seem to interest any of the docs I see though.
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Gabes-Apg
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g'day Holly
welcome to the group - my MC was a 40th birthday present, but i know it was lingering for quite a few years before that, and I had digestion issues 'IBS' since childhood.
My MC transitioned from mostly D, to intermittant D and C. i have managed to get the science of what I eat (and when etc) figured out that there is minimal C issues. I spent 9 months figuring what foods work, and elminating the ones that dont, stuck to a low inflammation gut healing eating plan for 12 months.
i have other health issues, PCOS, other auto immune stuff, (unfortunately many of us do....)
the body pain and feeling like you have the flu - I would say about 90% of people here that had those symptoms, got rid of them by elminating Gluten or other major trigger ingredient like Dairy or Soy.
Alot of people on the forum struggle with being underweight, i am one that has struggled with weight gain, mostly because of thyroid and hormones, not directly because of MC. i have never been petite, but was never majorily overweight, with various situations and events of the past 12 months (teeth issues, histamine issues, hormone changes etc) i have gained 44lbs.
first priority is to get yourself feeling better, pain free with a good digestion process so that you absorb nutrients properly. then we can focus on weight loss!
please trust me when i say, you can be well, you can be full of energy and 'get your life back'
majority of the people that are part of this forum felt the same as you the day they joined. with quite a bit of patience and focus, you can figure out what works best for you.
good doctors are rare, good doctors that can support people with multiple issues is even more rare. MOst of the success stories amongst this group is those that 'self manage'.
there are wonderful people here that will answer questions and help you get your life back.
take a few deep breathes, relax. Take your time, there is a bit to read and learn and it can get a bit overwhelming.
my tag line for new people is that 'there is no right way or wrong way, there is your way'
the sucky part of this statement is that there is no quick fix or magic potion guaranteed to make it all right again!
welcome to the group - my MC was a 40th birthday present, but i know it was lingering for quite a few years before that, and I had digestion issues 'IBS' since childhood.
My MC transitioned from mostly D, to intermittant D and C. i have managed to get the science of what I eat (and when etc) figured out that there is minimal C issues. I spent 9 months figuring what foods work, and elminating the ones that dont, stuck to a low inflammation gut healing eating plan for 12 months.
i have other health issues, PCOS, other auto immune stuff, (unfortunately many of us do....)
the body pain and feeling like you have the flu - I would say about 90% of people here that had those symptoms, got rid of them by elminating Gluten or other major trigger ingredient like Dairy or Soy.
Alot of people on the forum struggle with being underweight, i am one that has struggled with weight gain, mostly because of thyroid and hormones, not directly because of MC. i have never been petite, but was never majorily overweight, with various situations and events of the past 12 months (teeth issues, histamine issues, hormone changes etc) i have gained 44lbs.
first priority is to get yourself feeling better, pain free with a good digestion process so that you absorb nutrients properly. then we can focus on weight loss!
please trust me when i say, you can be well, you can be full of energy and 'get your life back'
majority of the people that are part of this forum felt the same as you the day they joined. with quite a bit of patience and focus, you can figure out what works best for you.
good doctors are rare, good doctors that can support people with multiple issues is even more rare. MOst of the success stories amongst this group is those that 'self manage'.
there are wonderful people here that will answer questions and help you get your life back.
take a few deep breathes, relax. Take your time, there is a bit to read and learn and it can get a bit overwhelming.
my tag line for new people is that 'there is no right way or wrong way, there is your way'
the sucky part of this statement is that there is no quick fix or magic potion guaranteed to make it all right again!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
*deep breath* Thanks Gabes. Ill just keep reminding my self there IS going to be a time where I feel better. To wake up in the morning pain free and symptom free would be so amazing. Ill make that my drive to have patience. I was wondering if you could help me out with some definitions. The ones I know are:
MC - microscopic colitis
CC - collagenous colitis
LC - lymphocytic colitis
What does the D and C mean that I have seen mentioned?
MC - microscopic colitis
CC - collagenous colitis
LC - lymphocytic colitis
What does the D and C mean that I have seen mentioned?
Welcome!
C-constipation
D-diarrhea
I have MC and mast cell 'activation' issues. Mastocytosis or issues with mast cells might be worth a google search for you to see if you fall into any of the symptoms. I am 29 years old (no children) and I have endometriosis. I was dx when I was in my teens, had a laporoscopy when I was about 20 and was on the pill constantly ever since. I recently stopped the pill bc I thought it may have caused my MC and my monthly periods have been okay ever since. Many of my Drs said that being GF (gluten free) helps with the bleeding and cramps.
Again, welcome. A lot of people on this board are filled with great info, I hope you find answers soon.
Jenny
C-constipation
D-diarrhea
I have MC and mast cell 'activation' issues. Mastocytosis or issues with mast cells might be worth a google search for you to see if you fall into any of the symptoms. I am 29 years old (no children) and I have endometriosis. I was dx when I was in my teens, had a laporoscopy when I was about 20 and was on the pill constantly ever since. I recently stopped the pill bc I thought it may have caused my MC and my monthly periods have been okay ever since. Many of my Drs said that being GF (gluten free) helps with the bleeding and cramps.
Again, welcome. A lot of people on this board are filled with great info, I hope you find answers soon.
Jenny
Oh I think I figured it out...Constipation and Diarrhea correct? As I continue reading, I do have another question. When you all speak of feeling great going gluten free, then something sneaking past you and becoming ill again, is this usually a stomach upset? I don't tend to have any upset stomach when I eat. I do get the burning sensation through my body though, esp when eating fruits and veggies and all natural products. The intense abdominal pain comes only 2 min before a BM and lasts an hour or so after. I do have a constant soreness (not quite sure how to describe it) abdominal wise.
Nice to meet you Jenny! After my endo became so bad, I did have a partial hysterectomy to help with the pain (removal of uterus only) Sadly, this didnt help much, but I do have to say not having a period anymore is awesome, I only get pain from ovulation and the endo thats abundant in my system. As soon as I get paid this week, I plan on trying gluten free for the weekend. Wouldnt that be awesome if it helped :)