Hello everyone,
My name is Karen, I am 43 years old and married with four children. I have collagenous colitis, refractory celiac sprue, spinal stenosis, endometriosis and hypothyroidism.
We have tried the whole 9 yards in regards to treatment. Started with Pepto, then onto budesonide, then onto prednisone. Nothing improved the massive amount of watery diarrhea that I have. After my next biopsy next month to test the villi again, my gastro specialist will be starting me again on a stronger dose of prednisone for a longer period of time to see if that does the trick.
I have been gluten free for three years, bloodwork shows my antibodies are way down, so I am following the diet to the letter. Unfortunately, I continue to have the explosive diarrhea, fecal incontenance and flattened villi. I also am severely anemic and he will be starting me on IV iron soon.
Just wanted to introduce myself and hope to make some new friends here. I am very active in the www.celiac.com forum also.
Karen
Introduction......
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Canadian Karen
- Little Blue Penguin
- Posts: 33
- Joined: Thu May 11, 2006 8:54 pm
- Location: outside Toronto, Ontario
Introduction......
celiac disease (diagnosed as refractory)
collagenous colitis
spinal stenosis
endometriosis
hypothyroidism
collagenous colitis
spinal stenosis
endometriosis
hypothyroidism
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Hi Karen,
Welcome to our home! You have found a very supportive group here.
Many of our members have found that when a gf diet alone does not resolve the D, then there are other intolerances at work. I think dairy and soy are probably the next two most common intolerances. Have you tried elimiation of other food types?
I'm sure everyone else will be along to welcome you.
Katy
PS: I suffered endometriosis too
. Finally had a hysterectomy in november because I had firoids too, which caused insanely heavy periods. My CC was triggered (I believe) by ibuprofen use for painful periods. A month after stopping ibuprofen use, the D went away. I've since found I'm gluten sensitive (no celiac in terms of the classic definition), and after rotating my pain meds (Vioxx then Naproxen when the vioxx quit working) I'm now able to tolerate ibuprofen again.
Welcome to our home! You have found a very supportive group here.
Many of our members have found that when a gf diet alone does not resolve the D, then there are other intolerances at work. I think dairy and soy are probably the next two most common intolerances. Have you tried elimiation of other food types?
I'm sure everyone else will be along to welcome you.
Katy
PS: I suffered endometriosis too
. Finally had a hysterectomy in november because I had firoids too, which caused insanely heavy periods. My CC was triggered (I believe) by ibuprofen use for painful periods. A month after stopping ibuprofen use, the D went away. I've since found I'm gluten sensitive (no celiac in terms of the classic definition), and after rotating my pain meds (Vioxx then Naproxen when the vioxx quit working) I'm now able to tolerate ibuprofen again.
Karen! Glad to have your with us. This is a such a terrific and supportive group of people!You have really been through so much! I am so sorry to hear how you have suffered.
Like Katy, I suggested considering a dairy intolerance if you haven't done so already. My nutritionist told me that even small amounts of dairy - if you are intolerant - can be as damaging as gluten. I was suprised to find that I am caseing intolerant (a milk protein) when I took Dr. Fine's test for gluten sensitivity. It filled in another big piece in my illness puzzle. You've probably already consider this, but just in case!
You will definitely find a great group of friends here! Warmly, Celia
I beleive in magic!
Welcome to the most supportive group on the net!
I have collagenous colitis which I believe was brought on thru taking 28 visicol tablets to prep for a colonoscopy. I was fine before I took the prep.. the D never stopped after taking the first 4 of the 28 pills.
After three years, I finally agreed to take medication to try to control the illness. Asacol made me sick. Last November I decided to try Entocort EC which works for me.
I am old tho.. so any long term (or genetic) effects of drugs was not a major concern of mine.. but I sure would like a quality of life even though I am over 60:)
You will find all of the warm support here you could want.. for an illness that is baffling and frustrating!
grannyh
I have collagenous colitis which I believe was brought on thru taking 28 visicol tablets to prep for a colonoscopy. I was fine before I took the prep.. the D never stopped after taking the first 4 of the 28 pills.
After three years, I finally agreed to take medication to try to control the illness. Asacol made me sick. Last November I decided to try Entocort EC which works for me.
I am old tho.. so any long term (or genetic) effects of drugs was not a major concern of mine.. but I sure would like a quality of life even though I am over 60:)
You will find all of the warm support here you could want.. for an illness that is baffling and frustrating!
grannyh
Boy, Karen, you must have felt like 
I'm so sorry you have all those health problems. I do hope your family understands and is supportive. Congratulations on being gluten free for so long. It's not an easy thing to do.
I have Lymphocytic colitis and hypothyroidism. I'm suprised the prednisone didn't help. That + Asacol is what they gave me in the beginning. I hated pred and it really messed up my metabolism (in my opinion). It's still messed up. I had a hard time getting off it because I kept getting body aches and fever when I lowered the dose to a certain point. I finally told the doc. I was coming off it no matter what..THEN he put me on Entocort + Asacol for a while. Had no problem with that. Now am only on 4 Asacol a day and it's controling the symptoms well enough.
I sure hope you can find out what's causing the D to continue. I know you will get lots of support and suggestions from this great group.
Love, Shirley
.
I'm so sorry you have all those health problems. I do hope your family understands and is supportive. Congratulations on being gluten free for so long. It's not an easy thing to do.
I have Lymphocytic colitis and hypothyroidism. I'm suprised the prednisone didn't help. That + Asacol is what they gave me in the beginning. I hated pred and it really messed up my metabolism (in my opinion). It's still messed up. I had a hard time getting off it because I kept getting body aches and fever when I lowered the dose to a certain point. I finally told the doc. I was coming off it no matter what..THEN he put me on Entocort + Asacol for a while. Had no problem with that. Now am only on 4 Asacol a day and it's controling the symptoms well enough.
I sure hope you can find out what's causing the D to continue. I know you will get lots of support and suggestions from this great group.
Love, Shirley
.
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Karen,
Welcome to our online family. Please feel free to ask anything you want. We won't be grossed out--most of us have been there, done that, (including the accidents, that make this such a debilitating condition).
As Katy mentioned, many of us have found other food, (or med), intolerances, that were the remaining key that allowed us to get our symptoms under control, once we eliminated them from our diet. Another member named Karen, (moremuscle), for example, had severe symptoms, until she discovered that the lectins in soy, were causing her problems.
As was already mentioned, after gluten, the casein in dairy products is probably the next most common trigger. Of course, if you still have villous atrophy, then you are probably already aware that you are likely to be lactose intolerant.
Several of us are intolerant of corn, and a few have problems with soy, eggs, yeast, citric acid, carrageenan, and probably a few that don't come to mind right now.
Refractory sprue is a very humbling condition, but I can't help but believe that a key lies in your diet somewhere, and hopefully you can find it.
The spinal stenosis caught my eye. I assume that your's is acquired, rather than primary. I'm guessing that this is probably connected with the whole autoimmune complex that many of us have to deal with. This past November, I had emergency abdominal surgery to remove a stenosis in my sigmoid colon, for example.
By learning from each other, most of us here have develped our own treatment programs that we use to control our symptoms. Sometimes we're able to fine tune our treatments, as we continue to learn. Some of us use diet, some use meds, and some use a combination treatment. Some of us even find that after a long period without symptoms, we can discontinue our treatment, and remain symptom free. For most of us, though, we have to continue whatever treatment works for us, at least for the forseeable future. Whatever it takes, we do what we have to do, to get our lives back.
I hope that you can find the missing key to resolve your symptoms, and I hope that we can help you to find that key. We will certainly do our best to help in any way we can.
If you have any questions about how the board operates, or anything else, please don't hesitate to ask. For example, to use the emoticons to the left of the text composing window, just click on a smilie, and it will appear in your message. You can cut and paste them to move them to other locations in your message, including the topic line. To see more emoticons, click on the View more Emoticons link.
Again, welcome aboard.
Tex
P S Almost forgot, if you want to use an avatar, (the little picture that shows beside the posts), you can enter an URL into the window for that information in your profile, for one that is stored on a remote server, (maximum file size 6kb), or you can email me a picture, and I will be happy to make an avatar for you and upload it into the custom avatar gallery. Or, there are some generic avatars in the avatar gallery, (accessable through your profile), that you can select.
Welcome to our online family. Please feel free to ask anything you want. We won't be grossed out--most of us have been there, done that, (including the accidents, that make this such a debilitating condition).
As Katy mentioned, many of us have found other food, (or med), intolerances, that were the remaining key that allowed us to get our symptoms under control, once we eliminated them from our diet. Another member named Karen, (moremuscle), for example, had severe symptoms, until she discovered that the lectins in soy, were causing her problems.
As was already mentioned, after gluten, the casein in dairy products is probably the next most common trigger. Of course, if you still have villous atrophy, then you are probably already aware that you are likely to be lactose intolerant.
Several of us are intolerant of corn, and a few have problems with soy, eggs, yeast, citric acid, carrageenan, and probably a few that don't come to mind right now.
Refractory sprue is a very humbling condition, but I can't help but believe that a key lies in your diet somewhere, and hopefully you can find it.
The spinal stenosis caught my eye. I assume that your's is acquired, rather than primary. I'm guessing that this is probably connected with the whole autoimmune complex that many of us have to deal with. This past November, I had emergency abdominal surgery to remove a stenosis in my sigmoid colon, for example.
By learning from each other, most of us here have develped our own treatment programs that we use to control our symptoms. Sometimes we're able to fine tune our treatments, as we continue to learn. Some of us use diet, some use meds, and some use a combination treatment. Some of us even find that after a long period without symptoms, we can discontinue our treatment, and remain symptom free. For most of us, though, we have to continue whatever treatment works for us, at least for the forseeable future. Whatever it takes, we do what we have to do, to get our lives back.
I hope that you can find the missing key to resolve your symptoms, and I hope that we can help you to find that key. We will certainly do our best to help in any way we can.
If you have any questions about how the board operates, or anything else, please don't hesitate to ask. For example, to use the emoticons to the left of the text composing window, just click on a smilie, and it will appear in your message. You can cut and paste them to move them to other locations in your message, including the topic line. To see more emoticons, click on the View more Emoticons link.
Again, welcome aboard.
Tex
P S Almost forgot, if you want to use an avatar, (the little picture that shows beside the posts), you can enter an URL into the window for that information in your profile, for one that is stored on a remote server, (maximum file size 6kb), or you can email me a picture, and I will be happy to make an avatar for you and upload it into the custom avatar gallery. Or, there are some generic avatars in the avatar gallery, (accessable through your profile), that you can select.
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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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Hiya Karen and greetings to U upon joining our family
Well, U really have had the full blast of fall on U---
I am MCC---had Asacol---didnt help----then Colazal+pred. which calmed everything down----I changed Gi's and since 1991,with the help of this GI., I gotten to a controlled point--had the ups and downs but have learned to *cope* and *GRIPE* too --
Right now am being tested for a thyroid issue----and wondering how long this has been a problem??
Nice to meet U
Barbara
Well, U really have had the full blast of
fall on U---I am MCC---had Asacol---didnt help----then Colazal+pred. which calmed everything down----I changed Gi's and since 1991,with the help of this GI., I gotten to a controlled point--had the ups and downs but have learned to *cope* and *GRIPE* too --
Right now am being tested for a thyroid issue----and wondering how long this has been a problem??
Nice to meet U
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Welcome Karen! You have joined the most AWESOME family on the net (IMHO)!! Everyone will do thier best to make you feel welcome and answer any questions you may have. If we don't know, we have some excellent "googlers" on board!
You have received some good advice and information so far. There are many links, answers and posts from some very knowledgeable people here. I hope you join right in and make yourself at home!
Mars
You have received some good advice and information so far. There are many links, answers and posts from some very knowledgeable people here. I hope you join right in and make yourself at home!
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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Canadian Karen
- Little Blue Penguin
- Posts: 33
- Joined: Thu May 11, 2006 8:54 pm
- Location: outside Toronto, Ontario
Thank you for the wonderful welcome! It sounds like you guys have a wonderful community support system here..... I hope to contribute!
I am rather computer illiterate. I have a pic that I use as my avatar at celiac.com, but can't seem to get it working here. I e-mailed Tex to see if he can work some magic!
Again, I thank you for the very warm welcome!
Hugs.
Karen
I am rather computer illiterate. I have a pic that I use as my avatar at celiac.com, but can't seem to get it working here. I e-mailed Tex to see if he can work some magic!
Again, I thank you for the very warm welcome!
Hugs.
Karen
celiac disease (diagnosed as refractory)
collagenous colitis
spinal stenosis
endometriosis
hypothyroidism
collagenous colitis
spinal stenosis
endometriosis
hypothyroidism
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Hi Karen. Welcome to our family. I also Have MCC. I was taking Asacol up until 7 weeks ago. I am not without meds and am hanging in there with out the dredded D. Again welcome...Almost Nothing grosses us out here. Ask away! 
Oma
Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
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Canadian Karen
- Little Blue Penguin
- Posts: 33
- Joined: Thu May 11, 2006 8:54 pm
- Location: outside Toronto, Ontario
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Canadian Karen
- Little Blue Penguin
- Posts: 33
- Joined: Thu May 11, 2006 8:54 pm
- Location: outside Toronto, Ontario
I was diagnosed with endo in my early 20's. I actually was told I would have a 50/50 chance of ever being able to conceive. I got married at 29 and we figured we would start trying right away and hopefully in a couple of years we would get lucky. Four months later I was pregnant! I now have a 12 yr dd, 7 yr dd and 5 yr twin boys. I feel like going back to that ob/gyn with all kids in tow and say "Hey, remember me?""kate_ce1995"
Hi Karen,
PS: I suffered endometriosis too
I have recently starting having complications though. I have started having really heavy ones and an ultrasound showed the wall getting thicker and thicker.... So far, they only gave me Anaprox to deal with the severe cramping, but I guess eventually when it gets worse, I will have to look at other options..... When you have a hysterectomy, does it effect your mood wise etc.? Do you take HRT?
Hugs.
Karen
celiac disease (diagnosed as refractory)
collagenous colitis
spinal stenosis
endometriosis
hypothyroidism
collagenous colitis
spinal stenosis
endometriosis
hypothyroidism
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Canadian Karen
- Little Blue Penguin
- Posts: 33
- Joined: Thu May 11, 2006 8:54 pm
- Location: outside Toronto, Ontario
LOL! Thanks Peggy! Thank goodness for L'Oreal Preference (I went totally gray in my early 20's .....)"Peggy"
Wow - what a dang good looking Canuck!
The avatar seems to be jes' fine (thanks to our Tex!)
Canadian Peg
Karen
celiac disease (diagnosed as refractory)
collagenous colitis
spinal stenosis
endometriosis
hypothyroidism
collagenous colitis
spinal stenosis
endometriosis
hypothyroidism