hello everyone! Thank you for the kind emails. I'm doing a lot better. i can eat and i have a lot more strength. I just got back from my GI apt today. My doc confirmed LC again but he is questioning some of my other symptoms such as my stomache pains and my bleeding. he won't rule out Cr or UC. So on april 19th they are doing an MRI on my small intestines. he told me he wants to look more into my small intestines. He also said the next step is a Camera pill possibly. I don't really understand why hes still questioning the other 2 diseases. He seems to contradict his self it seems because he also says he believes I just might be a serve MC. Its kinda confusing. Thank goodness i got free medical with as much testing as i have had done. The doc also says my age can have a lot to do with my MC. He told me not much is "known" about people with my age with MC. He says i'm the youngest he's diagnosed. I dunno it just kinda sounds like he just doesnt understand. I've also been on Enecort for almost 2 weeks now. I know this may be silly but i seem to be "breaking out" in acne alot! I know i know! i know what ya'll are thinking i'm still young so i get acne...lol But really i only get a few pimples every now and then but man do i feel like a greasy pizza lately. The crappy part is so be honest is i'm breaking out on my chest and shoulders more than anything. The doc wants me to be on Enecort for atleast 3 months. I feel like i'm on so many meds lately it sucks. Good news is i get to go back to work on monday. I've been out of work for 2 weeks! i can't believe it! Thank goodness for the marine Corps that i still get a pay check, free medical, and free prescriptions!!! lol. On another note i really wish there was more research on how people get MC. What triggers it? This also makes me think of my deployment to Iraq in 08. We shower and eatoods that are washed in "unpotable" water. I did get food poisening out there from eating a salad at the chow hall. i dunno maybe thats silly.
Oh yeah some other news my poor puppy Moose broke his leg this week. poor lil guy! he is a min pin. He looks so sad in his huge leg cast! lol
OH!!!! FYI the month of May is California's Colitis awareness month! I will be doing a 3k walk called Take Steps. My team is Lymphocytic Colitis Team. It will be in San Diego! So if any one wants to check it out you can google all about it! The money goes to finding a cure and research for all types of Colitis! http://online.ccfa.org/site/TR/Walk/Cha ... fr_id=1751
I hope everyone is doing good. Ive missed you all.
The worste
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Olivia-Micro-Colitis
- Adélie Penguin
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- Location: Fallbrook, Ca
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Gabes-Apg
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- Location: Hunter Valley NSW Australia
i should have read this post first
you sound much much better. which is fantastic.
strangely enough I too have had bad acne since having MC, and i am not on Endocort. My acupuncturist says that it is my body releasing toxins as the digestion system is not working normally.
chest, shoulders and top of my arms.
It is still very humid summer here in Brisbane Australia so i dont think that is helping things.
and poor Moose ( i love the name) hope he gets better soon.
you sound much much better. which is fantastic.
strangely enough I too have had bad acne since having MC, and i am not on Endocort. My acupuncturist says that it is my body releasing toxins as the digestion system is not working normally.
chest, shoulders and top of my arms.
It is still very humid summer here in Brisbane Australia so i dont think that is helping things.
and poor Moose ( i love the name) hope he gets better soon.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Olivia!
So happy to hear about your progress. Keep it up!
You asked about the causes of MC. Often there is an underlying genetic predisposition, and we can identify family members with gut diseases or other autoimmune diseases. Other suspected causes include the of use NSAIDS (aspirin, Motrin, Advil, ibprofen, Aleve), antibiotics, HRT (hormone replacement therapy, and the proton-pump inhibitors often used to treat reflux. I think some cases can start with a gut infection, so perhaps that unhealthy water played a role.
Min pins are adorable! Hope your little guy recovers quickly.
And you are on the Lymphocytic Colitis team in a race! That is SOOOO cool! Wish I could join you. Be sure to let us know how you do!
Love,
Polly
So happy to hear about your progress. Keep it up!
You asked about the causes of MC. Often there is an underlying genetic predisposition, and we can identify family members with gut diseases or other autoimmune diseases. Other suspected causes include the of use NSAIDS (aspirin, Motrin, Advil, ibprofen, Aleve), antibiotics, HRT (hormone replacement therapy, and the proton-pump inhibitors often used to treat reflux. I think some cases can start with a gut infection, so perhaps that unhealthy water played a role.
Min pins are adorable! Hope your little guy recovers quickly.
And you are on the Lymphocytic Colitis team in a race! That is SOOOO cool! Wish I could join you. Be sure to let us know how you do!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Olivia,
My MC was finally diagnosed after my digestive tract seemed to spiral out of control with multiple disorders after spending three months in the middle east with highly questionable food handling. I would regularly travel overseas for months at a time for the military and my GI at the time was starting to see more and more military with digestive issues like MC and Chrons. He was trying to come up with reasons why the military population might be having more trouble and had a theory that the length of time of the overseas deployments might play a role. If someone does a short vacation overseas, that person might get sick from the local microbial flora, but the exposure isn't enough to where the immune system might try to adapt. With the several month military deployments, the exposure might be long enough to where the immune system might try to adapt, but then you come back between deployments and the immune system still has to deal with the microbes here too making the immune system a little more sensitive. From what I've read in other posts here (especially the ones on autoimmunity in MS), I think the large number of vaccinations required by the military for deployments may contribute as well. Right before deployment, every potentially useful vaccine is updated, which means a large load of adjuvants putting the immune system into hyperdrive and then you introduce new microbial flora. Give the immune system a big ole yikes!
It certainly makes sense to me that in that situation the immune system might try to come up with a big catch-all and in the process set off an autoimmune disorder or two.
Although you have the diagnosis of LC, I'd encourage you to keep going with the other tests as long as they want to keep looking for other things. In my case, my entire digestive tract was affected, so it wasn't just LC and Entocort alone wasn't sufficient. Actually, part of the reason why Entocort wasn't totally effective was that with the problems in the upper part of my digestive tract, I wasn't always dissolving the capsule coating so I wasn't getting a consistent dose. I did the other tests over the course of years because I was responding as well as my doctors liked to medication, but then there was always the question of whether these other things were there all along or in response to one or more of the treatments we were trying. That's why I'd encourage you to do the other tests now.
Glad to hear you are doing better!
Karen
My MC was finally diagnosed after my digestive tract seemed to spiral out of control with multiple disorders after spending three months in the middle east with highly questionable food handling. I would regularly travel overseas for months at a time for the military and my GI at the time was starting to see more and more military with digestive issues like MC and Chrons. He was trying to come up with reasons why the military population might be having more trouble and had a theory that the length of time of the overseas deployments might play a role. If someone does a short vacation overseas, that person might get sick from the local microbial flora, but the exposure isn't enough to where the immune system might try to adapt. With the several month military deployments, the exposure might be long enough to where the immune system might try to adapt, but then you come back between deployments and the immune system still has to deal with the microbes here too making the immune system a little more sensitive. From what I've read in other posts here (especially the ones on autoimmunity in MS), I think the large number of vaccinations required by the military for deployments may contribute as well. Right before deployment, every potentially useful vaccine is updated, which means a large load of adjuvants putting the immune system into hyperdrive and then you introduce new microbial flora. Give the immune system a big ole yikes!
It certainly makes sense to me that in that situation the immune system might try to come up with a big catch-all and in the process set off an autoimmune disorder or two.Although you have the diagnosis of LC, I'd encourage you to keep going with the other tests as long as they want to keep looking for other things. In my case, my entire digestive tract was affected, so it wasn't just LC and Entocort alone wasn't sufficient. Actually, part of the reason why Entocort wasn't totally effective was that with the problems in the upper part of my digestive tract, I wasn't always dissolving the capsule coating so I wasn't getting a consistent dose. I did the other tests over the course of years because I was responding as well as my doctors liked to medication, but then there was always the question of whether these other things were there all along or in response to one or more of the treatments we were trying. That's why I'd encourage you to do the other tests now.
Glad to hear you are doing better!
Karen
Hi Olivia,
Good to see you back here, we were worried about you.
Everything Karen just said makes all the sense in the world. I've always questioned WHICH CAME FIRST in relation to medications causing MC/LC as we wouldn't take meds if we weren't already exhibiting signs of auto-immune disorders. I can trace symptoms of this back to early childhood when I would have weeks of D and pain that were stress related in origination. I had all signs of endometriosis from my first period in 7th grade. I can trace the beginnings of my long cycle of D,prior to my dx w/MC, to an exacerbation of arthritic symptoms that began after a really bad bout of food poisoning. This was the same with my daughter, who got a bad stomach virus while traveling in Europe 18 years ago and has had IBS or ?? ever since.
Do you remember any early incidents of stomach problems from early childhood? As Karen said - the vaccines you must have had surely play a part here and clearly being deployed to Iraq would be a major stress factor. If you haven't watched the video that I think Karen is referring to then you should. It was a watershed moment for me and makes it easy to understand how all this plays out in the gut. Here is a link - it is about a half hour lecture - worth every second: http://wildhorse.insinc.com/directms03oct2007/
Connie
Good to see you back here, we were worried about you.
Everything Karen just said makes all the sense in the world. I've always questioned WHICH CAME FIRST in relation to medications causing MC/LC as we wouldn't take meds if we weren't already exhibiting signs of auto-immune disorders. I can trace symptoms of this back to early childhood when I would have weeks of D and pain that were stress related in origination. I had all signs of endometriosis from my first period in 7th grade. I can trace the beginnings of my long cycle of D,prior to my dx w/MC, to an exacerbation of arthritic symptoms that began after a really bad bout of food poisoning. This was the same with my daughter, who got a bad stomach virus while traveling in Europe 18 years ago and has had IBS or ?? ever since.
Do you remember any early incidents of stomach problems from early childhood? As Karen said - the vaccines you must have had surely play a part here and clearly being deployed to Iraq would be a major stress factor. If you haven't watched the video that I think Karen is referring to then you should. It was a watershed moment for me and makes it easy to understand how all this plays out in the gut. Here is a link - it is about a half hour lecture - worth every second: http://wildhorse.insinc.com/directms03oct2007/
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Hi Olivia,
I have read a few of your posts- I check in now and then but do not post often. I thought I would share my story with you...
I'm 27 years old and was diagnosed with MC over a year and a half ago (roughly). Though I believe I have had it all of my adult life. I do not know if I have CC or LC, though to me it doesn't really matter. Basically I have had chronic D for as long as I can remember, never having "normal" digestive function. I would like to stress, I do not have it nearly as bad as many people who post on this site though. I never have a problem with C, by the way.
I have gone to a GI since I was in my mid teens. I was diagnosed with a hiatal hernia around 16 or 17 and was put on a PPI, (proton pump inhibitor) which I took everyday for almost 10 years. It was a very rare thing for a teenager to be diagnosed with a hiatal hernia - because I was young and I was a normal weight. I always asked if there were long term side effects and was alway told there weren't. As it turns out, there just wasn't enough research on taking something like that long term.
I just always figured I had a "bad stomach" and that was that. It was annoying and kept me from doing alot of things, but I just learned to not eat on days I had stuff to do. That is what worked for me, my D seems to stem from eating in general - I have kept multiple food journals and have NEVER found one thing to always make me sick. It's very frustrating, one day I can eat something and be fine, the next eat the exact same thing and be sick all day.
About 2 years ago I started to do some research on my own and found something that made me feel like I got hit right in the face. PPI's tend to block the absorbtion of calcium. Imagine my surprise being a 20 something woman- The main thing we need is calcium! So I went to a new GI and was taken off of the PPI (Nexium at the time). I still have a hernia, but the body is an amazing thing- after a few months I developed less stomach acid and now I am basically heart burn free. I fully believe my MC was caused by taking a PPI.
I have taken Cholestomine (spelling?) and Asacol with no change. I also took daily Imodium for awhile, and that didn't seem to help too much. I still take Imodium when I have really bad days.
I know this is not your story and is not the case for you but I thought it might help to hear a story from someone in their 20's. You need to know you are not alone with this. It is a horrible disease and most people do not, and can not, understand how it makes you feel. It can be a bit of a lonely disease, but I am glad you found this board. The people on here are amazing, they are all so wonderful! I am praying for you and I hope you continue to get better. Thank you from the bottom of my heart for the service you are doing for this country.
Good luck!
Mackenzie
I have read a few of your posts- I check in now and then but do not post often. I thought I would share my story with you...
I'm 27 years old and was diagnosed with MC over a year and a half ago (roughly). Though I believe I have had it all of my adult life. I do not know if I have CC or LC, though to me it doesn't really matter. Basically I have had chronic D for as long as I can remember, never having "normal" digestive function. I would like to stress, I do not have it nearly as bad as many people who post on this site though. I never have a problem with C, by the way.
I have gone to a GI since I was in my mid teens. I was diagnosed with a hiatal hernia around 16 or 17 and was put on a PPI, (proton pump inhibitor) which I took everyday for almost 10 years. It was a very rare thing for a teenager to be diagnosed with a hiatal hernia - because I was young and I was a normal weight. I always asked if there were long term side effects and was alway told there weren't. As it turns out, there just wasn't enough research on taking something like that long term.
I just always figured I had a "bad stomach" and that was that. It was annoying and kept me from doing alot of things, but I just learned to not eat on days I had stuff to do. That is what worked for me, my D seems to stem from eating in general - I have kept multiple food journals and have NEVER found one thing to always make me sick. It's very frustrating, one day I can eat something and be fine, the next eat the exact same thing and be sick all day.
About 2 years ago I started to do some research on my own and found something that made me feel like I got hit right in the face. PPI's tend to block the absorbtion of calcium. Imagine my surprise being a 20 something woman- The main thing we need is calcium! So I went to a new GI and was taken off of the PPI (Nexium at the time). I still have a hernia, but the body is an amazing thing- after a few months I developed less stomach acid and now I am basically heart burn free. I fully believe my MC was caused by taking a PPI.
I have taken Cholestomine (spelling?) and Asacol with no change. I also took daily Imodium for awhile, and that didn't seem to help too much. I still take Imodium when I have really bad days.
I know this is not your story and is not the case for you but I thought it might help to hear a story from someone in their 20's. You need to know you are not alone with this. It is a horrible disease and most people do not, and can not, understand how it makes you feel. It can be a bit of a lonely disease, but I am glad you found this board. The people on here are amazing, they are all so wonderful! I am praying for you and I hope you continue to get better. Thank you from the bottom of my heart for the service you are doing for this country.
Good luck!
Mackenzie