Hi all,
I have followed this forum for a while now, I was diagnosed with Celiac's disease and lymphocytic colitis back in 2010. Since then I have had 4 more kids and several moves (We are active duty military). I am 35 years old. I haven't taken time for myself but am now feeling so terrible, I have to get this under control.
A little background...As soon as I found out about celiac's disease, I went off gluten. It's not any trouble for me to not have it, I don't cheat and I am careful. I don't don't avoid anything else though. I had twins last August and since then have had terrible, watery diarrhea, all day long and even waking me up at night. My gastroenterologist had me on budesonide but it didn't work, so he did a colonoscopy just to confirm the diagnosis, which it did, lymphocytic colitis. Now I have been on busdesonide and cholestryamine, 3 pills and 2 packets for 4 weeks, 2 pills and 2 packets for 2 weeks and then 1 pill one packet for 2 weeks. I have seen no improvement. Now he says the next step is to try Humira injections. I'm feeling nervous and scared.
I guess I'm just looking for some support. I think that I need to figure out my diet (which my gastroenterologist hasn't made any suggestions for), but it seems so overwhelming. I have 7 kids, including 2 10-month old babies, and a husband who is in the active duty military and gone quite a lot. I'm 35 years old and feeling like I'm ancient. Looking for some kind words and support and hopefully success stories.
Courtney
Entocort/Cholestyramine and Humira
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Courtney,
Welcome.....we all wish we didn't have to seek out this type of information, but I'm so glad it is here.
If you click on the Potty Person in the upper left hand corner of the forum page it will take you to many areas to browse around in. Here is the Success Stories link https://perskyfarms.com/phpBB2/viewforum.php?f=71
It sounds like your diet plus stress are contributing factors here. If you have read much you all ready know to be sure to take VitD3 and Magnesium Glycinate so the next step will definitely be to address what in your diet you can stand to let go to see if it helps your gut to relax and heal.
Obviously stress is a Biggy here....so just do your best to find a little time for yourself and sleep when you can. Building energy reserves can be hard with LC but it can be done!
Don't forget to eat protein, over cook your veggies, and just be in the moment. You have a lot of beautiful family that requires quite a bit of your time but now it is time for you to etch out pieces of time for yourself
The budesonide protocol was not stretched out long enough and then tapered over a period of time.....and the cholestyramine may not be helpful until the gut heals for a while. That seems to be how it is working for the majority of users here.
So with that said you are half way there being already gluten free....if you can remove Dairy this would be the next BIG protein that may have quite a bit of impact on you at this time....Soy and Egg follow close behind that so be prepared to leave them out if you don't get better results from the dairy....it only takes 6 days without the proteins of these types of foods to know if they are going to need to be removed from the diet in order for the gut to begin to heal.
I am in year three I did not take any medications in the beginning and I can tolerate a small amount of egg baked into something, but I will not ever be able to allow gluten, and my gut feeling about dairy and soy is perhaps I may never with them also.
Keep the questions coming.....
Welcome.....we all wish we didn't have to seek out this type of information, but I'm so glad it is here.
If you click on the Potty Person in the upper left hand corner of the forum page it will take you to many areas to browse around in. Here is the Success Stories link https://perskyfarms.com/phpBB2/viewforum.php?f=71
It sounds like your diet plus stress are contributing factors here. If you have read much you all ready know to be sure to take VitD3 and Magnesium Glycinate so the next step will definitely be to address what in your diet you can stand to let go to see if it helps your gut to relax and heal.
Obviously stress is a Biggy here....so just do your best to find a little time for yourself and sleep when you can. Building energy reserves can be hard with LC but it can be done!
Don't forget to eat protein, over cook your veggies, and just be in the moment. You have a lot of beautiful family that requires quite a bit of your time but now it is time for you to etch out pieces of time for yourself
The budesonide protocol was not stretched out long enough and then tapered over a period of time.....and the cholestyramine may not be helpful until the gut heals for a while. That seems to be how it is working for the majority of users here.
So with that said you are half way there being already gluten free....if you can remove Dairy this would be the next BIG protein that may have quite a bit of impact on you at this time....Soy and Egg follow close behind that so be prepared to leave them out if you don't get better results from the dairy....it only takes 6 days without the proteins of these types of foods to know if they are going to need to be removed from the diet in order for the gut to begin to heal.
I am in year three I did not take any medications in the beginning and I can tolerate a small amount of egg baked into something, but I will not ever be able to allow gluten, and my gut feeling about dairy and soy is perhaps I may never with them also.
Keep the questions coming.....
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
Hi Courtney,
Welcome to the group. I agree with Erica — in order to control LC, most of us have to avoid all dairy products and soy (in addition to gluten), and some have to avoid eggs. Removing dairy and soy from your diet might allow the budesnide to work. You have already done the hardest part if you are already gluten-free.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. I agree with Erica — in order to control LC, most of us have to avoid all dairy products and soy (in addition to gluten), and some have to avoid eggs. Removing dairy and soy from your diet might allow the budesnide to work. You have already done the hardest part if you are already gluten-free.
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.
Thank you so much for the quick responses! It is great to just connect with people who understand what I'm going through.
I have gone through the website and have a couple quick questions...I'll try taking out dairy and soy and eggs and then go from there. I am not taking any supplements, so I have a question about the magnesium gylcinate. I read over the dehydration thread in the newbie section. I think I am way dehydrated. I looked up the drops, lyteshow? Do I still need to take magnesium glycinate if I am using those? It looks like those have magnesium in them.
I have gone through the website and have a couple quick questions...I'll try taking out dairy and soy and eggs and then go from there. I am not taking any supplements, so I have a question about the magnesium gylcinate. I read over the dehydration thread in the newbie section. I think I am way dehydrated. I looked up the drops, lyteshow? Do I still need to take magnesium glycinate if I am using those? It looks like those have magnesium in them.
I looked up that product. Products such as that are certainly better than water for preventing dehydration, but they are almost useless for restoring or preventing a magnesium deficiency such as what most of us have. The disease depletes magnesium, cortocosteroids deplete magnesium, and many other things deplete magnesium (such as coffee). It doesn't specify what type of magnesium it contains. There is a huge difference in the absorptiveness of the various forms of magnesium. Also, too much of some forms are much more likely to cause diarrhea.
It will help to keep you hydrated, but I doubt that it will make much of a dent in your daily magnesium deficit that is accruing because of your LC and budesonide treatment. You are almost surely right about being dehydrated though, so a good electrolytic drink is a very good idea. I would take about 200–300 mg of magnesium glycinate (or use the topical equivalent) to make sure that I was getting at least the RDA.
Tex
It will help to keep you hydrated, but I doubt that it will make much of a dent in your daily magnesium deficit that is accruing because of your LC and budesonide treatment. You are almost surely right about being dehydrated though, so a good electrolytic drink is a very good idea. I would take about 200–300 mg of magnesium glycinate (or use the topical equivalent) to make sure that I was getting at least the RDA.
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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grannykathy
- Adélie Penguin
- Posts: 213
- Joined: Fri Jun 08, 2018 12:21 pm
Hi Courtney, I'm pretty much a newbie here myself so don't have any sage advice for you. Just want to say I feel for you going through this with all those kiddos to care for, but you have definitely come to the right place. These people are not only very knowledgeable but also very caring and compassionate. They are a family and are willing for you to become a part of their family. Take it a day at a time (or maybe an hour at a time) and keep coming back here. You'll be glad you did.