Can anybody help me? I have been living on apple sauce...
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Can anybody help me? I have been living on apple sauce...
I was diagnosed with lymphocytic colitis but meds just go through me in one piece. I can't eat any solid food. My stomach is swolen, and I feel aweful. I can't wear my jeans. Applesauce seems to be the only thing I can eat. Please help me...
Welcome JoJo but I'm really sorry you needed to find us.
There will be more people online later to give you better advice but my guess is that you are taking Asacol - is that right?
Asacol by itself (if it works for you) is fine for maintaining but it sounds like you might need something more powerful to get a handle on this. You understand we are certainly not doctors (at least the great majority of us) and anything we say is just our opinion from our own experiences.
That said, did your doctor give you a choice of either Entocort or Prednisone or even a short time on Prednisone and then Entocort?
Even if you decide to try and control the symptoms with diet, you may need the meds to heal up enough to do that.
I am maintaining on Asacol, but many here are using diet and some are on a maintanance dose of Entocort.
I'm sure you will be hearing from all of them soon.
Hang in there. You can get a handle on it.
Shirley
There will be more people online later to give you better advice but my guess is that you are taking Asacol - is that right?
Asacol by itself (if it works for you) is fine for maintaining but it sounds like you might need something more powerful to get a handle on this. You understand we are certainly not doctors (at least the great majority of us) and anything we say is just our opinion from our own experiences.
That said, did your doctor give you a choice of either Entocort or Prednisone or even a short time on Prednisone and then Entocort?
Even if you decide to try and control the symptoms with diet, you may need the meds to heal up enough to do that.
I am maintaining on Asacol, but many here are using diet and some are on a maintanance dose of Entocort.
I'm sure you will be hearing from all of them soon.
Hang in there. You can get a handle on it.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Jojogurl,
Welcome to the group. I have to get back to work, so about all I can say right now is that I agree with everything that Shirley said, and you definitely need to add some more food items to your diet. I know how you feel though - I once survived on jello, Sprite, and water for a couple of weeks, and I can attest that using a diet like that is a great way to lose weight, but I wouldn't want to have to eat that way for the long term.
If you read old posts here, you will see that many of use are gluten sensitive, and have to cut out all products which contain wheat, rye, and/or barley. Many of us are also casein intolerant, which means that we must also avoid all dairy products. Some have problems with other food items, but most of us can eat plain, (un-injected), meat, potatoes, sweet potatoes, and various rather bland food items, until our gut has time to heal. Most of us have to avoid things such as salads, and certain fruits and vegetables while we are healing, also.
There are three ways to go - a med such as Entocort, (possibly preceded by a short course of Prednisone, as Shirley suggested - a strict diet - or a combination of meds and diet. IOW, some of us use meds, some use diet alone, and some of us have to watch our diets, in addition to taking a med. A treatment program that will work for you is "here" somewhere, you just have to sort it out, and we can certainly help you do that.
I'd better get back to work, but please feel free to ask anything - we will do our best to help. Again, welcome to the board.
Tex
Welcome to the group. I have to get back to work, so about all I can say right now is that I agree with everything that Shirley said, and you definitely need to add some more food items to your diet. I know how you feel though - I once survived on jello, Sprite, and water for a couple of weeks, and I can attest that using a diet like that is a great way to lose weight, but I wouldn't want to have to eat that way for the long term.
If you read old posts here, you will see that many of use are gluten sensitive, and have to cut out all products which contain wheat, rye, and/or barley. Many of us are also casein intolerant, which means that we must also avoid all dairy products. Some have problems with other food items, but most of us can eat plain, (un-injected), meat, potatoes, sweet potatoes, and various rather bland food items, until our gut has time to heal. Most of us have to avoid things such as salads, and certain fruits and vegetables while we are healing, also.
There are three ways to go - a med such as Entocort, (possibly preceded by a short course of Prednisone, as Shirley suggested - a strict diet - or a combination of meds and diet. IOW, some of us use meds, some use diet alone, and some of us have to watch our diets, in addition to taking a med. A treatment program that will work for you is "here" somewhere, you just have to sort it out, and we can certainly help you do that.
I'd better get back to work, but please feel free to ask anything - we will do our best to help. Again, welcome to the board.
Tex
Thank you all for acknowledging me. I feel like the GI hasn't got a clue. It seems that I can't eat any foods at all as they all seem to make me sick. Is it right for my asacol to be coming out whole? I feel like I'm being punished by God. Again, thank you all for replying, and I hope to gain info and maybe some friends who understand out of this. Jojo
Hi JoJo,
Welcome, i went through the same thing. I was sick for 8 months before the doctors could finally correctly diagnose me with UC (i know this is a board for MC, but that was my first diagnosis). If you have contacted your doctor and told him your food situation and they are still clueless i would look into a new GI doc and a second opinion. Asacol will come out in your stool as a shell and look like it is whole but it most likely is not, its just the coating that you are seeing. It does seem that you need something a bit stronger right now to help get this flare into remission, maybe Entocort or Prednisone. Hang in there and you will find great support and information on this board.
Welcome, i went through the same thing. I was sick for 8 months before the doctors could finally correctly diagnose me with UC (i know this is a board for MC, but that was my first diagnosis). If you have contacted your doctor and told him your food situation and they are still clueless i would look into a new GI doc and a second opinion. Asacol will come out in your stool as a shell and look like it is whole but it most likely is not, its just the coating that you are seeing. It does seem that you need something a bit stronger right now to help get this flare into remission, maybe Entocort or Prednisone. Hang in there and you will find great support and information on this board.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Jojo and 
We can all relate to what you are going through, and the rest of the world seems clueless, including many of the docs, unfortunately. I agree with what others have said about trying to find better health care. Where do you live? Perhaps someone here knows of a decent doc in your neck of the woods.
Please eat more than just applesauce! I know it seems as if everything goes right through you (and it DOES when one is first diagnosed and/or is flaring), but it's still important to try to get some nutrition. Plus it is possible to get diarrhea from starvation alone. Some of the more easily tolerated foods include......plain grilled chicken/fish/turkey; sweet potatoes, cooked carrots, green beans, squash; homemade gluten and dairy-free soups, etc. Maybe others will offer some additional ideas.
I'd love to hear more from you about your symptoms, when you were diagnosed, etc. Looking forward to future chats.
Love,
Polly
We can all relate to what you are going through, and the rest of the world seems clueless, including many of the docs, unfortunately. I agree with what others have said about trying to find better health care. Where do you live? Perhaps someone here knows of a decent doc in your neck of the woods.
Please eat more than just applesauce! I know it seems as if everything goes right through you (and it DOES when one is first diagnosed and/or is flaring), but it's still important to try to get some nutrition. Plus it is possible to get diarrhea from starvation alone. Some of the more easily tolerated foods include......plain grilled chicken/fish/turkey; sweet potatoes, cooked carrots, green beans, squash; homemade gluten and dairy-free soups, etc. Maybe others will offer some additional ideas.
I'd love to hear more from you about your symptoms, when you were diagnosed, etc. Looking forward to future chats.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Jojo,
One thing to remember is that until you are able to get the MC under control, you are probably going to have diarrhea, regardless of what you eat. Eating the "right" foods will allow your gut to heal, so that after a while, the D may stop. Not eating anything substantial may temporarily slow down the D, but as Polly pointed out, your health will deteriorate in a hurry if you don't eat enough nutritious foods to sustain your needs. Dehydration is also a big risk, and it can cause diarrhea, also, (to say nothing of other very serious risks).
You are probably correct about your GI doc. Most GI docs practicing today don't know enough about MC to be able to effectively treat it. There are a few of them out there who are learning how to treat it, but they are still few in numbers, and kind of difficult to find, almost everywhere in the world.
Tex
One thing to remember is that until you are able to get the MC under control, you are probably going to have diarrhea, regardless of what you eat. Eating the "right" foods will allow your gut to heal, so that after a while, the D may stop. Not eating anything substantial may temporarily slow down the D, but as Polly pointed out, your health will deteriorate in a hurry if you don't eat enough nutritious foods to sustain your needs. Dehydration is also a big risk, and it can cause diarrhea, also, (to say nothing of other very serious risks).
You are probably correct about your GI doc. Most GI docs practicing today don't know enough about MC to be able to effectively treat it. There are a few of them out there who are learning how to treat it, but they are still few in numbers, and kind of difficult to find, almost everywhere in the world.
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 for your help. I am in Maine and seeing a highly reguarded GI. After a colonoscopy on March 14th he diagnosed me with LC It's the swolen stomach and nausea that I'm having so much trouble with. My stomach feels so bad all the time. It is swolen out and feels like I'm gonna give birth to an alien.(Not Funny)Sleeping is nearly impossible cause I also have a screwed up spine.I was a tummy sleeper now I sleep on my feet. I shall try some fish tonight,(small bites). The diarrhea sucks and I'm afraid to leave home.
Did you go to Maine Medical? How far away from Boston/NH are you? I am in NH and i am going to an oustanding doctor at Dartmouth Hitchcock in Lebanon if you want a referral for a second opinion. Otherwise i also have another doctor in Boston if you would prefer there. Honestly, i would still get a second opinion or maybe contact this doctor and let him know the asacol alone is not working for you and maybe you should try something stronger.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi once again
Aww yeah the symptoms you are having I think we have all been there and it really is horrid, I know the feeling only too well. Please make sure you do drink enough, I did find the sports drinks were very helpful in England we an energy drink called Lucozade, can you get this in the US? If so try it, it helped me on the days I just could not eat x
Aww yeah the symptoms you are having I think we have all been there and it really is horrid, I know the feeling only too well. Please make sure you do drink enough, I did find the sports drinks were very helpful in England we an energy drink called Lucozade, can you get this in the US? If so try it, it helped me on the days I just could not eat x
JoJo,
I agree that the nausea is intolerable. That bothered me as much as the D. I believe I have heard Tex make that statement also.
I was given the generic version of Phenergan which helped. I still try to keep some on had. Don't need it very often but it's a comfort to just have it.
Love, Shirley
I agree that the nausea is intolerable. That bothered me as much as the D. I believe I have heard Tex make that statement also.
I was given the generic version of Phenergan which helped. I still try to keep some on had. Don't need it very often but it's a comfort to just have it.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Jojo,
Shirley is quite correct - I had a lot of trouble with nausea. As bad as all the other symptoms were, it was the nausea that kept me from being able to go to work, some days. I too was a "tummy sleeper, but I had to learn to sleep on my back, I haven't slept worth a hoot since, and that was about 8 or nine years ago. I can sleep on my tummy now, but I have difficulty sleeping in any position - I just can't seem to get my old sleep habits back. <sigh>
Did your doctor test you for celiac disease? If he did, and you tested negative with the blood tests, I would recommend that you have a stool test done at Enterolab, to see if you are gluten sensitive. The lab will mail you a test kit, with instructions, and DHL will pick up the sample for overnight shipment to their lab in Dallas. Unfortunately, most insurance plans will not pay for stool tests, but if you are interested, you can find more information about this at:
https://www.enterolab.com/Home.htm
Tex
Shirley is quite correct - I had a lot of trouble with nausea. As bad as all the other symptoms were, it was the nausea that kept me from being able to go to work, some days. I too was a "tummy sleeper, but I had to learn to sleep on my back, I haven't slept worth a hoot since, and that was about 8 or nine years ago. I can sleep on my tummy now, but I have difficulty sleeping in any position - I just can't seem to get my old sleep habits back. <sigh>
Did your doctor test you for celiac disease? If he did, and you tested negative with the blood tests, I would recommend that you have a stool test done at Enterolab, to see if you are gluten sensitive. The lab will mail you a test kit, with instructions, and DHL will pick up the sample for overnight shipment to their lab in Dallas. Unfortunately, most insurance plans will not pay for stool tests, but if you are interested, you can find more information about this at:
https://www.enterolab.com/Home.htm
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.
JoJo,
I am so sorry you are going through this. You will find lots of support here!
I can only speak for myself but I am also fructose intolerant and I think most here have had trouble in the beginning with fruits. Applesauce is very high in fructose. I didn't realize I was making myself sicker by eating all the fruit and sweet potatoes. It made me nauseated and had lots of gas and gurgling. That stopped when I stopped the fructose. Not the D. Ask your doctor if you can take some immodium or lomotil if you are having relentless D. It can help slow things down until you can get some help (either meds or diet or more testing or maybe all of the above). I am somewhat better now and have been able to add back in a little fruit. No high fructose corn syrup! I am on other meds for the D.
Pat
I am so sorry you are going through this. You will find lots of support here!
I can only speak for myself but I am also fructose intolerant and I think most here have had trouble in the beginning with fruits. Applesauce is very high in fructose. I didn't realize I was making myself sicker by eating all the fruit and sweet potatoes. It made me nauseated and had lots of gas and gurgling. That stopped when I stopped the fructose. Not the D. Ask your doctor if you can take some immodium or lomotil if you are having relentless D. It can help slow things down until you can get some help (either meds or diet or more testing or maybe all of the above). I am somewhat better now and have been able to add back in a little fruit. No high fructose corn syrup! I am on other meds for the D.
Pat