HELP - Need advice - XD and Migraine came to visit yesterday
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Thanks Sara,
It all seems pretty overwhelming to me in my first year of education & fact finding. I feel like I have had to change everything. I don't talk much to friends about colitis because they can't grip the reality of this disease. I am just barely coming to grips with it myself. At least now I have a diagnosis and a label for what I have. That was quite a journey in itself. I'm glad to hear from you that this strict regiment of diet will help heal this flare up. I had seven months of relief and now this, my second flare up in one year.
PS:I'd like to upload a pic of myself but can't find the instructions on how to do so. Where would it say how to do this?
Thanks,
Cory
It all seems pretty overwhelming to me in my first year of education & fact finding. I feel like I have had to change everything. I don't talk much to friends about colitis because they can't grip the reality of this disease. I am just barely coming to grips with it myself. At least now I have a diagnosis and a label for what I have. That was quite a journey in itself. I'm glad to hear from you that this strict regiment of diet will help heal this flare up. I had seven months of relief and now this, my second flare up in one year.
PS:I'd like to upload a pic of myself but can't find the instructions on how to do so. Where would it say how to do this?
Thanks,
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
- alclarkson
- Adélie Penguin
- Posts: 54
- Joined: Sat May 28, 2011 5:03 pm
- Location: Missouri
I get terrible migraines as well. Most of mine are hypoglycemia related. If I don't eat when, well actually, before I'm hungry I will get an awful migraine and get nauseas. I take imitrex and promethazine. Imitrex is an absolute godsend. If I didn't have it I would spend a lot more days crying like a baby, curled up in the fetal position, feeling like I'm gonna lose my lunch in a darkroom some where. I've recently started taking depakote which is a mood stabilizer/anti-seizure medication that's also used to prevent migraines. I'm not a big fan of taking a ton of meds, this makes 3 plus 2 vitamins, so it's not too bad. I'll keep ya updated as to if the depakote helps, although I know most PPL are more geared toward diet changing techniques...... I'm still a little stubborn. I have noticed some issues with milk though. What's my best bet for a milk alternative?
Diarrhea, nausea, abd. pain 3/31/11. Confirmed gallstone/sludge 4/15/11. Confirmed Lymphocytic Colitis 5/6/11 via colonoscopy. Started Pepto 5/21/11 & stopped 6/21/11. Stopped Cymbalta 6/9/11- D stopped temporarily. 7-19-11- lap chole
milk substitute
Hi alclarkson,
Thanks for the information that hypoglycemia is your headache cause. I am not eating well as I am always hungry and trying to figure out what I can eat. But I can at least figure out to have lots of small, snacks and safe things to ingest frequently and see if this wards off headaches. I don't know a good milk substitute to recommend you as I am just starting the no gluten diet for now. I may add 'no dairy' later once I get this gluten part down. I've read on here about a lot of people using almond milk.
Thanks for the information that hypoglycemia is your headache cause. I am not eating well as I am always hungry and trying to figure out what I can eat. But I can at least figure out to have lots of small, snacks and safe things to ingest frequently and see if this wards off headaches. I don't know a good milk substitute to recommend you as I am just starting the no gluten diet for now. I may add 'no dairy' later once I get this gluten part down. I've read on here about a lot of people using almond milk.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Corey, I totally sympathize with the overwhelm. It sounds like you're doing everything you can to educate yourself and will soon be reaping the rewards of feeling better. Each of us is different, but we really do benefit by sharing what has worked as we work toward healing. I feel as though finding this forum saved me months (maybe years) of struggling in the dark. It's not that much fun reading labels (that's why I don't buy a lot of GF products - I don't tolerate dairy or eggs, and I'm not sure which "other" flours are better for me than others, and I'd mostly just skip the whole thing and eat a banana, lol). It takes some time, but you'll develop new routines to replace your old ones. We have several breakfasts we rotate, and usually we cook dinner and have leftovers for lunch... I have a couple of grabbable snacks for days where I'm going to be away from my own fridge for a long time. (Better put a couple more in my purse - I used up a couple of those last week.)
Feel better,
Sara
p.s. if you edit your profile, you will see where you can choose an avatar... there's a link to your profile up at the top, near the big red letters about your message box. I wound up needing help to make it happen - good luck, and if you can't get it to fly, Tex is The Man!
Feel better,
Sara
p.s. if you edit your profile, you will see where you can choose an avatar... there's a link to your profile up at the top, near the big red letters about your message box. I wound up needing help to make it happen - good luck, and if you can't get it to fly, Tex is The Man!
quick snacks
thanks sara,
Bananas are easy, I can do that. I happen to like them.
I hope some day to be good enough at this stuff to actually give something back - like you guys do.
I'll try and post a pic and if not Tex will be my 'go to' man. I really am lucky. This colitis has not stop me from swimming, and painting, I just need to keep a banana and a water bottle handy. Cory
Bananas are easy, I can do that. I happen to like them.
I hope some day to be good enough at this stuff to actually give something back - like you guys do.
I'll try and post a pic and if not Tex will be my 'go to' man. I really am lucky. This colitis has not stop me from swimming, and painting, I just need to keep a banana and a water bottle handy. Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Cory,
You can upload an avatar in your profile, down in the section devoted to avatars, near the bottom of the profile page. Avatars have to meet the size specifications listed there, or the system may not accept them. If you have problems with it, or get don't want to fiddle with resizing your image file, just e-mail the image file to me, and I'll be happy to create an avatar, and upload it for you. You can e-mail me by clicking on the e-mail link at the bottom of any of my posts.
EDIT: Oops, I see that a Sara has already posted this information, but anyway, if you have any problems with it, just attach the image file to an e-mail and send it to me, and I'll be happy to set it up.
Andrea,
Silk Almond Milk is the safest almond milk on the market, (and it tastes great, too). Some of us use hempmilk with good results, also, but it seems to cause a little bloating for some of us. After using it for a while, I actually liked the flavor of hempmilk better than cow's milk.
Several members here make their own rice milk, and almond milk, and like it better than the commercial versions.
Tex
You can upload an avatar in your profile, down in the section devoted to avatars, near the bottom of the profile page. Avatars have to meet the size specifications listed there, or the system may not accept them. If you have problems with it, or get don't want to fiddle with resizing your image file, just e-mail the image file to me, and I'll be happy to create an avatar, and upload it for you. You can e-mail me by clicking on the e-mail link at the bottom of any of my posts.
EDIT: Oops, I see that a Sara has already posted this information, but anyway, if you have any problems with it, just attach the image file to an e-mail and send it to me, and I'll be happy to set it up.
Andrea,
Silk Almond Milk is the safest almond milk on the market, (and it tastes great, too). Some of us use hempmilk with good results, also, but it seems to cause a little bloating for some of us. After using it for a while, I actually liked the flavor of hempmilk better than cow's milk.
Several members here make their own rice milk, and almond milk, and like it better than the commercial versions.
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.
Sharaine,
One other thought that occurs to me is that travel in general can cause changes in GI habits. Long before my ME diagnosis I noticed that travel tended to slow down my "normal" bathroom habits. I remember friends and family also reporting that there was nothing like a good vacation to bring on either D or C!
Travel/vacation typically means some change in diet and routine which probably results in the change in bathroom habits that non MC people may experience. You compound this with pre-existing GI issues and you've pretty much got the "double whammy."
I was on vacation two weeks ago feeling just fine in the morning and feeling deathly ill that night. This with being very careful about my diet and not introducing anything new. Nausea, cramping, bloating, vomiting, diarrhea, etc. for three days. A trip to the ER due to severe dehydration on day four. I don't think it was diet in my case, I'm actually suspicious it was from spending too much time in the sun which caused my mast cells to fire off. The symptoms came on very fast and interestingly were accompanied by a huge hive on my face at the time of onset. Not that the hive is conclusive about it being a mast cell event, but it does make me quite suspicious.
I think travel means needing to be very careful, knowing that we are already out of our normal routine. Whether it means staying out of the sun and/or avoiding potential problem foods, we have to make the choices that will (hopefully) allow us to stay healthy while traveling. I'm a sun lover, but I never want to spend another vacation as I did this recent one. If that means no more sun exposure, then so be it. I learned to adjust when I gave up so many of my favorite foods and I'll adjust to this as well.
It's is frustrating Sharaine and I empathize. Here's hoping we both can have healthy travels again in the near future!
Hope you are feeling better very soon,
Julie
One other thought that occurs to me is that travel in general can cause changes in GI habits. Long before my ME diagnosis I noticed that travel tended to slow down my "normal" bathroom habits. I remember friends and family also reporting that there was nothing like a good vacation to bring on either D or C!
Travel/vacation typically means some change in diet and routine which probably results in the change in bathroom habits that non MC people may experience. You compound this with pre-existing GI issues and you've pretty much got the "double whammy."
I was on vacation two weeks ago feeling just fine in the morning and feeling deathly ill that night. This with being very careful about my diet and not introducing anything new. Nausea, cramping, bloating, vomiting, diarrhea, etc. for three days. A trip to the ER due to severe dehydration on day four. I don't think it was diet in my case, I'm actually suspicious it was from spending too much time in the sun which caused my mast cells to fire off. The symptoms came on very fast and interestingly were accompanied by a huge hive on my face at the time of onset. Not that the hive is conclusive about it being a mast cell event, but it does make me quite suspicious.
I think travel means needing to be very careful, knowing that we are already out of our normal routine. Whether it means staying out of the sun and/or avoiding potential problem foods, we have to make the choices that will (hopefully) allow us to stay healthy while traveling. I'm a sun lover, but I never want to spend another vacation as I did this recent one. If that means no more sun exposure, then so be it. I learned to adjust when I gave up so many of my favorite foods and I'll adjust to this as well.
It's is frustrating Sharaine and I empathize. Here's hoping we both can have healthy travels again in the near future!
Hope you are feeling better very soon,
Julie
- alclarkson
- Adélie Penguin
- Posts: 54
- Joined: Sat May 28, 2011 5:03 pm
- Location: Missouri
Thanks Tex. I'll have to grab some of that at the store & also search for that rice milk recipe on the boards. I love eating rice, milk, butter (tiny amt) and some sugar. If it tastes anything like that I would be in heaven!
Diarrhea, nausea, abd. pain 3/31/11. Confirmed gallstone/sludge 4/15/11. Confirmed Lymphocytic Colitis 5/6/11 via colonoscopy. Started Pepto 5/21/11 & stopped 6/21/11. Stopped Cymbalta 6/9/11- D stopped temporarily. 7-19-11- lap chole
Thank you all for your suggestions and insight. I would be so lost without you. As Sara said in one of her posts, this sight helps everyone and for people like me who was only diagnosed 5 weeks ago, I'm eons ahead of where I would have been sans the board.
I made chicken stock and brown rice last night. It all stayed down. I haven't had a Norman or any other visitor since Monday. I'm drinking Gatorade and eating blandly. At this rate I should be good for the conference on Friday and Saturday.
My headache is almost gone today, thankfully. You can be sure I won't be partaking in any wine, glazed anything, etc., for the rest of the week!
All of your comments mean a lot to me. Thank you Sara, Tex, Gloria, Denise, and others whose names I am forgetting.
Sharaine
I made chicken stock and brown rice last night. It all stayed down. I haven't had a Norman or any other visitor since Monday. I'm drinking Gatorade and eating blandly. At this rate I should be good for the conference on Friday and Saturday.
My headache is almost gone today, thankfully. You can be sure I won't be partaking in any wine, glazed anything, etc., for the rest of the week!
All of your comments mean a lot to me. Thank you Sara, Tex, Gloria, Denise, and others whose names I am forgetting.
Sharaine
Glad to hear your headache is almost gone, Sharaine.
If you plan to bring some travelin' food for the conference, you'll find great tips here. On my recent trip, I had breakfast in my room, and had snacks on hand in case lunch or dinner left me with poor options. If you take your meals at the conference, having a banana or a jar of almond butter or some rice snaps (label-reading is key for those), or a Larabar can really help. (Those are just some ideas I've tried, and not all may agree with you.) It's easier to say no to something you're not absolutely sure of if you're not starving, or know you have a backup mini-meal on hand.
Last night at a buffet, I had a small second helping of steak and potato chips for dessert. Someone at the table said, "that's dessert?" And I just said YUM! Too many potato chips don't work for me, but a few come in very handy.
Hope you keep feeling better, and enjoy the conference,
Sara
If you plan to bring some travelin' food for the conference, you'll find great tips here. On my recent trip, I had breakfast in my room, and had snacks on hand in case lunch or dinner left me with poor options. If you take your meals at the conference, having a banana or a jar of almond butter or some rice snaps (label-reading is key for those), or a Larabar can really help. (Those are just some ideas I've tried, and not all may agree with you.) It's easier to say no to something you're not absolutely sure of if you're not starving, or know you have a backup mini-meal on hand.
Last night at a buffet, I had a small second helping of steak and potato chips for dessert. Someone at the table said, "that's dessert?" And I just said YUM! Too many potato chips don't work for me, but a few come in very handy.
Hope you keep feeling better, and enjoy the conference,
Sara