Okay, the first is, I've been on the mushy veg/rice or potatoes diet for maybe three months now. I'm also on entercort (three doses a day for a total of 9mg) and Pepto, alternating days of taking 4 Pepto or 8 Pepto. Meaning, one day I take eight Pepto, then the next four, then the next eight. The reason being, at 8, I get normans, so the next day I lower to 4 Peptos, but then start to backslide ever so slightly.
Anyway, Q one, I am very rigid with my diet, but my brain fog, fatigue, and nausea seem to come and go, not sure what's causing it. Is it normal to have a sort of yo-yo experience? Although I am noticing I'm consistently having more good days than bad. (Yay!) and my bad days don't last as long. Meaning, if the D returns, it seems to only last one day. (I did have a "slip" after a good day, craved blueberries. Yep, ate 'em. Stupid, stupid me. Had pretty explosive D after. But by the next day, I was already beginning to do better. But... I'm assuming fruit is out. At least for now.)
My other Q, I would love to introduce foods back into my diet and wonder how many norman-days in a row I should have before doing that?
My next question, can I do this while on my meds or do I need to wait until I've begun to taper off? Or basically, will my meds mask symptoms, leaving me to start all over when I'm off?
Thanks for any thoughts and advice.
A slew of Qs ;)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jennifer,
It's good to see that you're making progress. Your experiences appear to be mostly normal for the recovery process for MC. The process is often described as "Two steps forward and one step back". Fatigue and brain fog usually take longer to resolve than the other symptoms.
I can't help but wonder why you don't just take 8 Peptos every day (which is the standard treatment regimen). Backsliding every other day is not helpful for healing.
Almost everyone wants to begin adding foods back into their diet way, way too soon. Adding foods while taking anti-inflammatory meds is counterproductive (unless you intend to take those meds forever), because if the meds are working properly, they will mask any reactions to the foods, so any food testing done while taking meds cannot be trusted.
Ideally, before we add foods back into our diet, we should have been in full remission for at least 6 months to a year, and the foods should be introduced one at a time, in small amounts, watching carefully for an adverse response. Sure, many of us can successfully add certain foods back into our diet sooner than that, but during the healing stage, any diet changes carry a high risk of interfering with or delaying healing, and every time that we try a food and it doesn't work, that undoes part of the healing that has occurred, so that setback delays full recovery.
When you add up all the little food tests that most of us will make (too soon in our recovery), it adds up to a lot of extra recovery time. In my own case, after I reached remission, every few weeks or so I just had to try dairy or corn, to see if I had healed enough to tolerate them. It took over a year and a half before I was actually able to tolerate a little corn in my diet. If I had not been so naive as to continue to test foods every few weeks, I might have been able to tolerate them a lot sooner, because my gut would have surely healed sooner.
Recovery from MC is not a quick and easy process. It takes time, patience, and dedication. The healing process is frustrating, aggravating, and depressing, at times, but it beats the alternative, by a wide margin, because no one should have to live with the Draconian symptoms of chronic MC.
Tex
It's good to see that you're making progress. Your experiences appear to be mostly normal for the recovery process for MC. The process is often described as "Two steps forward and one step back". Fatigue and brain fog usually take longer to resolve than the other symptoms.
I can't help but wonder why you don't just take 8 Peptos every day (which is the standard treatment regimen). Backsliding every other day is not helpful for healing.
Almost everyone wants to begin adding foods back into their diet way, way too soon. Adding foods while taking anti-inflammatory meds is counterproductive (unless you intend to take those meds forever), because if the meds are working properly, they will mask any reactions to the foods, so any food testing done while taking meds cannot be trusted.
Ideally, before we add foods back into our diet, we should have been in full remission for at least 6 months to a year, and the foods should be introduced one at a time, in small amounts, watching carefully for an adverse response. Sure, many of us can successfully add certain foods back into our diet sooner than that, but during the healing stage, any diet changes carry a high risk of interfering with or delaying healing, and every time that we try a food and it doesn't work, that undoes part of the healing that has occurred, so that setback delays full recovery.
When you add up all the little food tests that most of us will make (too soon in our recovery), it adds up to a lot of extra recovery time. In my own case, after I reached remission, every few weeks or so I just had to try dairy or corn, to see if I had healed enough to tolerate them. It took over a year and a half before I was actually able to tolerate a little corn in my diet. If I had not been so naive as to continue to test foods every few weeks, I might have been able to tolerate them a lot sooner, because my gut would have surely healed sooner.
Recovery from MC is not a quick and easy process. It takes time, patience, and dedication. The healing process is frustrating, aggravating, and depressing, at times, but it beats the alternative, by a wide margin, because no one should have to live with the Draconian symptoms of chronic MC.
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.
Oh, okay.
The reason I've been alternating the pepto between four and eight is I have hemorrhoids that refuse to heal, and I worry if I were to get constipated, it would make them worse. I guess I'm still trying to figure out how to stay at Normans. But maybe taking 6 consistently would work.
It seems to me this disease requires a delicate balance, and one I haven't found yet, although I think I'm getting closer. ;)
Appreciate the wise advice. Looks like I'll be sticking with potatoes for a while. But hey, at least they are cheap!
The reason I've been alternating the pepto between four and eight is I have hemorrhoids that refuse to heal, and I worry if I were to get constipated, it would make them worse. I guess I'm still trying to figure out how to stay at Normans. But maybe taking 6 consistently would work.
It seems to me this disease requires a delicate balance, and one I haven't found yet, although I think I'm getting closer. ;)
Appreciate the wise advice. Looks like I'll be sticking with potatoes for a while. But hey, at least they are cheap!
Hi jennifer. Tex said what I would have ( but better) about trying new foods now. You still are taking a lot of medication. I didn't even know that one could do the full protocol for both drugs at the same time. Are you sure you need both of them?
Just keep thinking that this diet is helping you heal.
I do have to say that having normans every day is a tall order. I still don't have them every day , but as long as I am only going once a day, what comes out doesn't matter that much to me ( unless it's watery). Of course it's all a personal thing. I wanted to be off those drugs in a reasonable amount of time, so I gave up some "solidness" to do it.
Keep up the good work. Happy New Year!
leah
Just keep thinking that this diet is helping you heal.
I do have to say that having normans every day is a tall order. I still don't have them every day , but as long as I am only going once a day, what comes out doesn't matter that much to me ( unless it's watery). Of course it's all a personal thing. I wanted to be off those drugs in a reasonable amount of time, so I gave up some "solidness" to do it.
Keep up the good work. Happy New Year!
leah
Well I'm so guilty about adding foods in too quickly. Thanks, Tex, for the reminder and that when we do it should be in small amounts. I added chocolate/sugar and raw veggies (onion and bellpepper) back into my diet temporarily and they were in no means a small amount. I'm so ashamed! Apparently my reaction to them is not bad enough to keep me away (yes, I'm a naughty girl) but after reading this post, it has woken me up. Definitely don't want to delay further healing or have to start all over again.
I'm actually glad I'm pretty much off the Pepto as I can tell what I react to now. I remember back in June when I was eating gluten everyday and having no reactions as I was taking Imodium at the time. It's amazing how these meds can mask the symptoms so well.
Jennifer, you seem to be reacting to foods even while on all those meds. Like with the blueberries. That could be a good thing as you'll know what additional food items you need to stay away from for now. While on Pepto I could have eaten anything I wanted including gluten and would not have had a reaction.
Hang in there. This patience thing can be tough! It's a new Year....let's be strong! Glad to hear you seem to be doing better though. Hope you have many more good days in a row! I've had so many good days that I ended up slipping up a little....so watch out!
Take care,
Terri
I'm actually glad I'm pretty much off the Pepto as I can tell what I react to now. I remember back in June when I was eating gluten everyday and having no reactions as I was taking Imodium at the time. It's amazing how these meds can mask the symptoms so well.
Jennifer, you seem to be reacting to foods even while on all those meds. Like with the blueberries. That could be a good thing as you'll know what additional food items you need to stay away from for now. While on Pepto I could have eaten anything I wanted including gluten and would not have had a reaction.
Hang in there. This patience thing can be tough! It's a new Year....let's be strong! Glad to hear you seem to be doing better though. Hope you have many more good days in a row! I've had so many good days that I ended up slipping up a little....so watch out!
Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Tiras, I agree, and there are many times I've wondered if the meds aren't working. Not sure what to do if that is the case, but just the Pepto or just the entercort don't work. Combined they seem to, as long as I am careful regarding what I eat. Maybe there's something else going on? Which honestly, I've wondered that many times as well. Meaning that lc is the symptom and the cause is something else entirely that the doctors just haven't figured out yet. Or maybe I have other stuff going on and I'm lumping it all as lc.
Jon, I haven't really figured out a correlation yet. The nausea seems to be ever-present, and I'm not sure if brain fog is the appropriate term, but I've often likened it to having a hang-over, though I don't drink. I also tend to frequently feel like I'm on a merry-go-round. I suppose that's vertigo, and perhaps not connected with the lc.
I am wondering if maybe I've overdone it with the Pepto as I've been taking large doses (only once or twice over 8 a day) since maybe 10/30. Perhaps that is causing my nausea and weird feelings in my head. Or maybe I'm just a tad off my rocker. ;) But as I've only had normans for maybe four days, with Pepto and entercort, I'm very hesitant to make any changes. I did see a naturalpath on the 31st, but honestly, found her to be more concerned about selling me her products than understanding lc. I see a new GI on the 15th.
Jon, I haven't really figured out a correlation yet. The nausea seems to be ever-present, and I'm not sure if brain fog is the appropriate term, but I've often likened it to having a hang-over, though I don't drink. I also tend to frequently feel like I'm on a merry-go-round. I suppose that's vertigo, and perhaps not connected with the lc.
I am wondering if maybe I've overdone it with the Pepto as I've been taking large doses (only once or twice over 8 a day) since maybe 10/30. Perhaps that is causing my nausea and weird feelings in my head. Or maybe I'm just a tad off my rocker. ;) But as I've only had normans for maybe four days, with Pepto and entercort, I'm very hesitant to make any changes. I did see a naturalpath on the 31st, but honestly, found her to be more concerned about selling me her products than understanding lc. I see a new GI on the 15th.
Oh Jennifer, please be careful with the Pepto! You have taken it for 2 months now? Two months is the protocol but I did 3 as I chose to wean slowly off them for the last 4 weeks. I had some nausea with it but didn't know if it was something in my diet or something in the Pepto. Beginning to think it was something in the Pepto as all nausea has gone away. You could be reacting from the meds....we all react differently to them. My doctor was pretty stern about me getting off them...I suppose so I wouldn't develop a toxicity. However, I think a few doses a week for a long period of time would be okay and some people on here do that I believe.
But I'm glad to hear you've found the right combination that works best for you. Most meds do give me some vertigo but luckily Pepto did not.
I'm like you in thinking "is there something else going on?" It's not like my doctor was totally thorough with my tests. I've never had a CT scan for instance and barium X-rays that would pick up on something that the scopes wouldn't.
Good luck with your new GI doctor. I need to find a new one myself!
Terri
But I'm glad to hear you've found the right combination that works best for you. Most meds do give me some vertigo but luckily Pepto did not.
I'm like you in thinking "is there something else going on?" It's not like my doctor was totally thorough with my tests. I've never had a CT scan for instance and barium X-rays that would pick up on something that the scopes wouldn't.
Good luck with your new GI doctor. I need to find a new one myself!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Thanks, Terri! I actually scheduled an apt with an eye doctor today hoping maybe, just maybe my vertigo and nausea is maybe related to vision. A long shot, perhaps, but as I'm sure you know having experienced the vertigo and nausea yourself, it is pretty unpleasant to deal with.
Good luck with finding a new GI! Hopefully one who understands LC and actually takes the time to listen, research, and is committed to helping you.
Good luck with finding a new GI! Hopefully one who understands LC and actually takes the time to listen, research, and is committed to helping you.
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MaggieRedwings
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Hi Jennifer,
Just a thought since I had the nausea and vertigo (the vertigo especially bad). For me it was a side effect of the Entecort and I know not everyone has side effects but unfortunately, I did. I did everything from the eye doctor to the neurologist for it and they determined it was the medicine.
Love, Maggie
Just a thought since I had the nausea and vertigo (the vertigo especially bad). For me it was a side effect of the Entecort and I know not everyone has side effects but unfortunately, I did. I did everything from the eye doctor to the neurologist for it and they determined it was the medicine.
Love, Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
Maggie, what issues did you see the eye doc for? And how did they decide it was the entocort?
Jennifer, I struggle with fatigue, brain fog, and the merry go round issues. I'm curious since I've been on 3mg/day for a very long time and thought with such a low dose the side effects wouldn't be as severe.
Jennifer, I struggle with fatigue, brain fog, and the merry go round issues. I'm curious since I've been on 3mg/day for a very long time and thought with such a low dose the side effects wouldn't be as severe.