Hi all,
A short recap: I had a flare in March and was taking Pepto Bismol (8 a day) and it was helping but I noticed that the ringing in my ears was getting a whole lot worse. The Dr. had me discontinue the Pepto and started me on 1 Budesonide EC a day, which I finished in May. The Dr. wanted me to start a probiotic, VSL #3, but it was $60 per bottle. My dog is sick and needs to be on antibiotics the rest of her life for chronic diarrhea (LOL!!! Like mother, like doggie daughter!!), costing $78 per month, we are on a fixed income so the dog got her meds not me. (P.S. the ringing in the ears never got better)
Tex was right, 1 Budesonide EC a day does not help you achieve remission. Shortly after finishing the Budesonide EC I noticed what have become for me telltale signs that a flare is imminent. In early June, I had to fly to NJ last minute for a funeral. I made the plane trip ok but diarrhea took over. I was supposed to go into NYC to visit with my kids while I was up but was not able to make the trip. I loaded up on Imodium for the flight home, the diarrhea subsided, why I don’t know. But I still had those telltale signs that trouble was still brewing.
In the end of July my husband and I drove up to southern NJ to visit his mother and then we were going to visit more family as well. The 12-hour trip up was fine, I had no problem but the next day the diarrhea started. I had packed lots of Imodium and Budesonide EC left from the last flare. I made an executive decision to take the full dosage of Budesonide EC 9 mg a day, which didn’t help for that trip, and I called the Dr. when I got home. The trip was not good, I had to take a lot of Imodium throughout. After a full night of watery D and taking so much Imodium to plug me up, we drove to northern NJ and took a train and Path into NYC on the hottest day of the year to see my kids. I made it to and from, barely. I got very dehydrated and my husband said I was pale and a little incoherent, he almost took me to the ER. He pushed water into me and I started feeling a little better. I finished the rest of the trip and managed the 12-hour ride home thanks to Imodium.
The Dr. had me continue with 9 mg of Budesonide EC until he sees me on 9-5. I found it necessary to cut back on the 9 mg, alternating with 6 mg for 1 week and this past week just 6 mg a day. It was going ok until last night when I could just tell this morning was not going to be a good one. Diarrhea, but just once first thing this am and I feel washed out. I should add that when I got home from NJ I ordered the VSL #3 from my pharmacy and started taking it. I was able to get my dog’s antibiotics thru my pharmacy for $60 less than getting it from the vet!!
I’ve had MC long enough and I still have not gotten it right food wise. I lost a bit of weight this time. It seems I can’t make any plans, I take 1 day at a time. We do have a long weekend planned in the end of October, I’m nervous about it. Around Thanksgiving we will take another ride up to NJ and I’m nervous about that as well. Maybe I need stronger tranquilizers!!
Just 1 more thing, Entocort EC is gluten free but I couldn’t find that Mylan’s Budesonide EC is as well. Anyone Know?
This is a lengthy post, I apologize. Thanks’ for listening.
Susanne
I’m embarrassed and totally disgusted with myself...........
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
HI Susanne,
Wish there was an easy answer for you, but it sounds like getting back to a basic diet again and fishing out the culprit as to what keeps you in a flare after getting things to calm down with Entocort may be what has to happen.
It is usually something we wouldn't have guessed, and perhaps just the stress of knowing there are plans and leaving and excess exercise that we tend to over do and realize our MC can't deal with anymore is just enough to push our gut over the edge at times.
I know I have to be careful how much I plan and then how much I actually do, and then I have to plan on giving myself a few days after a busy day to let my body cam down on the inside. Plus I have to eat basic, I really hate it, but that is the only way for me to function these days.
I hope you find the right balance to your plans, food and medication so you can enjoy yourself once again.
Erica
Wish there was an easy answer for you, but it sounds like getting back to a basic diet again and fishing out the culprit as to what keeps you in a flare after getting things to calm down with Entocort may be what has to happen.
It is usually something we wouldn't have guessed, and perhaps just the stress of knowing there are plans and leaving and excess exercise that we tend to over do and realize our MC can't deal with anymore is just enough to push our gut over the edge at times.
I know I have to be careful how much I plan and then how much I actually do, and then I have to plan on giving myself a few days after a busy day to let my body cam down on the inside. Plus I have to eat basic, I really hate it, but that is the only way for me to function these days.
I hope you find the right balance to your plans, food and medication so you can enjoy yourself once again.
Erica
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
Why embarrassed and disgusted???? You have no reason to be - this is a learning process for all of us and I'm assuming it's going to take me many more years to really pin down what I can eat and what I can't. Stop beating yourself up, it's certainly not helping your stress level and stress is a trigger (as you well know)!
I'm flying cross-country this Saturday and have been really good about not stressing or doing the "what if's?" but I'm sure that will change by the time I get to the airport. I, too, will be packing Imodium and eating as clean as I can be being at someone else's house and eating out a lot, it might get a little tricky.
Be patient with yourself, and I'm saying that to myself as much as I am to you. :)
Sue
I'm flying cross-country this Saturday and have been really good about not stressing or doing the "what if's?" but I'm sure that will change by the time I get to the airport. I, too, will be packing Imodium and eating as clean as I can be being at someone else's house and eating out a lot, it might get a little tricky.
Be patient with yourself, and I'm saying that to myself as much as I am to you. :)
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
I so agree with Sue on this. There is absolutely no reason to be embarrassed or disgusted by what this disgusting disease offers. We certainly don't have a choice in the matter. It is what it is. Some days are good. Some days are not so good and there's nothing we can do to change that. Just know that down the road (for me 7 years) things can be pretty normal. I obviously don't eat things that trigger me but I am participating pretty fully in life again. Deb
Hi all,
Thank you all for the words of encouragement.
I'm disgusted with myself because after 6 years I just can't get it right. I hope that someday I will. I had a remission that lasted for 1 1/2 yrs. December 2013 to June 2015. I was working a high stress job then and now I'm retired. I just don't get it. Though it's very stressful to be home all day with the hubby, LOL!!!
I'm embarrassed because whenever we meet socially with other couples, my gf, ef, sf and cf diet always comes up. I try to get away with "I have digestive issues" but it never seems to end there. I know that they mean well but I just don't want to explain myself anymore. It's hard to make other people understand what I'm going through when my own husband doesn't understand. He will still ask me to share a piece of cake with him when we've eaten out, really?
When I see my GI dr next week I am going to ask for a referral to see a registered dietician/nutritionist. I need help. I need to find one with the knowledge of MC, I don't know if I'll find one. I'm afraid to eat. I lost so much weight that I don't weigh enough for the passenger seat airbag to sense there is someone in the seat, the airbag is always off!! It happened in 2 different cars. That's scary!! My GI dr referred to this as a nuisance disease. I believe he used that term meaning that nothing really serious usually comes out of it. I'm going to make sure that I tell him that it's more than just a nuisance, it changes your life/lifestyle forever.
I did have a good morning this am, hopefully yesterday was just a fluke.
Sue, have a wonderful and safe trip.
Thanks again,
Susanne
Thank you all for the words of encouragement.
I'm disgusted with myself because after 6 years I just can't get it right. I hope that someday I will. I had a remission that lasted for 1 1/2 yrs. December 2013 to June 2015. I was working a high stress job then and now I'm retired. I just don't get it. Though it's very stressful to be home all day with the hubby, LOL!!!
I'm embarrassed because whenever we meet socially with other couples, my gf, ef, sf and cf diet always comes up. I try to get away with "I have digestive issues" but it never seems to end there. I know that they mean well but I just don't want to explain myself anymore. It's hard to make other people understand what I'm going through when my own husband doesn't understand. He will still ask me to share a piece of cake with him when we've eaten out, really?
When I see my GI dr next week I am going to ask for a referral to see a registered dietician/nutritionist. I need help. I need to find one with the knowledge of MC, I don't know if I'll find one. I'm afraid to eat. I lost so much weight that I don't weigh enough for the passenger seat airbag to sense there is someone in the seat, the airbag is always off!! It happened in 2 different cars. That's scary!! My GI dr referred to this as a nuisance disease. I believe he used that term meaning that nothing really serious usually comes out of it. I'm going to make sure that I tell him that it's more than just a nuisance, it changes your life/lifestyle forever.
I did have a good morning this am, hopefully yesterday was just a fluke.
Sue, have a wonderful and safe trip.
Thanks again,
Susanne
Susanne,
I agree, the stress related to traveling is a big item for most of us. I suspect it's your main trigger.
I'd be surprised if you ever find a dietician/nutritionist who knows anything about dealing with MC.
The reason why your GI doc is so cavalier about this disease is because he does not have it. He believes what he reads in the medical journals.
I hope you can find a way to relax.
Tex
I agree, the stress related to traveling is a big item for most of us. I suspect it's your main trigger.
I'd be surprised if you ever find a dietician/nutritionist who knows anything about dealing with MC.
The reason why your GI doc is so cavalier about this disease is because he does not have it. He believes what he reads in the medical journals.
I hope you can find a way to relax.
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.
Hi, Susanne. I feel your pain with the social issue. I'm not embarrassed, but I no longer enjoy eating out with other couples. Everyone gets silent when I order. It's not like I have two heads or something, for Pete's sake! I think we'd all like to give our GI's a little whap on the forehead when they don't take this disease seriously but I'm grateful to know that they don't know what they're talking about. I feel badly for people who take their advice because they don't know any better. I hope you are able to figure out what is causing your flares.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
Hi all,
Again thank you all for the words of encouragement.
I try not to eat out when I am at home and I find myself alone a lot. My husband will go have lunch with friends and every week there is a motorcycle club dinner, which I opt out of. They go to sports bars, I don't feel the food is safe, and I'm sick of ordering bun less burgers so I stay home. My husband wanted to have friends over for dinner, I told him that I wouldn't feel comfortable cooking for other people because I just don't know what to make that anyone else would enjoy.
I just made my lunches for the week, chicken, well cooked green beans, carrots and potatoes. I freeze in individual containers, it takes a couple of hours to prepare. I have it everyday. A little boring but safe.
Gabs - my Vit D3 is ok, I'm probably a little short on magnesium. I will increase both when I feel stressed out more than usual.
Brandy - I had that happen several times, everyone was almost finished with their meals when mine finally came out right. They were going to wait but I told them to start eating or their meals would get cold. I am going to ask the Dr about cholestyramine when I see him this week.
Tex - I am always stressed out, I won't go into the reasons here. My Dr suggested finding something to do for an hour a day just for myself. I took yoga for a month and loved it. It's just too expensive for me to take right now. There is no programming on my cable stations with Yoga, although my gym has yoga classes 2 x's a week, a little too early for me to get up and out. I'm not disciplined enough to try it at home on my own. I do go to the gym during the week, which for me is pure torture, I'm just not a gym person. BTW - I don't hold out hope of finding a registered dietician/nutritionist that understand MC.
Diana - I will ask at my local Costco what they charge for VSL #3, thanks for mentioning it, I didn't even think of Costco.
Again, thanks so much.
Have a "safe" eating Labor Day weekend.
Thanks,
Susanne
Again thank you all for the words of encouragement.
I try not to eat out when I am at home and I find myself alone a lot. My husband will go have lunch with friends and every week there is a motorcycle club dinner, which I opt out of. They go to sports bars, I don't feel the food is safe, and I'm sick of ordering bun less burgers so I stay home. My husband wanted to have friends over for dinner, I told him that I wouldn't feel comfortable cooking for other people because I just don't know what to make that anyone else would enjoy.
I just made my lunches for the week, chicken, well cooked green beans, carrots and potatoes. I freeze in individual containers, it takes a couple of hours to prepare. I have it everyday. A little boring but safe.
Gabs - my Vit D3 is ok, I'm probably a little short on magnesium. I will increase both when I feel stressed out more than usual.
Brandy - I had that happen several times, everyone was almost finished with their meals when mine finally came out right. They were going to wait but I told them to start eating or their meals would get cold. I am going to ask the Dr about cholestyramine when I see him this week.
Tex - I am always stressed out, I won't go into the reasons here. My Dr suggested finding something to do for an hour a day just for myself. I took yoga for a month and loved it. It's just too expensive for me to take right now. There is no programming on my cable stations with Yoga, although my gym has yoga classes 2 x's a week, a little too early for me to get up and out. I'm not disciplined enough to try it at home on my own. I do go to the gym during the week, which for me is pure torture, I'm just not a gym person. BTW - I don't hold out hope of finding a registered dietician/nutritionist that understand MC.
Diana - I will ask at my local Costco what they charge for VSL #3, thanks for mentioning it, I didn't even think of Costco.
Again, thanks so much.
Have a "safe" eating Labor Day weekend.
Thanks,
Susanne
https://www.youtube.com/watch?time_cont ... ogU4H6LlEk
Yoga nidra on YouTube. This is a meditative yoga...i.e. this is more like meditation.
Yoga nidra on YouTube. This is a meditative yoga...i.e. this is more like meditation.
Suzie, Sometimes you can find free yoga classes around town. If you can do one more of the paid yoga class make a point of asking the instructor the availability of free yoga classes. In my town we have free yoga at the library, the senior center and also at our cancer hospital. The class at the cancer hospital is called a stress relief class as the instructor said no one would show up if they called it yoga. The free classes are as good as the classes at my gym.
How do I want to say this....in yoga circles it is not about making money....it is supposed to be more about sharing and outreach.
How do I want to say this....in yoga circles it is not about making money....it is supposed to be more about sharing and outreach.
Brandy,
Thank you for the link and suggestions with yoga. Someone in my subdivision has yoga periodically in her back yard, weather permitting. I haven't gone yet, it's been too hot & humid here, I don't do well outside in that kind of weather. A couple of towns over a yoga class is offered on Saturdays, in the am, $5 cover charge. I'm going to try it next Saturday.
Thanks again,
Susanne
Thank you for the link and suggestions with yoga. Someone in my subdivision has yoga periodically in her back yard, weather permitting. I haven't gone yet, it's been too hot & humid here, I don't do well outside in that kind of weather. A couple of towns over a yoga class is offered on Saturdays, in the am, $5 cover charge. I'm going to try it next Saturday.
Thanks again,
Susanne