So, I'm over a year into this disease now and have remained faithfully gluten free, dairy free, soy free, and for the most part, egg free (I can eat them in baked goods). I have many more options than when I started with my chicken, rice, and banana that I ate for about 6 weeks or so. I can leave the house without worry and feel really good most days. I have been able to travel again.
However, I keep seeing many of you post about your BM's and mine are never solid. It's definitely not watery diarrhea, but it's far from solid. I have to allow myself at least 2 hours before I can leave the house in the morning because I'll usually go 2-3 times before I leave. Then I'm done and good for the rest of the day.
I don't feel like I have any inflammation. I don't hurt. But now I'm wondering if it's something I'm taking? Something I'm eating? Or is it even worth worrying about if I'm doing ok?
Remission, I think?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Remission, I think?
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jari
in my opinion - remission is defined by each individual...
I have always thought that there is too much focus on 'perfect BM's' as a benchmark of remission - that is just my personal opinion
if you have a eating and lifestyle routine that makes you happy, minimal symptoms and enjoying life - they are the important benchmarks..
in my opinion - remission is defined by each individual...
I have always thought that there is too much focus on 'perfect BM's' as a benchmark of remission - that is just my personal opinion
if you have a eating and lifestyle routine that makes you happy, minimal symptoms and enjoying life - they are the important benchmarks..
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Jari! You have discribed exactly what my question at this time is. I keep wondering what "my normal" is. I have been feeling mostly good after morning 3-4 very loose bm s then I'm good for the day. I have just ordered more Vit D, Vit B complex, magnesium, and l-glut products that everyone has been talking about. I thought maybe I needed better quality stuff, but ?????. I remember Erica talking about not having Normal visits after a year also.
I hope you are okay in spite of the questions. This is all so very trying. I think we should both listen to Gabes' words.... Too much focus on perfect.
Laura
I hope you are okay in spite of the questions. This is all so very trying. I think we should both listen to Gabes' words.... Too much focus on perfect.
Laura
Hi, Jari,
In my opinion, what's important is that we can function and do the things we want or need to do (other than eat our trigger foods!). And enjoy our lives and not feel chained to the bathroom.
I've been free of gluten, dairy, soy, and legumes for five and a half years. Like you, I also have to give myself at least 2 hours before leaving the house in the morning. That's just part of the routine. Sometimes I have to get up really early to have those 2 hours, and that's just part of my life now. My BMs aren't consistent--sometimes they are nice "normans", more often they are smaller and thinner. But the urgency that used to be there isn't there, and I don't have watery diarrhea.
I don't use the term remission, because in my mind that implies that I wouldn't have to think about what I eat. I prefer to say that I control my MC with a strict diet. It's always going to be there, and I'm going to have to be careful, but as long as I am, I can go about my life. Some things I can't do--last year my brother and sister made a trip to Asia, to the small mountain village where we grew up. I didn't go, because I knew that I wouldn't be able to control my diet there without offending people who were offering me their best. But within reason, life is normal for me.
If I were you, I wouldn't stress about perfect normans. If you can go about your life, making concessions like the 2 hours you need in the morning, it sounds like you're doing well.
Love,
Martha
In my opinion, what's important is that we can function and do the things we want or need to do (other than eat our trigger foods!). And enjoy our lives and not feel chained to the bathroom.
I've been free of gluten, dairy, soy, and legumes for five and a half years. Like you, I also have to give myself at least 2 hours before leaving the house in the morning. That's just part of the routine. Sometimes I have to get up really early to have those 2 hours, and that's just part of my life now. My BMs aren't consistent--sometimes they are nice "normans", more often they are smaller and thinner. But the urgency that used to be there isn't there, and I don't have watery diarrhea.
I don't use the term remission, because in my mind that implies that I wouldn't have to think about what I eat. I prefer to say that I control my MC with a strict diet. It's always going to be there, and I'm going to have to be careful, but as long as I am, I can go about my life. Some things I can't do--last year my brother and sister made a trip to Asia, to the small mountain village where we grew up. I didn't go, because I knew that I wouldn't be able to control my diet there without offending people who were offering me their best. But within reason, life is normal for me.
If I were you, I wouldn't stress about perfect normans. If you can go about your life, making concessions like the 2 hours you need in the morning, it sounds like you're doing well.
Love,
Martha
Martha
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twirlitgirl
- Adélie Penguin
- Posts: 181
- Joined: Thu Aug 21, 2014 5:46 am
- Location: Canada
Hi there,
I agree with everyone here about it being individual for each one of us, feeling great and living how you want to live is what matters. I really don't know if I am in remission but I do know that I am always watching what I eat, keep my stress down as much as possible and avoid as much toxins as I can in my control, what I can't control, I try to not think about.
I said my Good byes to a dear friend this week, only 43yrs old who passed away , from a rare blood disorder which she was not able to recover from, and it made me very sad and then I looked at my life and what I have to do to control symptoms , absolutely can handle all it all, putting it in perspective, I am alive, living and eating and controlling this disease with choices I make, it is pretty awesome to get to do that. I am truly thankful and grateful for the gifts of knowledge from everyone here to continue on this journey and live life with zest and joy. many hugs to you all.
I agree with everyone here about it being individual for each one of us, feeling great and living how you want to live is what matters. I really don't know if I am in remission but I do know that I am always watching what I eat, keep my stress down as much as possible and avoid as much toxins as I can in my control, what I can't control, I try to not think about.
I said my Good byes to a dear friend this week, only 43yrs old who passed away , from a rare blood disorder which she was not able to recover from, and it made me very sad and then I looked at my life and what I have to do to control symptoms , absolutely can handle all it all, putting it in perspective, I am alive, living and eating and controlling this disease with choices I make, it is pretty awesome to get to do that. I am truly thankful and grateful for the gifts of knowledge from everyone here to continue on this journey and live life with zest and joy. many hugs to you all.
diagnosed with LC by biopsy
in May 2013 , supplements B complex, Vit C ,Vit D3 Zinc, with a multivitamin, and magnesium to round out the pack.
in May 2013 , supplements B complex, Vit C ,Vit D3 Zinc, with a multivitamin, and magnesium to round out the pack.
Jari, good question! I think maybe remission is more good days than bad.
This is no relation to the subject, but I've noticed that I can tolerate milk chocolate (dairy wasn't on my enterolab results) and it forms my BM pretty good. 2 small squares a night seems to do it, unless it's a reflux day.
This is no relation to the subject, but I've noticed that I can tolerate milk chocolate (dairy wasn't on my enterolab results) and it forms my BM pretty good. 2 small squares a night seems to do it, unless it's a reflux day.
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
I agree with all of you. I have even nicknamed my rear end as Area 51 because you never know what is there! I have days like Martha, where I allow those 2 hours in the am to get ready for the day. I am mindful of my energy level and keeping stress down. I am also religious about Magnesium Vit D and B complex. I am on meds that I have to take and it is what it is. I am mindful of living in a house with 3 others who eat gluten. So it is the new normal. So Jari enjoy!!
Janie
Janie, you made my evening too! LOL.....
Jari, I don't imagine I will ever see a norman like I did Pre-MC...so with that said no matter how hard I work at it....I will constantly waver between bristol 4,5,6,7 always. With this new cholestyramine gig I waver 5 and 6 and they are pencil or rabbit droppings...geesh. I'll take it...because I do not have gut pain and when I do I know something has made its way into my gut without my direct ingestion of it. So with that said....I think you are doing superb and it's ok to not be so worried about if we are normal or not now. We are as normal as it gets at this time HUGS.
Erica
Jari, I don't imagine I will ever see a norman like I did Pre-MC...so with that said no matter how hard I work at it....I will constantly waver between bristol 4,5,6,7 always. With this new cholestyramine gig I waver 5 and 6 and they are pencil or rabbit droppings...geesh. I'll take it...because I do not have gut pain and when I do I know something has made its way into my gut without my direct ingestion of it. So with that said....I think you are doing superb and it's ok to not be so worried about if we are normal or not now. We are as normal as it gets at this time HUGS.
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
I am happy to hear that you are doing well, Jari. It's been two years of a very strict diet for me. I had BMs that were pretty much Normans for quite a while. But a trip this summer changed it even though I was super careful. I have had weird BMs, churning, and what I call a popcorn machine in my belly (popping sounds and movements). I am trying to get back to where I was earlier this year. I just know that the slightest difference in my diet will make Nessie (the Loch Ness monster aka MC) reappear. Trying out raspberries or having a home-baked goodie with a bit of sugar in it or some GF DF SF chocolate with a bit of sugar in it will make the bacteria in my small intestine (SIBO) have a party for days, sometimes weeks. But overall I feel SO much better than before I received everyone's wonderful advice on here. My condolences, Twirlitgirl! I lost several friends to cancer the last few years, it's so sad. So when I feel down because of MC, I tell myself that I am very blessed to be alive and still able to enjoy life. Yes, it's a different life, and I can't do everything I used to do, but I can still lead a fulfilled life.
Also, thank you Jari for the excellent travel/lunch bag recommendation. I bought it last week and used it on my way to Maine to drop off one of my daughters at college (700 miles one way). It was large enough to take enough food for the trip and keep it nice and cool. It will also work really well for my next trip to visit family in Switzerland. Whenever I go there to visit my parents it takes at least 18 hours door to door, longer with flight delays. Awesome recommendation!
Love to all of you,
Patricia
Also, thank you Jari for the excellent travel/lunch bag recommendation. I bought it last week and used it on my way to Maine to drop off one of my daughters at college (700 miles one way). It was large enough to take enough food for the trip and keep it nice and cool. It will also work really well for my next trip to visit family in Switzerland. Whenever I go there to visit my parents it takes at least 18 hours door to door, longer with flight delays. Awesome recommendation!
Love to all of you,
Patricia