Hi All,
The question about how long it takes to recover from MC comes up very frequently on this discussion board. And it's never possible to offer a one-size-fits-all answer, because we all have different degrees of inflammation, and different amounts of intestinal damage, and some of us respond to treatment much faster than others. Age is also a factor, because kids heal much faster than adults, and the older we are, the slower we usually heal. Nevertheless, let's see if we can compose a survey that might offer some meaningful insight into this question.
Of course one of the problems with a survey of this type is that most of the members here who are able to get their life back typically move on and rarely (or never) return. That fact of life almost always leads to a situation where most of the survey responses are from members who are currently active on the board, and of course most of them are still in the healing process and therefore much more prone to answer a poll differently than someone who has been been in remission for several years.
Early on, just getting rid of the urgent, watery diarrhea may seem like heaven. But those who have been in remission for a couple of years or more usually recognize that the final symptoms (such as fatigue and brain fog) take much longer to resolve, and it is at that point that they feel that they have their life back.
Please only respond to this poll if you feel that you actually (for all practical purposes) have your life back. If you still have some time to go, this poll will still be here whenever you finally reach your goal. So how long did it it take to get your life back?
Tex
How Long Did It Take For You To Get Your Life Back?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How Long Did It Take For You To Get Your Life Back?
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 Leah,
That's a tough question that we discussed in this thread:
A question for Tex re a new poll
Obviously the first question is, "Do I have my life back?" If not, then the poll doesn't apply. But if the answer is, "Yes", then the next question is, "At what point did I realize that I had my life back?"
The point is, we are all so very different, and we all have different situations and expectations. IMO, that means that each of us has to decide for ourselves, based on our own lifestyles, first of all whether we have our life back, and if we do, then when did we feel that we had our life back. As with so many issues associated with MC, the rules may be different for each of us, so we have to make these judgments based on how we see our own situation, rather than a fixed set of rules.
Tex
That's a tough question that we discussed in this thread:
A question for Tex re a new poll
Obviously the first question is, "Do I have my life back?" If not, then the poll doesn't apply. But if the answer is, "Yes", then the next question is, "At what point did I realize that I had my life back?"
The point is, we are all so very different, and we all have different situations and expectations. IMO, that means that each of us has to decide for ourselves, based on our own lifestyles, first of all whether we have our life back, and if we do, then when did we feel that we had our life back. As with so many issues associated with MC, the rules may be different for each of us, so we have to make these judgments based on how we see our own situation, rather than a fixed set of rules.
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.
I would like to qualify my one year vote. It may have been a bit longer than that before energy levels improved but my brain fog and D had improved pretty significantly within a year. Nearly five years later I am feeling pretty well though weaker than when I started out. The only D I continue to have is an immediate reaction at occasional restaurants (like within 15-20 minutes of eating). All in all, pretty manageable at this point. Deb
To me, getting my life back would be the ability to do most of the things I did prior to the MC diagnosis.
After 2 1/2 years I don't plan where the restrooms are everytime I leave my house. I can attend functions , but I don't eat out at all & that's very stifling socially. Just the planning and preparation to go out can be difficult.
I'm not traveling, and that's rough on me. That's all due to my restrictive diet, at this point.
So, I guess I can't say I have my life back yet....but I don't have to run to restroom in every store I go in anymore, or have any brain fog, and my fatigue is nothing like it was, I eat potato 2x weekly and a medium sized salad with avacado daily, histamines in foods don't bother me anymore, and I can take some supplements again!
If I did vote above it would be for 3 years.
After 2 1/2 years I don't plan where the restrooms are everytime I leave my house. I can attend functions , but I don't eat out at all & that's very stifling socially. Just the planning and preparation to go out can be difficult.
I'm not traveling, and that's rough on me. That's all due to my restrictive diet, at this point.
So, I guess I can't say I have my life back yet....but I don't have to run to restroom in every store I go in anymore, or have any brain fog, and my fatigue is nothing like it was, I eat potato 2x weekly and a medium sized salad with avacado daily, histamines in foods don't bother me anymore, and I can take some supplements again!
If I did vote above it would be for 3 years.
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
It took me almost two years. I've been at this since June 2013, and I was thinking the other day how NORMAN I've been for a while, and how it seems normal, I feel normal, not sluggish, no pain, no reflux, gas, etc...
I had a flare that lasted about a week in September 2014 after I ate some barbeque (normally a safe food, but I'm guessing there was gluten in the rub?). I took entocort for about a week. After that, a short flare of reflux a few months ago....
Anyway, my life is back and I am not as strict with my diet these days but pretty much avoid or highly moderate the items I'm allergic to (listed under my name).
The exception is anything glutenous which I would not consume regardless. I don't think anyone should eat it.
Also I've experimented with eggs, yogurt - can't have those things. I can't eat chicken or rice either. Tuna seems OK now and then, but I usually skip it. Milk doesn't interest me. I can eat some cheese on a taco once in a while, but I am not going to push it. Raw veg/fruit I have no problem with anymore, and I can eat salad whenever I like.
All of that said, I was VERY strict for nearly a year or more: very limited fiber/veg/ no dairy, eggs, chicken, tuna etc as listed to the left.
Cheers.
I had a flare that lasted about a week in September 2014 after I ate some barbeque (normally a safe food, but I'm guessing there was gluten in the rub?). I took entocort for about a week. After that, a short flare of reflux a few months ago....
Anyway, my life is back and I am not as strict with my diet these days but pretty much avoid or highly moderate the items I'm allergic to (listed under my name).
The exception is anything glutenous which I would not consume regardless. I don't think anyone should eat it.
Also I've experimented with eggs, yogurt - can't have those things. I can't eat chicken or rice either. Tuna seems OK now and then, but I usually skip it. Milk doesn't interest me. I can eat some cheese on a taco once in a while, but I am not going to push it. Raw veg/fruit I have no problem with anymore, and I can eat salad whenever I like.
All of that said, I was VERY strict for nearly a year or more: very limited fiber/veg/ no dairy, eggs, chicken, tuna etc as listed to the left.
Cheers.
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
It took 2 years of Entocort to have enough confidence to stop taking it. I definitely felt better while I was taking a minimal dose of Entocort. For me, having celiac disease and all of the other food restrictions, this is not my old life, it's a new life. I will never have my old life back but I'm content with the progress I've made. The added autoimmune issues aren't pleasant and I honestly think that when MC was triggered, celiac and Sjogrens were triggered as well.
I am not sick with WD or D, nausea or gas from Hell. My diet is doable and the longer I stick with it, the less I mind the restrictions. So, it's not my old life but it is a life that I'm content with.
Sheila W
I am not sick with WD or D, nausea or gas from Hell. My diet is doable and the longer I stick with it, the less I mind the restrictions. So, it's not my old life but it is a life that I'm content with.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
I'm with Linda. It was closer to 2 1/2 years and at that point I could start to take day trips or an overnight trip out of town without becoming sick. The colonoscopy in August 2014 showed that my microscopic colitis is in remission. My diagnosis was in August 2011.
In a monster step of getting my life back, we moved 4 hours away and are now residents of Overland Park, Ks (a suburb of Kansas City) on June 9th. My husband has taken a position with the Kansas City Kansas Public Schools as a school psych, and I've am retiring from the special ed cooperative (because if I do it now they will continue to pay my health insurance until I'm on Medicare) and will make a career change. I'll be able to easily get to my family and friends in southeast Kansas, and in terms of career options, there are many. I'll be able to get to my daughter's performances and to her upcoming CD release parties. This kind of move would have been unthinkable 3-4 years ago. It's not that I feel fabulous every day but I'm now able to raise the bar and aim for a better quality of life. And I stick religiously to my diet and avoid gluten and soy.
In a monster step of getting my life back, we moved 4 hours away and are now residents of Overland Park, Ks (a suburb of Kansas City) on June 9th. My husband has taken a position with the Kansas City Kansas Public Schools as a school psych, and I've am retiring from the special ed cooperative (because if I do it now they will continue to pay my health insurance until I'm on Medicare) and will make a career change. I'll be able to easily get to my family and friends in southeast Kansas, and in terms of career options, there are many. I'll be able to get to my daughter's performances and to her upcoming CD release parties. This kind of move would have been unthinkable 3-4 years ago. It's not that I feel fabulous every day but I'm now able to raise the bar and aim for a better quality of life. And I stick religiously to my diet and avoid gluten and soy.
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
I am two years post-diagnosis and with a VERY careful diet, my bowl movements areq quite stable. I learned that I am impacted by the slightest amout of gluten. It took me a long time to understand that even small amounts of "contamination" cause problems for me. My enery level is clearly below par but has improved considerably. My evening slumps have recently improved a lot. I am not only careful with food, I am also careful about how and when I use my energy. We recently visited the grandkids, a 1,000 mile round-trip and worked the day before we left and the day after we got home. Unlike in the past, my husband did much of the prep work. He also does more around the house. If he didn't I would need to let go of something else.
I am now working with an Integrative Medicine Practitioner to see if I can fine-tune things a bit. I added many of the foods not on my list of sensitivities back to my diet but as a slow process. I have not tried raw carrots or raw apples yet. I eat only baby lettuce but I will soon try more common types. After that, I think I've resumed eating most things. Note: I did not add oats to my list but I NEVER eat oats. Their protein is similar to gluten and I am afraid.
I am now working with an Integrative Medicine Practitioner to see if I can fine-tune things a bit. I added many of the foods not on my list of sensitivities back to my diet but as a slow process. I have not tried raw carrots or raw apples yet. I eat only baby lettuce but I will soon try more common types. After that, I think I've resumed eating most things. Note: I did not add oats to my list but I NEVER eat oats. Their protein is similar to gluten and I am afraid.
Life back? Mostly!
I'm 10.5 mos post diagnosis and a good portion of my life is back. I am working part time again, going to the gym 2x week and working with someone who specializes in autoimmune conditions (I had a lot of arthritis and weakness). I can stay awake almost all days, and have very little pain. Brain fog is pretty much gone, but I do have days when I can't concentrate/remember stuff. But that could just be normal, right? It doesn't feel the same. A year ago I was nearly bedridden, having d accidents many days, and was talking to my dr about getting a handicapped placard for my car, but since I couldn't get in or out of it, had decided why bother, so this is tremendous improvement.
I still have d most mornings - like 1 mostly-norman and 1-2 d after, but for the most part I can make it to the bathroom without a near-miss. I'm not waking up in the middle of the night with d anymore! I generally can go about my business the rest of the day without problems. That all alone is HUGE for me. I no longer have to wake up 1.5 hrs early for everything to let my innards settle before I can leave the house. The pain is almost gone! Also my terrible anxiety and depression are both nearly gone.
So my issues are mainly social nowadays. I've become mostly a hermit because it really is exhausting to explain that/why I no longer drink (ahem, I used to drink quite a lot socially so it's a big change), to decline splitting a dessert, to turn down the cookies, the strawberries, the special dip...especially when a friend has gone to some trouble to try to accommodate me - but as you know, it's nearly impossible to do that because there is always SOME added ingredient, or simply the cross contamination issue of preparing food in an unsanitized kitchen (I also have celiac disease). Recently I had a friend become downright aggressive in sending me recipes and choices for a party she was having (not for me, but I was going). Finally I had to be almost rude, explaining that since she is a CAKE BAKER, there is not one space in her kitchen not a single dish or utensil that would be safe for me and I really was FINE and HAPPY bringing my own food. I was frustrated and upset, her feelings were really hurt and it was uncomfortable for both of us. That's a lot of baggage. This is repeated with coworkers, family, etc. It's just exhausting.
I did recently travel for a few days and it was FINE. I took quite a lot of pre-prepared foods - chicken, pork, cooked sweet potato, cooked apples, cooked carrots, and we stayed at a Residence Inn, so had a kitchen, fridge, microwave. The free breakfast worked for me - bananas with peanut butter and honey, and I even managed to eat in a restaurant (plain shredded pork with vinegar and well cooked squash!). It was wonderful because I actually thought I might never be able to travel comfortably again.
Laura
I still have d most mornings - like 1 mostly-norman and 1-2 d after, but for the most part I can make it to the bathroom without a near-miss. I'm not waking up in the middle of the night with d anymore! I generally can go about my business the rest of the day without problems. That all alone is HUGE for me. I no longer have to wake up 1.5 hrs early for everything to let my innards settle before I can leave the house. The pain is almost gone! Also my terrible anxiety and depression are both nearly gone.
So my issues are mainly social nowadays. I've become mostly a hermit because it really is exhausting to explain that/why I no longer drink (ahem, I used to drink quite a lot socially so it's a big change), to decline splitting a dessert, to turn down the cookies, the strawberries, the special dip...especially when a friend has gone to some trouble to try to accommodate me - but as you know, it's nearly impossible to do that because there is always SOME added ingredient, or simply the cross contamination issue of preparing food in an unsanitized kitchen (I also have celiac disease). Recently I had a friend become downright aggressive in sending me recipes and choices for a party she was having (not for me, but I was going). Finally I had to be almost rude, explaining that since she is a CAKE BAKER, there is not one space in her kitchen not a single dish or utensil that would be safe for me and I really was FINE and HAPPY bringing my own food. I was frustrated and upset, her feelings were really hurt and it was uncomfortable for both of us. That's a lot of baggage. This is repeated with coworkers, family, etc. It's just exhausting.
I did recently travel for a few days and it was FINE. I took quite a lot of pre-prepared foods - chicken, pork, cooked sweet potato, cooked apples, cooked carrots, and we stayed at a Residence Inn, so had a kitchen, fridge, microwave. The free breakfast worked for me - bananas with peanut butter and honey, and I even managed to eat in a restaurant (plain shredded pork with vinegar and well cooked squash!). It was wonderful because I actually thought I might never be able to travel comfortably again.
Laura
Let me Google that for you.
I come here occasionally now. I voted under a few months. I will never have my life back the way it was. But my digestive system is normal now. My symptoms weren't a bad as a lot on here, and I only had to remove 2 irritants. I think that is why, after I stopped eating those irritants, I became normal so quickly. While My digestive system is regular, I don't eat anywhere but my house, so I don't socialize as much and I don't take trips. Not only do I not trust restaurants but I don't trust myself.