Diverticulitis and Muscular Dystrophy

@dbwhitted Hello and welcome to Mayo Connect. I'm happy that you joined our online patient support network. This is a great place to find support and share health experiences with others. I also have had multiple bouts of diverticulitis and also a mild form of Parkinson's. In spite of over 9 flare-ups of diverticulitis I have not considered surgery and work with a soft diet as much as possible. (Parkinson's patients also have a hard time with anesthesia.) While I recover from a flare-up I change to a diet primarily liquid (Ensure, jello, etc.) and then add in soft foods (scrambled eggs, baked/mashed potatoes, cooked salmon, etc.) I keep fresh fruits and veggies to a minimum at all times. Once I begin to eat fresh veggies, I roast them in the oven with olive oil until the veggies are tender. I usually have onions, asparagus, tomatoes, and whatever else may be in my refrigerator. I always stay away from the roughage of broccoli and cauliflower. However, you can best tell what is safest for your own digestive system. by trial end error (with as few errors as possible). Best wishes to you.
Also by God's grace~

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I'd like to add my welcome, @dbwhitted, and thank you for sharing some of the issues that you face. As @hopeful33250 mentioned, you have come to the right place to find support.
Although we don't have anyone who has both Muscular Dystrophy and Diverticulitis, I will do my best to connect you with a few members who have one or the other.
I'd like to introduce you to @gailfaith, @jmbjar, and @nithiyadasarath who have discussed MD. In the diverticulitis group, I'd like to introduce you to @retrebotic, @disfraz1, @allegro, @michellr, @aigimw, @lindainarizona, @wesbig, @user_cha5e73f6, @akogut, and @peterhamilton. I am confident that they will provide some insight.
According to Mayo Clinic, limited mobility in patients with MD can cause digestive issues; you can read more about it here:
http://mayocl.in/1btdmyi

@dbwhitted, what is your biggest challenge living with MD and diverticulitis? What has helped you the most to manage this?

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@gailfaith here. I have both Myotonic Dystrophy type 2 as well as diverticulosis with occasional diverticulitis. The DM as they seem to want to call it, is now my major issue. I used to have occasional flare-ups of the diverticulitis, but haven't it for years now. Probably when I was around age 35 to 50, I had probably at least one attack a year. Never had any surgery for it. What they recommended at that time was not to eat nuts, popcorn, etc. but I don't think I paid too much attention to that and just ate everything. Earlier this year I had some mild lower left quadrant abdominal pain that lasted for about a week or so, Since it wasn't going away, I finally went to the ER. I was sure it was another attack of the diverticulitis. Much to my surprise it was a kidney stone! Everyone says that passing a kidney stone is maybe worse than having a baby, but my pain was just a dull ache. It was not in my back where everyone seems to complain about. So it looks like my vacation from diverticulitis continues. My DM is now my major problem. I have been in PT weekly since I was Dx with DM at Mayo in Dec of 2013. Fortunately I have a great therapist and we have a great relationship. He is my motivation to work hard in PT. One of the problems I have with that though is that Medicare will only cover so many visits per year.. Each year what it costs me seems to differ. Medicare is only happy when you get better, but that will never happen with DM. As I was told by every doctor I've talked to is that I can get worse but never better. So I tell my doctors that have to keep writing for PT, that my goal is to stay our of a wheelchair. So far so good. I live in a retirement community now (age 80) and I do a LOT of walking around the campus. I did learn the hard way that using a walker sets me back in my ability to walk and of course that is not recoverable physically! I may look weird, but I use two canes and I tie a 4 inch measuring wheel to my left cane and let it drag behind me when I do my "measuring" walks: That seems to be very actuate! I have it upside down so it counts up not down and since it drags on a corner of the counter housing, I have duct tape on that corner to protect it. I try to walk everyday except the days I have PT, or when it is too windy, or raining. Since I started to measure my walks, I have now walked 17 miles since August of this year. I walk a "long" walk (about 1/2 mile) twice a week and shorter walks all the other days and no two long walks two days in a row. My experience with both Dx is that there seems to be no connection between the two issues. Though at one time I was overweight, I now maintain a weight that is within the high end of the BMI healthy range. That probably helps both issues!

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@dbwhitted Hello and welcome to Mayo Connect. I'm happy that you joined our online patient support network. This is a great place to find support and share health experiences with others. I also have had multiple bouts of diverticulitis and also a mild form of Parkinson's. In spite of over 9 flare-ups of diverticulitis I have not considered surgery and work with a soft diet as much as possible. (Parkinson's patients also have a hard time with anesthesia.) While I recover from a flare-up I change to a diet primarily liquid (Ensure, jello, etc.) and then add in soft foods (scrambled eggs, baked/mashed potatoes, cooked salmon, etc.) I keep fresh fruits and veggies to a minimum at all times. Once I begin to eat fresh veggies, I roast them in the oven with olive oil until the veggies are tender. I usually have onions, asparagus, tomatoes, and whatever else may be in my refrigerator. I always stay away from the roughage of broccoli and cauliflower. However, you can best tell what is safest for your own digestive system. by trial end error (with as few errors as possible). Best wishes to you.
Also by God's grace~

Jump to this post

@dbwhitted Hello and welcome to Mayo Connect. I'm happy that you joined our online patient support network. This is a great place to find support and share health experiences with others. I also have had multiple bouts of diverticulitis and also a mild form of Parkinson's. In spite of over 9 flare-ups of diverticulitis I have not considered surgery and work with a soft diet as much as possible. (Parkinson's patients also have a hard time with anesthesia.) While I recover from a flare-up I change to a diet primarily liquid (Ensure, jello, etc.) and then add in soft foods (scrambled eggs, baked/mashed potatoes, cooked salmon, etc.) I keep fresh fruits and veggies to a minimum at all times. Once I begin to eat fresh veggies, I roast them in the oven with olive oil until the veggies are tender. I usually have onions, asparagus, tomatoes, and whatever else may be in my refrigerator. I always stay away from the roughage of broccoli and cauliflower. However, you can best tell what is safest for your own digestive system. by trial end error (with as few errors as possible). Best wishes to you.
Also by God's grace~

Jump to this post

@gailfaith here. I have both Myotonic Dystrophy type 2 as well as diverticulosis with occasional diverticulitis. The DM as they seem to want to call it, is now my major issue. I used to have occasional flare-ups of the diverticulitis, but haven't it for years now. Probably when I was around age 35 to 50, I had probably at least one attack a year. Never had any surgery for it. What they recommended at that time was not to eat nuts, popcorn, etc. but I don't think I paid too much attention to that and just ate everything. Earlier this year I had some mild lower left quadrant abdominal pain that lasted for about a week or so, Since it wasn't going away, I finally went to the ER. I was sure it was another attack of the diverticulitis. Much to my surprise it was a kidney stone! Everyone says that passing a kidney stone is maybe worse than having a baby, but my pain was just a dull ache. It was not in my back where everyone seems to complain about. So it looks like my vacation from diverticulitis continues. My DM is now my major problem. I have been in PT weekly since I was Dx with DM at Mayo in Dec of 2013. Fortunately I have a great therapist and we have a great relationship. He is my motivation to work hard in PT. One of the problems I have with that though is that Medicare will only cover so many visits per year.. Each year what it costs me seems to differ. Medicare is only happy when you get better, but that will never happen with DM. As I was told by every doctor I've talked to is that I can get worse but never better. So I tell my doctors that have to keep writing for PT, that my goal is to stay our of a wheelchair. So far so good. I live in a retirement community now (age 80) and I do a LOT of walking around the campus. I did learn the hard way that using a walker sets me back in my ability to walk and of course that is not recoverable physically! I may look weird, but I use two canes and I tie a 4 inch measuring wheel to my left cane and let it drag behind me when I do my "measuring" walks: That seems to be very actuate! I have it upside down so it counts up not down and since it drags on a corner of the counter housing, I have duct tape on that corner to protect it. I try to walk everyday except the days I have PT, or when it is too windy, or raining. Since I started to measure my walks, I have now walked 17 miles since August of this year. I walk a "long" walk (about 1/2 mile) twice a week and shorter walks all the other days and no two long walks two days in a row. My experience with both Dx is that there seems to be no connection between the two issues. Though at one time I was overweight, I now maintain a weight that is within the high end of the BMI healthy range. That probably helps both issues!

Jump to this post

@gailfaith here. I have both Myotonic Dystrophy type 2 as well as diverticulosis with occasional diverticulitis. The DM as they seem to want to call it, is now my major issue. I used to have occasional flare-ups of the diverticulitis, but haven't it for years now. Probably when I was around age 35 to 50, I had probably at least one attack a year. Never had any surgery for it. What they recommended at that time was not to eat nuts, popcorn, etc. but I don't think I paid too much attention to that and just ate everything. Earlier this year I had some mild lower left quadrant abdominal pain that lasted for about a week or so, Since it wasn't going away, I finally went to the ER. I was sure it was another attack of the diverticulitis. Much to my surprise it was a kidney stone! Everyone says that passing a kidney stone is maybe worse than having a baby, but my pain was just a dull ache. It was not in my back where everyone seems to complain about. So it looks like my vacation from diverticulitis continues. My DM is now my major problem. I have been in PT weekly since I was Dx with DM at Mayo in Dec of 2013. Fortunately I have a great therapist and we have a great relationship. He is my motivation to work hard in PT. One of the problems I have with that though is that Medicare will only cover so many visits per year.. Each year what it costs me seems to differ. Medicare is only happy when you get better, but that will never happen with DM. As I was told by every doctor I've talked to is that I can get worse but never better. So I tell my doctors that have to keep writing for PT, that my goal is to stay our of a wheelchair. So far so good. I live in a retirement community now (age 80) and I do a LOT of walking around the campus. I did learn the hard way that using a walker sets me back in my ability to walk and of course that is not recoverable physically! I may look weird, but I use two canes and I tie a 4 inch measuring wheel to my left cane and let it drag behind me when I do my "measuring" walks: That seems to be very actuate! I have it upside down so it counts up not down and since it drags on a corner of the counter housing, I have duct tape on that corner to protect it. I try to walk everyday except the days I have PT, or when it is too windy, or raining. Since I started to measure my walks, I have now walked 17 miles since August of this year. I walk a "long" walk (about 1/2 mile) twice a week and shorter walks all the other days and no two long walks two days in a row. My experience with both Dx is that there seems to be no connection between the two issues. Though at one time I was overweight, I now maintain a weight that is within the high end of the BMI healthy range. That probably helps both issues!

Jump to this post