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dbwhitted
@dbwhitted

Posts: 14
Joined: Nov 04, 2016

Muscular Dystrophy & Diverticulitis

Posted by @dbwhitted, Nov 4, 2016

I’m a 48yo male with Limb Girdle Muscular Dystrophy (LGMD), confined to an power wheelchair since 1998, my only physical abilities is twisting my wrists & neck. I have full complete feeling throughout body, I do NOT use any urination aid nor bowel movement aids. Now up until July 2014 I’ve been healthy, except being MD, I’ve never stayed a night at the hospital or even had a pressure sore. In 2014 I began eating many fresh vegetables & salads, eating healthy…I thought!
Well in I began having digestive issues (not always at the same time) like lower abdominal pain & random diarrhea, extreme sweats, & passing out. In September 2014 I awoke with 102 that quickly spiked to 104 temp, ended up in hospital for 5 days with sepsis (unknown origin) & mild diverticulitis pain, but no digestive issues, except those brought on by 5 IV antibiotics!
Then in November 2014 I ate a salad (w/ corn) minutes later ended up with abdominal pain, diarrhea, extreme sweats, & passing out. then to the hospital released to days later, diagnosis diverticulitis.
Then February & August 2015 a colonoscopy procedure was performed both revealed a 2mm benign polyps…Se below for most recent colonoscopy results.
Now 1 month ago, for no known reason BAM a flare up, hospital stay 3 days!
Two weeks ago another colonoscopy revealed 2 very small 2cm benign polyps.

May questions is this, most would say “have surgery, it’ll fix it”, but not so fast! Due to my LGMD it puts me at a higher risk of anesthesia issues & pneumonia issues, both could be seriously life threatening. I’ve been watching extremely careful what I eat, although the doctors are “6 of one 1” & a “1/2 dozen of the other”, it seems the medical industry is divided on the causes. I know that corn, grains, oats, etc effect me, plus I’m looking into natural probiotics through homemade kraut & turmeric golden paste. I had a stomach virus 4 days ago that wiped me out diarrhea & vomiting for two days, today’s my first day eating a soft grilled trout w mashed potatoes & soft carrots, but even before eating it I awoke with tenderness in the diverticulitis region, that increased throughout today, even though I’ve been on mostly liquids for 3 days.

Any advice? Anyone that’s facing or has faced both MD & diverticulitis?

by God’s grace,
DBWhitted

REPLY

@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~

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?

@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!

@hopeful33250

@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

Thank you for your time & 1st hand advice. I generally stay with soft foods 75% of the time,, I love grilled fish w/ tatters!

@kanaazpereira

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?

Jump to this post

@kanaazpereira First thanks for your kind welcome, many introductions, & link, which I’ll read shortly.

As for your questions…
Question #1:
“what is your biggest challenge living with MD and diverticulitis?”
Answer:
I consider my lifestyle fully active, in fact, up til Christmas ’15 I worked 35-40hrs/wk, getting in my wheelchair about 7am where I remained until approx. 8-10pm. Then & now, my biggest challenge drinking plenty of water because it flows right through me, biggest issue is the constant seatbelt pressure across the lower abdomen where the diverticulitis is, plus the natural compaction of the seating position. When the pain comes, the jarring of the lack of wheelchair suspension creates more pain. Then there’s the not being able to quickly get to the toilet when it hits (I can’t use any toilet there must be a lift system).
Question #2
“What has helped you the most to manage this?”
Answer:
Outside of place my trust in God….I’m still looking! Insurance doesn’t allow me to see a dietary physician. I’m looking into homemade kraut w/ its natural biotics, as well as, turmeric. I certainly stay away from fresh vegetables & absolutely no corn!

@gailfaith

@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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@gailfaith
Your story to me is extremely touching, in its own way reminds me of my MD journey!

I’m unfamiliar with Myotonic Dystrophy type 2, but I know that it is a struggle just as mine & any other disease, it has its difficulty that brings its own pain. As stated, I’ve been in a power wheelchair for 18yrs, but I didn’t just give into it, nor have I ever had PT, in fact I never let MD take anything instead I choose to give up certain abilities for another ability that made me stronger.. I was, and still am determined that, “my MD doesn’t define me, I define it” & “MD doesn’t have me, instead I have it”! I applaud your determination & tenacious attitude…Maintain that for it is your strength to not give in.

I continue believing that my diverticulitis will also take a permanent vacation, I praise God for your freedom of diverticulitis & strength over Myotonic Dystrophy type 2.

Question what is “DM” & “Dx”?

@hopeful33250

@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

@hopeful33250
Love the idea of toasting them in the oven with olive oil until the veggies are tender. I love onions, asparagus, tomatoes, and many others…Guess most veggies could be done this way!

@hopeful33250

@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 Yes, I’m sure you will enjoy the roasted veggies with olive oil. The combinations are endless. I usually sprinkle some garlic granules on top of it all. Just wonderful!

@gailfaith

@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

Hello @gailfaith, You have certainly found a lot of creative ways of dealing with y our DM. Thanks for sharing your experiences.

@gailfaith

@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

Hi @dbwhitted, Dx of DX usually stands for diagnosis. I like your comment that your disorder does not define you! Great attitude. Thanks for sharing that with the Mayo Connect Community/

@hopeful33250

@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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Please take me off this list.Thank youD.K.Sachdev

@gailfaith

@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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Hi dbwhitted….Yes, Dx = diagnosis, Sx = symptom, Rx= prescription or” write for something” be it medicine or PT instructions. As far as the DM and MD2, I am a little confused myself. The first time I abbreviated my Myotonic Dystrophy type 2, I shortened it to MyDy2 or something similiar, and someone then referred to it as DM . Now I see it as MD2 which I think is the best abbreviation. My understanding is that myotonic dystrophy is a rarer form of muscular dystrophy.
I can’t help but ask why you never had PT? Did you just get your powered chair when getting around was starting to get difficult? I live in a retirement community and I was watching people with walkers and rollators and their gait appeared to me (I’m not a PT!) like it was pretty good. So I got skids and wheels for a walker but after 6 weeks, I realized my gait was poorer. So I limited my use of it. The first time I went to Mayo I had my service dog and I ended up having people push me in a wheelchair from appt to appt. So when I went back this past spring, I was not planning on using a walker and intended to get pushed around again, as my dog had succumbed to a stroke and I had him put down. But my PT said to take it, so I did. The airlines bent it beyond repair so they paid for another one from the Mayo store. But for whatever reason, probably not to deteriorate, I used the walker all over Mayo this time. When I got back home, I realized my walking again had deteriorated some more so I have NOT used the walker since! I have it in the back seat of my car, just in care. If it wasn’t for how my PT motivates me, I’d probably just “give in” also. We literally have a ball together. And against his wishes, I even bring him snacks and sometimes a lunch. He says I’m going to get him into trouble, but I tell him to tell whoever “they” are that it is part of my therapy. We found out early that we have MUCH in common, everything from our favorite color, to tastes, etc, Even our phone numbers are similar. Mine ends in 8222 an his in 2228. Someday I’m afraid I’m going to get them mixed up! One difference between us he smiles a lot and I don’t. But It is his smile that motivate me. Shortly after I started with him, we both had a bad tooth, and not just something simple. Shortly thereafter I got a cold and he said, “if I get a cold, you’re in trouble”. Frequently he tells me that he wishes all his patients were as motivated as I am, but he gets all the credit for that as far as I’m concerned.
I trust your “user name” of “dbwhitted” does NOT stand for dumb-witted as you sound far from that description! I am glad to hear that your DM does not define you! I too applaud your determination to be the master of your problems. It keeps us thinking, doesn’t it?

@hopeful33250

@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

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@gailfaith

@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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@gailfaith You asked “I can’t help but ask why you never had PT? Did you just get your powered chair when getting around was starting to get difficult?”…You are correct, I forgot that in order to get the power wheelchair I had to take a PT assessment, was suppose to be 2wks but became 1wk when seeing that my wife & I was adapting as the muscle “thief” as it stole strength from me, my wife stepped in to fill that void. In fact they watched her & realized that though she was no nurse & our method was not typical, it was better than what PT 2x week could do. The best PT is knowing that fineline between doing to much, which breaks down muscles quickly! Same goes to not doing enough, which also breaks down muscles quickly! Then maintaining dedication & a positive mind, knowing that “I can do all things through Christ who strengthens me”. Then when I took my first ride in PT to ‘learn’ how to drive the power chair, it was like I was a veteran driver! I jumped in it & took off like Dale Earnhardt Sr.

As for using it too much & relying on it instead of my abilities. As for walking, my calves weakened fast, so did my waist muscles, but my thighs were the strongest. That being said, the thighs could hold me up, but the calves couldn’t keep my feet in front of me or under me, then once my gait / balance would go, my waist couldn’t recover from failing. I did everything to the fullest ability, many times I carried it to far…ex. my last 2-3yrs driving, due to weak calves, I had to pick up my foot off the gas & put it on the brakes to stop! I adapted day by day, week by week, month by month, year by year…like I said MD would not take it from me, I would do it to the fullest ability & then when it was time, I’d just let it go.

My MD has definitely made me stronger, more determined, more appreciative, & more loving!

@dbwhitted It sounds as if you have good knowledge of your condition and that you have adapted well to your loss of abilities. Your attitude is remarkable! You and your wife are quite a team!

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