Minor rant

[NEskier]

I know I shouldn't be but I have found myself really annoyed recently of the lack of knowledge of medical types about ostomy patients. Aren't there lots of us around??

I am recovering from open heart surgery, just past three weeks now, and going through some of the transitioning to home videos. So the rant is not so much the videos, because those are definitely general, but to those on the dietary/nutrition side. I was sent home to follow a low-fat, low sodium diet. Yuck. Definitely aggravated by the loss of my sense of taste. DRAT. I'm starting to get some sense of 'savory' but sweet is pretty much still tasting sour or acrid. It is the low salt portion that is aggravating me. I have an ileostomy and dehydration can be a concern. I am not one who dumps salt all over food but a little might be nice. Anyway, the diet is a 'one size fits all' design. My body and chemical reactions are very different from someone with all the original parts! I don't have a large intestine and beyond to process food the same way. And don't get me started on being prescribed extended release medications!! I have the feeling they just sent me home without planning for ME.

And then there are the suggestions for fiber. I eat veggies carefully, but I think of what I can handle vs the suggestions that would have me bound up solid!!

I haven't had the surgical follow up yet but have seen my PCD. We've been together for 25 years so he does have a sense of how I operate. His response was 'you know your body better than they do!'. That helped a lot. I'm still staying lower than I normally would but not obsessing.

Honestly, each day does get better and better. I'm walking more than two miles at a good pace. More than a mile an hour average faster than last week! I just needed to 'rant' at an audience that gets my aggravation. I figure if I'm feeling well enough to have this annoy me, I'm definitely getting better! Thanks, all!

[Mara]

I gave up listening to doctors with whom I disagreed long ago...lol....My cardiologist wants me to take a statin but my family doctor whom I have seen for many years knows my cholesterol et al numbers and has never suggested it....

Sometimes or most times you have to do what you know is the best for you....certainly for dietary issues....and definitely for us old-timers....not necessarily in age but ostomy years....

So glad to hear you are doing well, NEskier - your walking improvement is great!! Keep going!!

[NEskier]

I gave up listening to doctors with whom I disagreed long ago...lol....My cardiologist wants me to take a statin but my family doctor whom I have seen for many years knows my cholesterol et al numbers and has never suggested it....

Sometimes or most times you have to do what you know is the best for you....certainly for dietary issues....and definitely for us old-timers....not necessarily in age but ostomy years....

So glad to hear you are doing well, NEskier - your walking improvement is great!! Keep going!!

Thanks, Mara! I pretty much listen then synthesize what I need vs what is suggested. We tried a statin once. Not pretty with my reaction to the drug. I said I was done. My ratio for cholesterol/LDL is so low my PCD said I'd have to work to have a heart attack. All the work I had done was structural. The rest is just drawing on my (lack of!) inner patience to continue the slow road to my new normal.

[Mara]

NEskier - My ratio is good also which is why, I guess, my primary doesn't suggest a statin. I did finally decide to take one about a month ago - trying to humor my cardiologist - I think I took it for a week or ten days and one morning I woke up feeling quite ill and decided it was the fault of the statin - doubtful....probably, but I stopped taking it....

I'm quite sure my aortic valve replacement had nothing to do with cholesterol or my cardiologist would have said...

[To Dream a Dream]

Your post has made my day! I can just imagine you. Up & around & actually ranting! By the way, you wax eloquent in your frustration. A sure sign of recovery. Good for you!
I, & probably all who read your words resound with an old fashioned, "Here! Here!" Having had a very long association with the medical field, nothing surprises me. Often it seems I am addressing an empty wall. I have blamed the degree of acute specialization that seems to have taken hold of the profession. That keeps each of our providers within their own little world. I don't know about other patients, but I have had in-house referrals to doctors who had never met my PCP.
A personal instance. I had a total colectomy with the complete removal of my rectum & anus in 1977. Yet, I am still reminded by my trusty state-of-the-art computerized chart that I need a colorectal screening. Good luck! It would be almost laughable, if I was not haunted by dread of presenting in some ER unconscious from dehydration.
But then, hope springs eternal. Just look at yourself. Two miles, really! A true testimony for us all.

[Mysticobra]

Just reminds me I need to start walking for exercise.
I do some but need to extend it.
I've become so lazy. I have never liked exercising.
Boring.
I have always had a blue collar physical job. It's where I got paid
to exercise.
Now. I'm reverting to a lazy teenager. Probably my "true self".
We have equipment. But it's so boring.
Walking. I like walking. If it's not over 100 degrees outside.
Richard.
P. S.
Usually way too hot. Especially this past summer. Now that it is cooler.
It's a good time to do it.
Richard.

[NEskier]

Just reminds me I need to start walking for exercise.
I do some but need to extend it.
I've become so lazy. I have never liked exercising.
Boring.
I have always had a blue collar physical job. It's where I got paid
to exercise.
Now. I'm reverting to a lazy teenager. Probably my "true self".
We have equipment. But it's so boring.
Walking. I like walking. If it's not over 100 degrees outside.
Richard.
P. S.
Usually way too hot. Especially this past summer. Now that it is cooler.
It's a good time to do it.
Richard

I can slouch around with the best of them! I am blessed that I have been active and competitive pretty much since the ostomy in 1984. I also teach Pilates as my post-retirement job. Gives me a joy that riding a desk never did!

Yesterday in New England was rainy and miserable. Left me with the spin bike to get my heart moving a little bit. BORING. The ride to nowhere! Richard, I am with you on walking and will wander out in a bit since it's sunny and over 40 degrees. I like walking since I see something new every day, even on the same routes. Different birds, the ocean goes up, down and waves .... all good. Enjoy the walk when you motivate! I'll be thinking of you!

[jstl]

"I am recovering from open heart surgery, just past three weeks now, and going through some of the transitioning to home videos. So the rant is not so much the videos, because those are definitely general, but to those on the dietary/nutrition side. I was sent home to follow a low-fat, low sodium diet. Yuck. Definitely aggravated by the loss of my sense of taste. DRAT. I'm starting to get some sense of 'savory' but sweet is pretty much still tasting sour or acrid. It is the low salt portion that is aggravating me. I have an ileostomy and dehydration can be a concern. I am not one who dumps salt all over food but a little might be nice. Anyway, the diet is a 'one size fits all' design. My body and chemical reactions are very different from someone with all the original parts! I don't have a large intestine and beyond to process food the same way. And don't get me started on being prescribed extended release medications!! I have the feeling they just sent me home without planning for ME."

THIS!! I had asimilar experience. This March I had surprise (because I had no idea I had a heart problem until I couldn't breathe--women have different symptoms, but that's a different post) and was encouraged to go through cardiac rehab. The exercise part was ok (they were exercise physiologists not OTs or PTs and it showed), but teh nutrition part?! Ihave an ileostomy, chronic kidney disease, and as a bonus a week and half after the stents, I got Covid (my favorite honeycrisp apples tasted and smelled like vinegar-kind of cool, if it's not happening to you). Anyway, when I brought up that I would end up in the hospital if I ate the amounts of fiber they suggested, they told me to "just tweak it" to what I needed. But..but..they're the experts, right? I decided a long time ago that I don't want to function as any medical person's "Ostomy 101" but my gosh, the ignorance and apathy are remarkable. I used to play with the idea of starting a thread that had people telling the silly things their doctors (or other medical types) said to them, but I never did. We need to write a handbook --maybe a graphic novel.......Thanks for letting me share in your rant.

[NEskier]

THIS!! I had asimilar experience. This March I had surprise (because I had no idea I had a heart problem until I couldn't breathe--women have different symptoms, but that's a different post) and was encouraged to go through cardiac rehab. The exercise part was ok (they were exercise physiologists not OTs or PTs and it showed), but teh nutrition part?! Ihave an ileostomy, chronic kidney disease, and as a bonus a week and half after the stents, I got Covid (my favorite honeycrisp apples tasted and smelled like vinegar-kind of cool, if it's not happening to you). Anyway, when I brought up that I would end up in the hospital if I ate the amounts of fiber they suggested, they told me to "just tweak it" to what I needed. But..but..they're the experts, right? I decided a long time ago that I don't want to function as any medical person's "Ostomy 101" but my gosh, the ignorance and apathy are remarkable. I used to play with the idea of starting a thread that had people telling the silly things their doctors (or other medical types) said to them, but I never did. We need to write a handbook --maybe a graphic novel.......Thanks for letting me share in your rant.

I suspect we are far from the only ones who have had this experience. On the upside for me, I am six weeks out of surgery in two days and doing well. On another upside, having a surgeon that is sensible and listens! I had my follow up a week ago and mentioned the food issues. The PA (who I love) said the taste issue does happen, usually resolves, and can take a long time. I'm OK with that (and taste is gradually coming back). I suggested to the two of them that the diet wasn't a good one for someone whose digestive system ends at the ileum. Both agreed I know my body better than some one size fits all plan! Whew. The surgeon added that there are no problems with my veins and to do what ever I was doing before. YAY!

Also I can skip cardiac rehab (good thing since every place in my state is weeks out of having space)! I was already walking three miles a day in week three. I also teach Pilates and used to keep up a personal trainer certification so I have a good idea what to do. The hardest part right now is NOT doing too much with my upper body while I'm still healing, which takes ages. Legs I can work harder, around being more tired in general.

I go off two of the drugs in a month. Also YAY! I have some issues with the beta blockers which have always hated me, but I'll wait until my cardiology followup in January. One lesser side effect of Metoprolol is gas and bloating. I made chili one day since I'm trying to get my protein intake up. I had to get up twice in two hours to let the gas out. Thank god I woke up! I always tended to follow a Mediterranean diet anyway and didn't have that issue on calcium blockers which I went on after my last bad experience with beta blockers. The super gassy guts are a new one for me and not one I'm loving. So that will be another discussion.

Geez JSTL you did get nailed with about everything after your heart issues!!! Glad you are doing better now. It is pretty aggravating being treated without a thought of our differences. No problem on joining the rant! All are welcome here!!