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After my surgeries, I noticed I could no longer do really deep breathing such as diaphragmatic breathing exercises for singers or wind instrumentalists. (Or maybe that it took more effort and concentration to do it than previously?)

I assumed it was because of cutting through muscles during surgery.

I never feel short of breath and don’t have any trouble with exercise.

Just asking out of curiosity whether anyone else has noticed this.

Last edited by Kushami
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I noticed that I did not like to lie on my stomach for a very long time after surgery because it was uncomfortable.  This went on for years!

I think surgery creates a lot of subconscious trauma and that the body remembers even when the mind doesn't, and this causes us to not want to do various things.  I assume laparoscopic surgery causes less trauma than the old method of cut and splay that I had since the scarring is so minimal.

In my case, it's like there is not enough room for air. Really unpleasant when I have a bad cold and deep cough. A couple of years ago I saw my GP about it and she scheduled me for CT scans of my chest every 6 months because the first scan showed nodules in my lungs. I never got a good explanation about why they might be there. After my last scan 2 months ago, the radiologist recommended that i not continue with the scan as they are not growing and to see my GP again if breathing gets worse. I didn't pursue this as I should have as I have enough going on like just having my gall bladder removed for polyps (weird things growing everywhere) and most likely have PSC. I'll know more about that next week. I will pay more attention if breathing gets worse.

Yeah it could be asthma, a lot of people with Crohns or Colitis have asthma. I take Advair 500/50 twice a day and Montelukast 10mg (pill). AndI take albuterol inhaler when I need it and albuterol nebulizer treatments if I need it. I think those meds will solve all of your problems.

I've had at least 30 abdominal surgeries and almost as many other procedures...I have worked up to deep breathing, very slowly, and over time, post-op since the late 90's.

In the beginning, it blocks, hurts even, and can be frustrating but like everything, it is not a race but a long term job...

I now work out, almost every morning for 15-20 mins, using thick elastic bands for upper body and abdominals, using deep breathing. I also do squats and ballet plié movements while  brushing my teeth (3 minutes with an electric toothbrush). I was able to barely do 10 in 2018. Now? I am up to 90...it is very slow progress. Don't expect miracles. Try doing 3 deep breaths (4-8 seconds each) in through the nose and out through the mouth, hold each breath in the lungs as long as possible (it may only be 1/2 second at first).

I now do it automatically whenever I climb stairs (it actually helps to make it easier) or during any strenuous activity like speed walking.

Like I said, it has taken me years to get here, not months.

I cough. Sometimes those deep breaths hurt and start me coughing for ages...But once it stops, I start again!

Sharon

@Dutchie, yes, “not enough room for air” is how I would describe it too.

I have been thinking about it a bit more, and it’s like drawing back on the bellows of the diaphragm, except the bellows no longer draw down my lungs to the full extent.

I’m lucky in that it isn’t unpleasant for me, just something I’ve noticed. It must have been unpleasant for you with a bad cough. Hope your gall bladder op goes okay.

@skn69, I’m sorry you’ve had to have so many procedures. I think I could improve my breathing too if I followed your example of working on it every day.

At one time I was playing flute in a community orchestra and going to exercise classes that included deep breathing, and I noticed an improvement.

Unfortunately my health has gone downhill in recent years – j-pouch malfunctioning and an obscure condition that causes low blood flow to the brain (bit like POTS).

I hope I can get on top of it all and do things like breathing exercises again. At the moment I am just barely doing the minimum, which I know isn’t good.

@Sara Marie, I’m sorry to hear you can’t lie comfortably on your stomach any more.

One of the reasons I disliked my temporary stomas was that they prevented me from lying on my stomach, and I found it hard to sleep. Or maybe it was that sleeping on my stomach caused leaks or pancaking? It was all so long ago!

Luckily once I had takedown I could sleep on my stomach again.

Last edited by Kushami
@Kushami posted:

@Sara Marie, I’m sorry to hear you can’t lie comfortably on your stomach any more.

One of the reasons I disliked my temporary stomas was that they prevented me from lying on my stomach, and I found it hard to sleep. Or maybe it was that sleeping on my stomach caused leaks or pancaking? It was all so long ago!

Luckily once I had takedown I could sleep on my stomach again.

I actually can lie on my stomach now, it just took me years to be able to do that after the surgery even though it was "technically" healed.  Physically it seemed healed but there is some deeper scaring and I think part of that was the PTSD from the violence of the gutting. It seems that enough of the PTSD has healed for me to be less afraid of letting anyone near that whole area, as I have finally scheduled myself a pouchoscopy almost exactly 20 years post surgery.  It's next week!

There are some things that help with blood flow, like turmeric, pycnogenol (French maritime pine bark extract), and CBD.  The first two thin the blood and the third dilates the blood vessels from what I have read.  They also help with reducing pain & inflammation.  I used to get numb limbs during sleep, and since I've been taking pycnogenol, that doesn't happen anymore.  I wonder if any of these would help your blood get flowing back to your brain?  I also heavily recommend finding a good acupuncturist. Acupuncture is great for blood movement issues in my opinion.  Also, for me, it's the only time I can nap during the day, unless I'm really sick.

@Sara Marie posted:

I actually can lie on my stomach now, it just took me years to be able to do that after the surgery even though it was "technically" healed.  Physically it seemed healed but there is some deeper scaring and I think part of that was the PTSD from the violence of the gutting. It seems that enough of the PTSD has healed for me to be less afraid of letting anyone near that whole area, as I have finally scheduled myself a pouchoscopy almost exactly 20 years post surgery.  It's next week!

There are some things that help with blood flow, like turmeric, pycnogenol (French maritime pine bark extract), and CBD.  The first two thin the blood and the third dilates the blood vessels from what I have read.  They also help with reducing pain & inflammation.  I used to get numb limbs during sleep, and since I've been taking pycnogenol, that doesn't happen anymore.  I wonder if any of these would help your blood get flowing back to your brain?  I also heavily recommend finding a good acupuncturist. Acupuncture is great for blood movement issues in my opinion.  Also, for me, it's the only time I can nap during the day, unless I'm really sick.

Oh yay!!! I am soo excited that you are a pouchoscopy after 20 years!! I remember you telling me recently!

What day is it next week???

@Sara Marie posted:

Not this time. I'm too scared of getting re-traumatized. Maybe after I get used to it. Also my hemorrhoids have been acting up and if they're still unhappy at that point, it would be too painful to be awake.

Yeah I totally understand. After not having it done for 20 years and being traumatized for 20 years, that would make it more scary getting it done awake, totally understandable. And you have hemmrhoids and who knows how they will remove them and they may poke it by mistake and that would definitely hurt you. I would get it done sleeping too lol.

I am so proud of you for taking this step! Some people never get there, I am proud you got there Hopefully I can hear all about it next Thursday! totally excited about it! I hope your pouch is healthy!

Last edited by Former Member

@Sara Marie, I hope your pouchoscopy goes well.

Funnily enough, my “low blood flow to the brain” problem is autoimmune, and it started at the same time as my ulcerative colitis. So it can be treated with some of the same DMARDs. Weird to be taking them again after all these years!

UC was diagnosed rather rapidly. Blood flow problem has taken 25 years. Just about to have definitive testing to prove it.

@Kushami posted:

@Sara Marie, I hope your pouchoscopy goes well.

Funnily enough, my “low blood flow to the brain” problem is autoimmune, and it started at the same time as my ulcerative colitis. So it can be treated with some of the same DMARDs. Weird to be taking them again after all these years!

UC was diagnosed rather rapidly. Blood flow problem has taken 25 years. Just about to have definitive testing to prove it.

Damn! Sorry to hear that I never knew that was a thing

@Kushami posted:

@Sara Marie, I hope your pouchoscopy goes well.

Funnily enough, my “low blood flow to the brain” problem is autoimmune, and it started at the same time as my ulcerative colitis. So it can be treated with some of the same DMARDs. Weird to be taking them again after all these years!

UC was diagnosed rather rapidly. Blood flow problem has taken 25 years. Just about to have definitive testing to prove it.

Thanks!  Me too!

So...the DMARDs work? Any side effects?

@Kushami I never knew this was a thing either. I'm learning a lot lately on how far the tentacles of these bowel diseases reach!

@Sara Marie I had my pouchoscopy today. The intake nurse told me that every doctor seems to have different instructions for prep. I had to take 2 dulcolax tablets then 1 pouch of pico-salax and plenty of water. No enema thank goodness. I don't like them. And am knocked out. Anyway it went well and everything looks great 30 years in. Since he arranged for my gall bladder removal 6 weeks ago because of a fast growing polyp, he said pathology noted that the polyp was one step away from becoming cancer which was his concern. I'm glad you are getting your pouchoscopy! It's so important!! My first doctor never scheduled one for me. My new doctor takes really good thoughtful care of his patients. I am so grateful for him. Good luck!

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