Guts, why do you hate me. Physical Therapy did not go as planned.

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Well, I did have physical therapy yesterday, but my guts decided against doing anything.

My guts started hurting minutes before I got to the therapy office and I ended up going to the bathroom three times in the 35 minutes I was early. I ended up meeting with my PT but we just talked about everything. Went over from start to now what we have tried as well as when stuff started happing.

We also talked about and endgame (Avengers assemble). She was very supportive of the fact that I did not just tell the check-in ladies that I felt too bad to stay and dip out. I did end up having an accident while there and explained that to her which is why we just talked.

So I have one new stretch to try but if it feels like my pelvic floor is tightening then I have to stop doing it. "There inlines the problem. Some of the abs stretch that I could/should be doing, I cannot because if it tightens my pelvic floor it does the opposite of what we need it to do.

My issue is that one part of my pelvic floor is tight and the part that is the only thing keeping me continent is weak. My PT told me that there is she, nor 50+ other PT's she talked my case with (Only uses my case Number# not my name and stuff) but all the PT's have said that my case is near imposable to treat (That was told in September)

So I asked her if she was in my place what would she do...

She said that she does not like that surgery seems to be the only option. She is going to ask for a review of my case this week coming and this time she has written permission to use my name and stuff. She wants real answers for moving forward from my doctors and she is meeting with them all the first week of November.

So I hope that by the 17th of November I have some more answers as to a way forward.

At this point, the pain is so bad that I just work up from sleeping for the last eight hours.

 

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Sorry your guts do not cooperate. *We* don’t hate you!

 

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@LeeC

Some good did come out of it. My PT got to see how my stomach spasms when my guts are acting like that. The appointment was an hour long and it took 25 minutes for it to stop. So she is very much now in understanding about how bad this is. She was shocked that it lasted that long. She was actually going to get a doctor to come in and check me because there are ones in the same building but I told her that this happens all the time.

So now she is going to talk to my doctors this week coming and if I do not get any messages from them or a call then when I see my PCP I am going to ask for a second opinion from other GI doctors and such.

 

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FLGuy you have a great PT. It is so wonderful to find a person who really cares.

 

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I definitely think surgery and an ostomy bag is likely ahead for you, unfortunately. If that happens, the good thing is you’ll be more likely to have an expedited federal disability case.

 

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I’m glad she got to see your spasms! Sometimes people don’t understand the depth of what we deal with!

 

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Fl Guy, I think your PT is a real gem and definitely a keeper!!! And it seems she has a good idea that the pain you deal with is that 500 pound elephant in the room that isn't going to go away on its own any time soon. So of course you and she and your doctors are going to keep focusing on what you're going to do to get rid of that pain hopefully for once and for all.
And it's really good thinking on your part to say, "If you were in my position what would you do?" That way it sort of puts them on the spot and they have to answer sincerely. And that's what I do when faced with some sort of decision and I need someone's expert opinion.

 

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@snow

I posted before that my colon surgeon only gave me three options that could be done back before I had the botox done in August, 1) keep doing what was doing 2) Try botox 3)Ostomy surgery.

Went with the botox because it was not permanent.

I am looking at an ileostomy and not a colostomy because the colon surgeon feels that my bowel is too narrow and damaged to allow proper function. This also means a very likely open surgery and not laparoscopic so @billliveshere Sadly to pain may be worse after surgery.

Here was the question that my Physical therapist said we need to be answered from all my doctors.

1) What the hell are we going to do about pain 2) If we go through with an Ileostomy then will it stop chronic constipation and remove the need for all the medication I am on (Already know that this is not likely) 3) How much permanent pain is the surgery going to add. 4) How much is the surgery going to change how often I have to see doctors etc. 5)How long is the hospital stay after surgery 6) What is the likelihood of more issues after surgery. Last, How is the surgery going to change my current conditions as far as disability goes? ( It is not going to change my stomach muscles, in fact, it will be worse on them, and the ileostomy is going to affect everything I can eat.

So it is kind of like what my PT said. What is the surgery going to do to change my current situation for the better?

The goal is, no more permanent pain. Only new pain if it is going to be controlled moving foward. No new surgery if it is going to negatively affect my current quality of life. No new surgery if there will not be better care from doctors after. Lastly, no surgery if it is not for quality of life improvement.


I do not see an ileostomy as a quality of life improvement unless it removes pain, spasms, and constipation. So got to check so boxes before I think about that road.

 

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I completely agree - no need for surgery unless it will make things better for you. Have you asked for a referral to a pain clinic to get on some sort of chronic pain longterm treatment? I finally went a month ago and I’m kicking myself for not having gone 10 years ago. There are many options, and they’re not all opioids, fortunately!

 

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@snow

My PT is working on getting that set up because one of the pain management people is a good friend of hers. So if I have not got a call by Tuesday then I have to call them. Under my insurance, I don't need a referral for that so.

My PT is just trying to get me in quicker.

My mom even said the same thing about surgery, like if all it is going to do is guarantee that I am disabled and not fix or improve my quality of life then what is the point. The only thing with that is my current medication is not effective so the only other option is to play around and try different things. In the end, my colon surgeon told me that it was very likely an inevitability that I will need another surgery that will take my bowel out of the equation.