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Tomorrow I am finally going back for physical therapy after my procedure on 8/6. I am looking to seeing how things are working now that the Botox has done its job for a while. I know how things have been from an accident standpoint but that was to be expected. Now I just need to see it the procedure had its desired effect or not.

My hope it that maybe this will lead to an different solution than an ostomy but I know that it is a long shot.


My deepest fear is not dealing with the pain. That is something that I am prepared to put my foot down about. I cannot function as I am right now and if they tell me that an ostomy is the only option left for me than it better be in a place that is going to remove the ability for my gut pain. That would mean that only a ileostomy would work because my right side hurts all the time and doctors cannot figure out why. I still feel that it is due to an issue with my ileocecal valve but it has not been checked yet by a doctor so.

If no solutions are offered soon by my current Gastroenterologist (GI) then I am going to have to push the issue and even ask for a second opinion.

Here is the big thing. Looking back it is very likely that I should have had an ostomy following my surgery in Florida. That would have allowed for much needed healing. The issue with that is doctors knew two things. First, I had no insurance at the time and second, I would never get back on my feet if that would have been the path taken. The fact is that two doctors were on my case and the one that I was left with did surgery that way it was. Even my current surgeon up here in Pennsylvania feels that I should have had an ostomy for a while but understood why it was not done.

My current Colorectal surgeon feels that there are a few more test that should be done before we decide that a ostomy is only other choice but they are ‘again’ long shots.

His thought is that the section were my surgery was done is not working and that now my entire bowel is not function. This make since because even with all the medication I am on I cannot go a few hours without it for procedures and that is even with fasting.

His other fear is that other systems are beginning to show signs of issues with all of this. I just do not know what more to do because my PCP is not coordinating my care and when my physical therapist pushes the issues it seems like there is a lot of though before anything is talked to me directly about anything.

My goal is to get to see my GI, PCP and other doctors ASAP and hope that they have some answers to help the pain as well as dealing with other issues.
 
HI FlGuy, You mentioned that if your GI doesn't offer any solutions then do "push the issue," as you so aptly put it! But maybe getting a second opinion may also be the thing to do. Given that you live in a rural area and are not really all that close to someplace more urban, like Philadelphia with its huge array of medical facilities, or even Allentown-Bethlehem, that may be easier said than done. But maybe your PT might have ideas on where to get a reliable second opinion.
But needless to say an ostomy can make a big difference in how you feel ultimately and even if a second opinion is not immediately forthcoming, do find out everything you can about an ostomy. Even if that seems to be the best (and only) solution it's good to find out all there is to know about it so you'll go in completely informed, and make sure all the questions you have are answered to your satisfaction. In other words (and to use a phrase often heard in court), without a shadow of a doubt!
I know that all of this pain is really getting "old" for you and the objective is to do something to stop it for once and for all.
And do plan to see all of the principal doctors involved in your care ASAP! Kind of like, "This morning I'm calling Dr. So and So, and this afternoon I'm calling Dr. Such and such."
If they offer some other solution, once again get all of the facts and try to find out how that will turn out in the long run.
I hope your appointment with your PT goes well and that the procedure you had earlier this month has had its desired effect.
 
Good luck. Can feel frustrating when our medical caretakers don't appear to have a sense of determined urgency. Best.
 
I agree with Nocontrol, the lack of urgency by some medical personnel is frustrating to me as well. I need an MRI for a back issue, but can't have one until my non-MRI-Interstim device is replaced with one that is compatible. I need to wait 7 weeks (maybe more) for that to happen. In the meantime, I deal with my back pain the best I can.
 
The other apprehension that I have with all of this is that I am on insurance-based disability. That insurance is only good for two years meaning that in October 2022 everything ends with that. They will in the spring of 2022 be helping set up a disability claim with all the information that they have already. That is why I never got a disability lawyer. If I had gone that way and got turned down then the insurance would not have paid out.

My fear is not that I will not qualify for disability at this point but rather that it will take pushing doctors to definitively say that I am not able to do what I was doing for work before all this started.

I know that I have my Physical therapist on my side but from what I have read disability really wants a single diagnosis and not a whole bunch of symptoms. The current diagnosis I have listed is may or may not qualify.

I think that my Pt and surgeon have enough to say that will be enough to move forward but I will see next month when the next documentation request is finished.

Right now I could not work if I wanted to. I cannot stay standing for more than 30-40 minutes without my back hurting, bowels, bladder spasms hitting and accidents happening. That and the uncontrolled pain is a big nope from PT about going back to anything physical or standing for to long.
 
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