A year ago. Surgery update.

[ThatFLGuy]

A year ago today I was mentally preparing myself for yet another surgery. October 26, 2023, was a bittersweet day for a lot of reasons.

After everything I went through, the choice to undo the ileostomy I was talked into was hard. The few doctors who talked me into an ileostomy in the first place were telling me that it needed to be undone so that other testing could be done.

Before making the decision, my then-girlfriend was telling me that I was crazy for even thinking of having it undone. (She had an ileostomy herself)

But what my surgeon understood that October that no other doctor was that my quality of life was so bad that bad thoughts had entered my mind. I have never been suicidal but had all the earmarks of suicidal ideation.


Now almost a full year since getting the ileostomy undone I truly am back at the health status that caused my doctors to recommend it in the first place.

The big thing now is that I still have not met with a Gastroenterology doctor about all of this.

Last time I seen my main GI doctor was January of 2023 and I am still fighting a system to get seen.

I have even reached out to other centers about all of this and was told that the 6-9 month time frame to get seen is the normal for anywhere within 100 miles of where I live.

Same old same old.

Yet I am still here fighting.

 

[ltapilot]

I'm glad you're still here and still fighting!

I just passed my first anniversary of getting my ileostomy, and I couldn't be happier with it. It's way less painful than my colon ever was, and it takes less time to manage than my colon required to deal with the constant switching between diarrhea and constipation.

I remember how problematic yours was, though, and that's incredibly frustrating that you so can't get any answers!

 

[ThatFLGuy]

I'm glad you're still here and still fighting!

I just passed my first anniversary of getting my ileostomy, and I couldn't be happier with it. It's way less painful than my colon ever was, and it takes less time to manage than my colon required to deal with the constant switching between diarrhea and constipation.

I remember how problematic yours was, though, and that's incredibly frustrating that you so can't get any answers!

I was going to try to go with my parents for Thanksgiving this year but now I can't due to things I have to get worked out here In PA.

Well, even my mother is tired of the hospital giving me the run around about not getting seen.

If things do not change then next year I will be spending more time back in Florida because my parents house is only a hour from one of the best Gastroenterology hospitals in the country.

Which is crazy because that is also what was said about where I have been going before they were taken over.

There are a few things that have gone on that even my mother does not know about yet but if things stay the same through the end of the year then fact will come out.

When I had my last colonoscopy, I still had my ileostomy and they conformed that I had decersion colitis. Well the doctor that did it was actually crying to my mom reviewing my case.

Now I have been waiting over a year just to get the testing done that was one part of why they agreed that the ileostomy had to be reversed.

So I am going to keep fighting and keep building a case.

 

[ltapilot]

Wouldn't the diversion colitis clear up when the ostomy was reversed? I have limited knowledge about it, since all the parts of my digestive tract below my terminal ileum were removed during my initial surgery, but I was under the impression that it would clear up once the diversion was undone.

 

[ThatFLGuy]

Wouldn't the diversion colitis clear up when the ostomy was reversed? I have limited knowledge about it since all the parts of my digestive tract below my terminal ileum were removed during my initial surgery, but I was under the impression that it would clear up once the diversion was undone.

So, the biggest thing with me is that all of my CT scans and even colonoscopy have been clean. But they have never been done from a fasting prep. The doctor that did my last colonoscopy was pissed that I never had a fasting colonoscopy because when she reviewed my past ones, there was inflammation throughout the whole of my colon, but it was only noted as normal.

That doctor feels like I have three/four things going on.

I have diverticula throughout my whole bowel.

Diverticulitis led to my first bowel surgery. That led to pelvic floor dysfunction, which led to pelvic floor instability. But, there is no reason for the instability not to have gotten better unless there is nerve damage (Which my physical therapist felt there is)

Now, some of the medical staff that I have seen feel like I have IBD and IBS. The IBS has never been tested for. They don't/have not considered the diverticula to be inflamed any time I had a scan or colonoscopy done. It is just that I have diverticula throughout my bowel that is noted. The last colonoscopy I had showed a lot of inflammation. Enough that the doctor that did it put me on antibiotics because she was so worried about my getting an infection. She felt that the clean-out removes everything that causes the inflammation so the only way to get a real idea was to undo the ileostomy and then do an upper and lower GI from a fasting standpoint. Repeat other test to see what the heck is going on.

 

[Peter_A]

I was going to try to go with my parents for Thanksgiving this year but now I can't due to things I have to get worked out here In PA.

Well, even my mother is tired of the hospital giving me the run around about not getting seen.

If things do not change then next year I will be spending more time back in Florida because my parents house is only a hour from one of the best Gastroenterology hospitals in the country.

Which is crazy because that is also what was said about where I have been going before they were taken over.

There are a few things that have gone on that even my mother does not know about yet but if things stay the same through the end of the year then fact will come out.

When I had my last colonoscopy, I still had my ileostomy and they conformed that I had decersion colitis. Well the doctor that did it was actually crying to my mom reviewing my case.

Now I have been waiting over a year just to get the testing done that was one part of why they agreed that the ileostomy had to be reversed.

So I am going to keep fighting and keep building a case.

Not meaning to minimize your situation, but what the heck has happened to our medical field?!? It can take weeks, if not months, to get an appointment with any sort of doctor! We just moved to a different location, some two hours away from our previous home, and it is difficult to even find a doctor that'll accept "new" patients! Something seems very wrong here!

 

[ThatFLGuy]

Not meaning to minimize your situation, but what the heck has happened to our medical field?!? It can take weeks, if not months, to get an appointment with any sort of doctor! We just moved to a different location, some two hours away from our previous home, and it is difficult to even find a doctor that'll accept "new" patients! Something seems very wrong here!

Funny, My GI doctor that has not seen me in almost two years is listed as taking new patients on the website.

But, me being a very complex case cannot get seen.

It is crazy. I have to fight to even get seen by a nurse within the GI department.