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I am in a very difficult position right now. I had to seek a second opinion from a different doctor because my gastroenterologist is not available to see me until next year. (Her schedule is full until the end of 2024) My care is very complicated and non of my current doctors are willing to make an discussion about what to do next because they want my gastroenterologist to give oversight of my care. Here is the full story. I had my first bowl surgery in Florida in 2019 due to diverticulitis, two abscess and a perforation. Florida surgeon removed 14 inches of my colon and told me I was good to go after eight weeks of recovery. I moved to Pennsylvania and started working in July of 2019. By November I was back in the er. Then in May of 2020 something happened and I couldn’t control my bowels or bladder after a long bout of constipation. After a lot doctors visit it was found that I had pevic floor disfunction and I was sent to physical therapy. Nothing changed after two years and it was recommended that I get an ileostomy. That happened back in April of last year. Since then my stoma has hurt every day. Ostomy team said I had to get use to it. I seeked a second opinion because my gastroenterologist couldn’t/wouldn’t see me. Now my new doctor is saying that there is a bunch of tears that should have been done before my Ostomy. They feel like I should have it reversed and then allow them to do tests before deciding to do something else.
The thing is that I will be going back to having bowel incontinences as well as still have the spasms that I do. This means a lot of medication again. I also will mean taking time to recover before any tests are done.
I am blessed to have a girlfriend that also has an Ostomy so she understands my concerns and fears about everything. I just feel like something has to be done and I am not getting anywhere with my gastroenterologist so I left that hospital for a different one but now I’m kind of stuck back with that hospital because of how far the other one is.
I think it’s worth reversing my Ostomy before doing anything permanent because my output is so thick but that means forcing the hospital to take care of me and get me a gastroenterologist who can see me and understands the complexities of my health.
Yeah life is crazy right now.
What to do?
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Re: What to do?
Sorry I have no ideas at all for your issue but I am just completely shocked that a doctor can't see you for over five months!! You definitely need to find better medical care imo. What about the local ostomy group in your area - maybe someone could recommend you a better doctor....
Best wishes!!
Best wishes!!
Ileostomy due to UC - 50 odd years
Re: What to do?
As with Mara, I have no idea what you are talking about. My experience with GI issues is limited and specific to my situation which seems to be very different from yours.
But you sound as though you have real problems, so I read to my wife what you wrote. My wife is retired from Mayo in Minnesota, not a doctor, but she worked very closely with physicians and surgeons and has a good understanding of how they work. Her comments on what you wrote:
1. He is not telling us the GI doctor’s side of the story.
2. The GI doctor certainly has appointments before the end of 2024. And if 2024 is a typo and you meant 2023, her comment is the same. These folks always have cancellations, and they reserve appointment slots for emergencies and special situations.
3. Were you following the GI docs advice or were you in conflict with her?
4. Did you threaten the GI doc with legal action?
5. Is there a financial problem with your insurance?
These are pointed/uncomfortable comments from my wife, and perhaps don’t fit your situation at all. The problem is, that she has extensive experience and has seen doctors slow play patients or refer them elsewhere. And such behavior on their part isn’t common. And they virtually never take such an action except as a last resort - at least this is the way it is with Mayo physicians.
Aside from this, it sounds as though you have had two surgeries and are now contemplating a third. Once they crack your gut open, each successive surgery becomes more difficult. Were it me I would be very thoughtful before doing a third surgery, lacking a clear path to some sort of resolution. You mention that your current problem is constipation. There are conservative ways of dealing with this. Have you tried them? I take Miralax twice a day, and have done this for years. Miralax works great for me, and it is safe and not habit-forming. I would be in huge trouble with constipation if I didn’t do this. I know that pelvic floor dysfunction can be pretty rough, so maybe what I’m suggesting isn’t an option.
Again, I have no idea what you are dealing with and am just going by your written words. So if what I wrote isn’t helpful, OK.
But you sound as though you have real problems, so I read to my wife what you wrote. My wife is retired from Mayo in Minnesota, not a doctor, but she worked very closely with physicians and surgeons and has a good understanding of how they work. Her comments on what you wrote:
1. He is not telling us the GI doctor’s side of the story.
2. The GI doctor certainly has appointments before the end of 2024. And if 2024 is a typo and you meant 2023, her comment is the same. These folks always have cancellations, and they reserve appointment slots for emergencies and special situations.
3. Were you following the GI docs advice or were you in conflict with her?
4. Did you threaten the GI doc with legal action?
5. Is there a financial problem with your insurance?
These are pointed/uncomfortable comments from my wife, and perhaps don’t fit your situation at all. The problem is, that she has extensive experience and has seen doctors slow play patients or refer them elsewhere. And such behavior on their part isn’t common. And they virtually never take such an action except as a last resort - at least this is the way it is with Mayo physicians.
Aside from this, it sounds as though you have had two surgeries and are now contemplating a third. Once they crack your gut open, each successive surgery becomes more difficult. Were it me I would be very thoughtful before doing a third surgery, lacking a clear path to some sort of resolution. You mention that your current problem is constipation. There are conservative ways of dealing with this. Have you tried them? I take Miralax twice a day, and have done this for years. Miralax works great for me, and it is safe and not habit-forming. I would be in huge trouble with constipation if I didn’t do this. I know that pelvic floor dysfunction can be pretty rough, so maybe what I’m suggesting isn’t an option.
Again, I have no idea what you are dealing with and am just going by your written words. So if what I wrote isn’t helpful, OK.
Re: What to do?
Interesting comments, BillGK. I was particularly struck by what you said about following the doctor's advice or being in conflict. Without going into gory details I have cardiac issues and my cardiologist would like me to take a cholesterol lowering drug but so far I have refused. I don't like to take medicine and I feel that in my case it is not necessary as I believe high cholesterol ran in my family and most of my other related numbers are ok. But my doc still sees me on a regular basis even though we don't agree...
I would assume ThatFLguy does not have an insurance or legal issue....
I would assume ThatFLguy does not have an insurance or legal issue....
Ileostomy due to UC - 50 odd years
Re: What to do?
To each his/her own, lol. Personally, I’ve never understood why people wont take medicines, but that’s just me. We have a very good friend who had a cholesterol condition, would not take a statin drug, tried vitamin C and all of the natural things because, well, they were “natural”. Had a heart attack at their remote cabin north of Duluth MN. It wasn’t severe, and her husband got her in to hospital, and thankfully she is OK, but Mayo now has her taking a fistful of pills every day. Every time I see her I say “Donna, are you taking your pills?!!”. She smiles and nods her head in a vertical direction. (This woman had hiked out of Bryce Canyon, not three months earlier, w/o symptoms. Anybody who has ever done this knows what a grinding hike this is. She is so lucky that she was less remote when the event happened - there is, like, nuttin’ near Bryce!)
I don’t know about statins and heart attacks. What I do know is that there was at least one world class doc at Mayo in Minnesota who said with a straight face that statins are so helpful and safe that they should be put in the water, like fluoride. That one didn’t fly.
In any event, I think that doctors expect that their advice sometimes will fall on deaf ears and it takes quite a bit to get them to react.
Full disclosure: I take a statin drug. High cholesterol runs in my family. My mother needed open heart surgery at age 87 (iron woman, lived to two months past her 100th birthday). I hope to avoid it.
I don’t know about statins and heart attacks. What I do know is that there was at least one world class doc at Mayo in Minnesota who said with a straight face that statins are so helpful and safe that they should be put in the water, like fluoride. That one didn’t fly.
In any event, I think that doctors expect that their advice sometimes will fall on deaf ears and it takes quite a bit to get them to react.
Full disclosure: I take a statin drug. High cholesterol runs in my family. My mother needed open heart surgery at age 87 (iron woman, lived to two months past her 100th birthday). I hope to avoid it.
-
Desert Deuces
- Posts: 4
- Joined: 2023-08-10 03:49:13
Re: What to do?
Seems I had the same or similar condition as FLguy - and I'm in Florida, too. You didn't say if you are still in Pennsylvania or if you returned to Florida. I'd be able to give a better response if you were in Florida.
My surgery was emergency surgery. I went to the hospital with a belly ache and the doctor said I need immediate surgery to fix holes in my colon and abscesses behind them. Surprise!! I woke up with a colostomy! Didn't even know that's what they were going to do.
All I got was instructions on how to change the pouch etc. and the surgeon told me I could have it reversed in 6 to 8 months,
I said NO WAY was I going back to being incontinent! Better to have the pouch and be able to go about doing things I miss doing, rather than be stuck at home because I don't have a clue when I'll need a restroom. And, I wouldn't be able to manage the unpleasant odor.
At least the pouch has a filter that obliterates the odors.
That's just my personal opinion. If you prefer to have the reversal, I'd say go for it. It's just not something I personally desire.
Good luck what ever you do!
My surgery was emergency surgery. I went to the hospital with a belly ache and the doctor said I need immediate surgery to fix holes in my colon and abscesses behind them. Surprise!! I woke up with a colostomy! Didn't even know that's what they were going to do.
All I got was instructions on how to change the pouch etc. and the surgeon told me I could have it reversed in 6 to 8 months,
I said NO WAY was I going back to being incontinent! Better to have the pouch and be able to go about doing things I miss doing, rather than be stuck at home because I don't have a clue when I'll need a restroom. And, I wouldn't be able to manage the unpleasant odor.
At least the pouch has a filter that obliterates the odors.
That's just my personal opinion. If you prefer to have the reversal, I'd say go for it. It's just not something I personally desire.
Good luck what ever you do!
Re: What to do?
DD, I have a colostomy that’s become permanent. Initially they planned to reverse things. Then they realized that I appear to have complications that create some risk, so they felt that as long as I was getting along OK it was best to leave things as is. That was in 2012.
I’ve become a believer that there are as many advantages as disadvantages to my colostomy, so far as daily maintenance. I still have a long rectal stump with diversion proctitis that I have to manage, but dealing with the pouch itself is a breeze. For years I used closed, disposable pouches because I preferred not to deal with what I thought would be a messy situation with a drainable pouch. But I found these really nice Coloplast pouches that avoid messiness and with an open pouch I don’t need to have supplies close by, I can use the restroom just like “normal” people.
I’ve become a believer that there are as many advantages as disadvantages to my colostomy, so far as daily maintenance. I still have a long rectal stump with diversion proctitis that I have to manage, but dealing with the pouch itself is a breeze. For years I used closed, disposable pouches because I preferred not to deal with what I thought would be a messy situation with a drainable pouch. But I found these really nice Coloplast pouches that avoid messiness and with an open pouch I don’t need to have supplies close by, I can use the restroom just like “normal” people.
Re: What to do?
Hi BillGK. Thanks for sharing your thoughts about statins. I just happened to visit the board, and I just happened to see them. I wanted you to know that they helped me a lot. I sure do appreciate it. Thanks again!
Olive
Crohn's. 2 stomas. Permanent ileostomy, mucous fistula
"I yam what I yam." Popeye
Crohn's. 2 stomas. Permanent ileostomy, mucous fistula
"I yam what I yam." Popeye
Re: What to do?
Hello, you'll.
So to give you a bit more context and also update you on the situation that I am in let me get a few things out there.
First, I am going to put a few things out there.
The hospital that I am dealing with is Geisinger in Danville PA. They are very backed up and are the only big hospital within the area where I live that is not a two-hour drive away.
Second, Yes. They really did tell me that it would be over a year to see my main GI doctor they told me that it would not be until April that I could see any doctor from Daville's GI team.
That was not acceptable to me. I went to the hospital and waited to speak with a patient advocate. That led to where I am now.
My main GI doctor still cannot see me. I was seen by another doctor who felt overwhelmed by my case. She ordered a few tests but only took what the doctor from my second opinion had to say as to what to do. That second opinion came from Penn State Health's Carolina Family Inflammatory Bowel Disease Center. They wrote four pages and sent it to my Geisinger Danville.
This visit only happened because I ended up with a patient advocate who did not play around. I have family that works at Geisinger Danville so when I went to this advocate she already had messages from family within Geisinger about what I needed. She got a director of operations for Gastroenterologist For the whole of Geisinger to give me a call. I have both his office and cell phone number now. His authority is less than my main GI doctor as she is a Gastroenterologist instructor for Geisinger. This director of operations got me seen and looked over all my records as well as the notes from Penn State IBD center.
Here is the thing.
Penn State feels that there were four critical errors made with my care.
1) Florida Hospital only followed up with me once after my first surgery. ( I did not have insurance back then) I was told only when I could go back to normal duty and that was it after. So two weeks after surgery was the last time I heard from Florida. Penn State did tell me that I should have gone right back to that hospital back in November of 2019 when things first started going wrong. ( I was working and living in PA. by then)
2) Penn State feels that Geisinger should have done several other tests before getting my Ileostomy.
3) Penn State feels that a reversal of my ileostomy is the best choice so that those tests can be done to determine what is going wrong with my digestion.
4) Penn State feels that a Proctocolectomy might be in my future but without some tests to see what my digestion is doing, I will be a high risk for feeding intervention.
Here is the big what the heck.
Penn State and the new Geisinger doctor that I saw feel that I need a reversal so they can be sure that I do not end up needing feeding interventions. They both noted the huge risk due to how bad I have diverticula in my colon as well as the muscle issue that I have. They feel that this is a good risk to take but I might end up with an extended hospital stay due to it.
Waking up my bowel could be bad. The new GI talked to me about feeding interventions while we see what my bowel does so that way I do not get sick waiting for a test to decide what to do.
Now here is the big thing. Feeding intervention does not scare me. I grew up with a mother who was and a sister who is currently a special needs teacher.
I care only about improving my quality of life which sucks right now. My ileostomy hurts all the time, I have no energy and I am depressed.
I would gladly go back to bowel incontinence if it meant not being in pain all the time, but that was not the case before my ileostomy due to muscle spasms that happen all the time even now.
Penn State had a few ideas about what to do for that and in October when I meet with my surgeon we will be talking about everything.
This has been a crazy life event for me and all I want is my quality of life back. Now that I have a better idea from GI about what we can do I feel like it is the only choice until tests can be done.
So to give you a bit more context and also update you on the situation that I am in let me get a few things out there.
First, I am going to put a few things out there.
The hospital that I am dealing with is Geisinger in Danville PA. They are very backed up and are the only big hospital within the area where I live that is not a two-hour drive away.
Second, Yes. They really did tell me that it would be over a year to see my main GI doctor they told me that it would not be until April that I could see any doctor from Daville's GI team.
That was not acceptable to me. I went to the hospital and waited to speak with a patient advocate. That led to where I am now.
My main GI doctor still cannot see me. I was seen by another doctor who felt overwhelmed by my case. She ordered a few tests but only took what the doctor from my second opinion had to say as to what to do. That second opinion came from Penn State Health's Carolina Family Inflammatory Bowel Disease Center. They wrote four pages and sent it to my Geisinger Danville.
This visit only happened because I ended up with a patient advocate who did not play around. I have family that works at Geisinger Danville so when I went to this advocate she already had messages from family within Geisinger about what I needed. She got a director of operations for Gastroenterologist For the whole of Geisinger to give me a call. I have both his office and cell phone number now. His authority is less than my main GI doctor as she is a Gastroenterologist instructor for Geisinger. This director of operations got me seen and looked over all my records as well as the notes from Penn State IBD center.
Here is the thing.
Penn State feels that there were four critical errors made with my care.
1) Florida Hospital only followed up with me once after my first surgery. ( I did not have insurance back then) I was told only when I could go back to normal duty and that was it after. So two weeks after surgery was the last time I heard from Florida. Penn State did tell me that I should have gone right back to that hospital back in November of 2019 when things first started going wrong. ( I was working and living in PA. by then)
2) Penn State feels that Geisinger should have done several other tests before getting my Ileostomy.
3) Penn State feels that a reversal of my ileostomy is the best choice so that those tests can be done to determine what is going wrong with my digestion.
4) Penn State feels that a Proctocolectomy might be in my future but without some tests to see what my digestion is doing, I will be a high risk for feeding intervention.
Here is the big what the heck.
Penn State and the new Geisinger doctor that I saw feel that I need a reversal so they can be sure that I do not end up needing feeding interventions. They both noted the huge risk due to how bad I have diverticula in my colon as well as the muscle issue that I have. They feel that this is a good risk to take but I might end up with an extended hospital stay due to it.
Waking up my bowel could be bad. The new GI talked to me about feeding interventions while we see what my bowel does so that way I do not get sick waiting for a test to decide what to do.
Now here is the big thing. Feeding intervention does not scare me. I grew up with a mother who was and a sister who is currently a special needs teacher.
I care only about improving my quality of life which sucks right now. My ileostomy hurts all the time, I have no energy and I am depressed.
I would gladly go back to bowel incontinence if it meant not being in pain all the time, but that was not the case before my ileostomy due to muscle spasms that happen all the time even now.
Penn State had a few ideas about what to do for that and in October when I meet with my surgeon we will be talking about everything.
This has been a crazy life event for me and all I want is my quality of life back. Now that I have a better idea from GI about what we can do I feel like it is the only choice until tests can be done.
I fart in your general direction!
Re: What to do?
Very glad that you were able to see a doctor!!
Best wishes and good luck!!
Best wishes and good luck!!
Ileostomy due to UC - 50 odd years
Re: What to do?
Wow, what a story! Situation is so much clearer now.
Patient advocates must be pretty busy at this point. My frame of reference is Mayo, and they are so backed up, what with covid after effects and staffing shortages, that in some areas that it’s up to a year. I have a small procedure (non-bowel) and will not be seen for almost a year since requesting to be seen. Not a huge deal w/me, but some folks are fed up and going the patient advocate route. Good move on your part!
Will the surgery be at Penn State?
Patient advocates must be pretty busy at this point. My frame of reference is Mayo, and they are so backed up, what with covid after effects and staffing shortages, that in some areas that it’s up to a year. I have a small procedure (non-bowel) and will not be seen for almost a year since requesting to be seen. Not a huge deal w/me, but some folks are fed up and going the patient advocate route. Good move on your part!
Will the surgery be at Penn State?