Ideas, Thoughts, and Fears.

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This month showed me how much different things are now that the botox I had back in August has worn off. My Colorectal surgeon really felt that this was a long shot and after the last few days, I feel that he was right. There are not a lot of other options moving forward that he gave me but with the current amount of trouble I have been having I do not see many options.

Yesterday I had spasms for over two hours after my first BM of the day. Then, had them for a few hours after eating.

The Bental that I take keeps the gut spasms from getting so bad I end up having to go to the ER.

Here is the thing though. The last few days have been bad enough that I debated in my head going and getting checked out.

My Bm's have not been normal. I have not had as many as normal and I have felt sick for a few days.

I truly do not know where to go from here. I don't see my GI or surgeon tell December. See PCP on the 30th.

The thing is now I am thinking that if things get worse while I am away during Thanksgiving, then what. I am on Medicaid but it is through my local hospital so if I end up in the ER in Florida then what?

I know I am overthinking this but I am truly worried about what is going on.

I am going to try to up my water intake and have for the day today and see if it helps.

It just sucks that I keep feeling this bad.

 

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Call the medicaid office and ask them if your medicaid would be covered out of state.I'm sorry though to hear that you're having such a bad time. All these odd things cause worry I'm sure. More water is nearly always a good bet. Hope the next few days are better for you.

 

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Your experience with missing your GI Botox after it wears off is also what I experience when my bladder injections wear off. Same with my migraine Botox, which works even better than the bladder Botox. Fortunately my migraine Botox lasts nine months and helps by about 75-80%. The bladder Botox helps me by about 50% in the day and 30% when laying down. It helps with both frequency and intensity. Sometimes I still have a hint of bladder Botox left helping me at the end of five months. I got the migraine done again today and will get the bladder in 4-6 weeks. I hope you can get it again soon.

RE: FL
Every hospital has to admit you if you begin in the ER and need to be admitted. Yes, sounds like you would owe them money, but hey, they can’t sue you for money you don’t have. There is always bankruptcy.

But maybe just this one year while you’re waiting for a diagnosis, you should plan on staying home because having to go only to your own hospital is a scary rule, and you may need to comply. I’m surprised it’s legal for Medicaid to only pay at one hospital?

I’ve never spent a Solsticemas away from my parents and that would be extremely challenging.

Good luck if you choose to stay home, or if you choose to travel.

 

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I think upping your water intake to see how things go makes sense. Sometimes it's the simplest solutions that are the most help. But probably best to not just limit it to a day but try to work in getting more water into your regular routine.
And do get the facts on what you Medicaid can cover and what it won't especially for out of state travel. I don't see why Medicaid wouldn't cover any hospital that you may go to. But please get the facts on it and you will be able to consider traveling more confidently.
This month sounds like a rough one for you but hopefully things will start going better. And I hope you feel better soon as well!

 

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@snow

Few Questions.

How long have you been getting Botox? (It was the first time for me)

Does Botox work better after 2,3 doses?

I am really debating doing the Botox again but it will depend on what my GI doctor has to say. She was not part of that choice last time.

The big thing is that all the spasms are back and last time I had me feeling the way I do now.

I do not even know that my Medicaid would/ will sign off on another surgery without a fight. I don't want to go through an ostomy surgery without a lot of knowledge as to how it will affect my life.

That is why I am thinking about Botox again. Yea, it does make matters worse, but not having the spasms I think was better. I still have accidents either way so.


On the 17th when I see my Physical therapist I am going to decide if I am going south this year. I don't feel good enough right now to drive down.

I truly only want to go to see my new nephew after he is born.

As for Christmas, I all but gave up on the idea of going to Florida for that. Too many appointments and the risk of getting stuck due to snow up here so.

As for the Florida hospital thing. Not worried about that. Just that if I get sick I do not want to get stuck in the hospital in Florida again.

 

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Hello. I’m falling asleep right now but I’ll write answers to your questions this weekend.

 

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@ThatFLGuy Here are my answers to your questions:

I have been getting Botox for five years but I skipped a year because I couldn’t afford it. My insurance doesn’t help pay much for Botox unless I’ve met my $6,000-$8,000 out of pocket max.

I have not noticed that Botox works any better or worse after subsequent doses. That is true for both my bladder and my migraine Botox. It has worked consistently for me. The first time I got it for my bladder, they started me on the standard 100 units. But it didn’t help much so my doctor increased it 200 units. At any given moment in time, a human can safely handle 400 units; after that it’s extremely lethal. I get 200 for my bladder and 200 for migraines, so I am maxed out on my Botox total body dose. Lol, no room left for cosmetic Botox!

Do you know how many units they gave you? Maybe if you think it would help you better, you could ask them to try to increase the units you receive.

I think your decision about Christmas is a good one. I hope that if you need another (dreadful) surgery, that Medicaid will not fight it when your doctors say you need it. You don’t need another battle and paperwork nightmare.

 

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@snow

Thank you for the answers.

Just found how many units they gave me on my discharge sheet. It was the standard 100 units.

Increasing it is a good thought. Like I said in other posts, this doctor felt like this was a long shot worth trying. Tomorrow I have PT and I hope to get some answers. From there I will have a better idea of what to ask when I see my Colorectal doctor again.

I am really trying not to have to get the big surgery but after this botox wore off I don't know what else to do. The thing is that the procedure I had done is not typical. The doctor had to expand my muscle first then use the botox to do what it does. I don't know if they could expand that muscle more and then up the units and see what that would do.

Right now if my dad was not already up here (Just got in tonight and is going to help get my car right) I do not think I would be going south for Thanksgiving because the spasms I am getting are very bad and making my bladder issues really bad.

So, I guess I will see what my PT thinks if we get through the appointment as it should go. I am going to take some chux's with me this time and try to get everything done no matter how I feel so we get an idea of how the muscles are working or not working.


Thank you for the answers though as the unit thing I did not have a clue about. This doctor made one call and got this botox signed off on so I don't know how a big surgery would go but he does not seem to be someone that my Medicaid says no to. So I hope it keeps going that way.

 

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Good luck at PT! Let us know what they say!

 

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@snow

Pt went well today. Got a full check-up as I should have. I will spare the TMI.

Pt had a talk with my care team (Less my GI, She was very pissed that GI was not on the zoom call).

Colon doctor doesn't like the Iterstem idea as it will only fix one of the five things I got going on.

Pt feels that we should try as many non-surgery things as we can. (I agree with that)

Colon doctor feels that trying a test to see how long food takes to get through is needed to decide where and if an ostomy would work. (I agree with that)

Pt also talked to her friend about pain management. (That doctor only deals with people that are critically ill but did say to talk to my PCP because there are a lot of things that can be tried)

The only other thing that was noted was that GI needs to step up or even my PT thinks I should replace the GI doctor. Urology doctor needed to do more so I need to find a new one of them

November 30th is PCP and that I will be asking for a list of Gastroenterology, Urology, and neurology doctors that are the best to look at what is going on with me.

So I am going to work on that.

My PT is a saint and at this point, she is fighting for me.

Last, my PT said that If my PCP is not going to start coordination of care then I need to replace him as well.

All, in all. A good appointment but got a lot to think about.

 

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I’m glad your PR is so good. I agree that surgery in this case is the last option. I think the colon doc has a good idea about trying to figure out where food goes wrong for you.

Yes, I vote for a new urologist and a new GI doc and a new PCP. I also highly recommend getting a referral to a pain clinic. I just started that last month and I wish I had started it 11 years earlier when it was first recommended to me by a physician. I held out as long as I possibly could.

Do you have to get referrals from a PCP to see a specialist? I don’t. I couldn’t go back to that HMO type insurance where the PCP decides everything for you. I love PPO where I choose who I see, when, and why.

Well good luck at the next PCP appointment!

 

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Thank you for not TMI; I appreciate that

 

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@snow

No, I do not need PCP referrals. My only issue with getting new everything is I have no clue where to start to find good doctors so I want to talk to PCP about that.

The pain clinic I may need a referral for but I am going to work on that when I see my PCP.

 

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Sounds good. It is hard to start with a new doctor you don’t know. I’m doing that with a urologist right now.