When it rains... Life update.

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Life has had a lot of ups and downs over this month. First, I have to wait until September to see my Doctor again and set up the next surgery. And murphy showed up and decided that I needed yet another thing to make my life crazy. That would be an issue with the transmission of my car. So now I am stuck getting rides. My car does run but only goes 35mph as the transmission does not shift. So I can drive it to my local store as it is only a block away and the speed limit in town is only 25mph anyway but makes getting to the doctor hard.

Also, a lot of my past issues are now back and worse/just as bad as they were before surgery. My bladder is worse than before. I still have my bowel and I have been having bad spasms in the muscles that I have nerve damage in. So I still need protection in the form of a diaper and now have an ostomy to deal with as well. Some things have been getting better but others make me wish that we had just done the big surgery and got it over with. I really hope to get it done before the end of the year but with holidays at that time, it will be hard.

The biggest issue with this ileostomy is that I lack energy a lot of the time, have trouble sleeping, and have to stay really hydrated (which messes with my bladder a lot)So I am just getting by one day at a time.

 

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Glad you checked in.

 

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Life has had a lot of ups and downs over this month. First, I have to wait until September to see my Doctor again and set up the next surgery. And murphy showed up and decided that I needed yet another thing to make my life crazy. That would be an issue with the transmission of my car. So now I am stuck getting rides. My car does run but only goes 35mph as the transmission does not shift. So I can drive it to my local store as it is only a block away and the speed limit in town is only 25mph anyway but makes getting to the doctor hard.

Also, a lot of my past issues are now back and worse/just as bad as they were before surgery. My bladder is worse than before. I still have my bowel and I have been having bad spasms in the muscles that I have nerve damage in. So I still need protection in the form of a diaper and now have an ostomy to deal with as well. Some things have been getting better but others make me wish that we had just done the big surgery and got it over with. I really hope to get it done before the end of the year but with holidays at that time, it will be hard.

The biggest issue with this ileostomy is that I lack energy a lot of the time, have trouble sleeping, and have to stay really hydrated (which messes with my bladder a lot)So I am just getting by one day at a time.

Hey @ThatFLGuy;

It's good to hear an update. I am thinking of you tonight. Car issues are no fun. No fun at all.

But you will get through this - hell or high water, no doubt about that.

In regards to the ostomy - it's no big deal. People who have them have started an awareness campaign in response to the humility of having to wear them. I suppose diapers are kind of the same thing.

Deep down, you feel less. But you are not less. In fact, you are more. Transmissions problems are rough; Ford's are well known for there transmission issues but I don't know what kind of car you have.

If you need to talk, like I said in another's post. We are here to support each other.

Take care and as always -

Blessings In Christ,
Honeeecombs

 

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I agree with honeeecombs. Hang in there my friend.....this too will pass. In the end you will be better. Just hang in there and know that people out here are with you. You will get better. Vent a little more on these forums and also look up youtube videos of people who have survived what you are going through. I know doing such things helped me.

 

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@ThatFLGuy I second MayMay, good to hear from you. What’s the next surgery, a colostomy?

 

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@ThatFLGuy I'm not great at giving support so all I'll say is hang in there and keep fighting. Keeping you in my thoughts.

 

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@ThatFLGuy I'm not great at giving support so all I'll say is hang in there and keep fighting. Keeping you in my thoughts.

Sometimes just a few words is all a person needs. You are a terrific person just for showing that you care.

 

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@snow

I have an Ileostomy now (Got it back in April) The next surgery will be a colectomy or more likely a proctocolectomy. The hope was that this time an ileostomy would give my bowel and rectal muscles time to relax but again my doctor knew this was a long shot. In September the conversation will be about what will happen next and how long I will have to wait.

Right now all the spasms and things that are going on point to the need for a proctocolectomy where my whole bowel and rectum will be removed.

The big hope was just to remove my bowel but now that we know that the nerve damage is farther into my rectum than we thought there is no way an ileoanal anastomosis (Connecting the small intestine to the rectum) will work for me. So I will be stuck with an ostomy. Also, we will be addressing my continued bladder issues. They have actually gotten worse since this last surgery and I have yet to go back to urology (The last urologist did nothing, not one test so my surgeon wants to find me a new one in September to decide what to do). So right now things still are very up and down health-wise but life moves on one day at a time.

 

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@ThatFLGuy Thank you for staying the details.