Moving forward. Some sad, some funny.

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Sadly this is just the start. My ileostomy surgery back in April was just the first part and moving forward will be big major surgery.

The sad thing is that the ileostomy surgery was not enough and now the major surgery will be harder and require more of everything. I am going to be looking at a proctectomy (Full removal of the bowel and sewing everything up Ken Butt)

I knew that this might be a big possibility with everything still going on but this surgery will have major recovery and will affect everything. The big thing with recovery is that this will be several surgeries maybe over several days all while in the hospital. So now I just have to wait to see my surgeon next month and figure out when everything is going to be done. only one thing I am praying for (Please not during Christmas)



On the funny side, I can get away with mooning people after this because I will not have a butt hole thus not exposure so.

 

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I pray everything goes well for you on this major operation and that the outcomes will be successful

 

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@ThatFLGuy

Did you ever receive a diagnosis? What is the cause of all your issues? (I don't recall seeing it if you ever posted it.)

I remember that the doctor told you this surgery would not fix your pain, which it didn't.

What benefits will the future surgeries give you?

 

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Good luck on your surgery and recovery. Praying for a speedy recovery

 

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@MezaJarJarBinks

So, I got a lot of answers to that very question today because I did not really understand my diagnosis. (a lot was on my surgery report that...Yea I never read all the way through)

So I have a lot of bowel stuff wrong.

I have Dyssynergic defecation with rectal hypersensitivity type 2

(My puborectalis muscle tightens when it should relax during defecation)

Chronic Pelvic floor dysfunction with pelvic floor pain

Bowel dysmotility (Bowel does not work told it is like a blocked up drain and the medication I was on was like Drano but it stopped working and the drain does not move stuff anymore)

GI told me today I am the 1% of 10% that do nothing except surgery will fix what I have wrong.

The dysfunction has to lead to pelvic floor muscle and nerve damage so this is never getting better.

The pain is from spasms that likely will only go away once the muscles are no longer there.

They are talking about major surgery to take out my bowel and sever the miss firing nerves and sew everything up.


The thing about why it took so long to get something more is the crazy part.

I do not have a typical case. Nothing else we tried helped so I know what comes next.

 

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My God man....I feel so bad for you. I don't know how you do it, but you seem to be able to carry a good attitude while the news is so bad. You must be an amazing person. Thank you for showing courage to all of us. I pray that your ultimate goal you seek goes well for you. Good luck to you sir.

 

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Can’t tell you how incredibly you’re handling all of this these days. I remember when you first started posting and I must admit I was a bit concerned for you initially as it seemed you had so little information, the Docs seemed to be running you around, yet the you have persevered is highly admirable. You really are handling all of this amazingly well.
Again, wishing you all the best as you continue to fight forward!

 

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Praying for you.

 

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@ThatFLGuy Please, please, please get a family member to move with you closer to the hospital. I think you have to admit that after this you are going to require infinitely more help of every kind, including somebody living with you who will care for you. You will likely also still need nurses at home in addition to a family member. I hate to say it, but you haven’t seen anything yet.

 

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Praying for guidance of the hands of the surgeons and your healing over this long road you are facing!!

 

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@ThatFLGuy

Thanks for trying to explain something so complex. I had to do some "Googling" to translate the words I have never seen before now. You have such a complicated path ahead of you.

I ask God to lead you and comfort you in your struggle.

I have had a long, difficult path myself. The most important thing I did through it all was to read the Bible and find myself there. I read several different translations cover-to-cover. One of the things I learned from all that Bible reading was that I may have suffered a lot, but not nearly as much as I deserved. God owes me nothing, and I could never pay back as much as He has given me.

I even found the name of the person who claimed the title to be the greatest sinner of all: Paul. Before Paul became the apostle to the gentiles (non-Jewish people) he was actively destroying early Christians. That means that no one can say that they have sinned so much that they can't be saved from hell.

I also learned that God has the right to bless whomever He wills, and He also has the right to curse whomever He wills. The book of Job will make that abundantly clear to anyone. Job was one of the most righteous men in the Bible. God bragged about Job to Satan, and yet God allowed Satan to persecute him beyond imagination. Even Job's wife told him to just "...curse God and die..."

Again, I pray that you never make the mistake of cursing God but instead, seek Him and ask Him for understanding and help. Amen!

 

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Bit of an update. I got my social security hearing date now so now I have a time line. I also found a place to get emergency supplies. A pharmacy just 20 minutes away carries Tranquility pull-ups. I have not used them in years but the lady there said that they are getting Tranquility briefs and is open to suggestions for other products to carry.

Also I had a long conversation with my parents about the whole big thing and we are going to cross that bridge after my appointment with my surgeon in September. My parents have a house up here in Pennsylvania and my grandparents have a spare room at there house that is only 10 minutes away from my secondary ER/ED so we are going to have a big conversation in September when my parents get back up here about surgery recovery. Unless everything falls apart I will stay living on my own.

I am too old for the what comes with living with my parents and living back in Florida would be impossible for me now.

 

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I had to live with my parents again a few years back after I fell off the cliff and simultaneously had two kinds of cancer, and it was truly hell, but that’s because my dad is severely verbally and physically abusive with me. Otherwise it would have been better. My cat and I stayed locked in my room most of the time. But it doesn’t sound like your dad or mom are mean.

 

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@snow

My parents are great and have done a lot to help me. They have paid a lot to keep me going.

The issue is that my parents do not live in Pennsylvania. Their house up here is not great for wintertime and costs too much to heat when it is that cold. They cannot afford to support me and my apartment while I live in their house up here. Going back to Florida is not an option because my doctors are here.

My hope is to get this next surgery out of the way before the end of the year so that way my parents are still up here before the biggest winter time.

My surgeon is very quick at getting me in so I hope that happens sooner than later.

Recovery-wise, I am looking at a week or more in the hospital and then a long home recovery where I cannot do much myself. But that was the same way as this last surgery except for my range of motion will be a lot less after this.

I have to be okay on my own after 24 hours or the doctor will send a home health aid to help me out (It is fully covered by my insurance and already put on my file from the last surgery but I did not need it)

So no matter what I will be okay. The biggest thing is that even right now my activity level is very bad as I have no energy and get tired way too quickly. I am seeing a nutritionist the first week of September the day before I see my surgeon again so that will be good to get an idea of what is going on. They also already did advanced blood work so the nutritionist can have an idea of what I needed.

I know already that they will likely have more tests for me then as well.


Truly I just got to get through the social security hearing and insurance stuff so that way I have security in my financial stuff.


The GI doctor I saw the other day said there is no way that I will not need this other big surgery or more surgeries over the next few years due to my current status.

ileostomies have the issue and mine is far from right already so it needs to be fixed even if we do not do anything else right away.

The GI doctor said they will likely do three surgeries at once or over two days while I am in. So I hope that on September 8th this all gets set up because my current ostomy sucks at hurts all the time. Something I have to talk to my surgeon about.


I just got to keep my stress down and try to stay happy until I know what my surgeon is going to do.

 

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@ThatFLGuy You have learned so much over the years and are now well-spoken about your ailments. Good work. It’s not easy to learn all the terminology and side effects, and it’s *definitely* even more challenging to have to live through the procedures and recovery. From what I’ve seen, if anyone can survive through these hardships you face ahead, it’s you.

One word of advice: aim for contentment more so than for happiness. They you’ll find yourself extra-thrilled when you do catch some Happy

 

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Good luck on your upcoming procedures.

 

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@snow

So one big side effect of my ileostomy/ostomy is even a little dehydration leading to a very dizzy feeling. One conversation I had with the GI doctor I saw was that there is nothing I can do at night to stay hydrated when I sleep. She mentioned that a lot of kids who have ileostomy need supplemental hydration through a feeding port due to incontinence adding to lose of liquid. So that is something that will be addressed when I see the nutritionist. Not something I want but when I feel like I am going to pass out just standing up from sleep then it's something that has to be talking about.

 

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@ThatFLGuy Man, you sure suffer. That sounds horrible. I’m glad you’re going to the nutritionist. They really know a lot. I’ve seen one in the past.

 

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I went to a nutrition expert after my kidney failure. They suggested to follow a kidney friendly diet, which I did. Kidney function is improving a little each time. They also told me I could probably eat anything I want, but in MODERATION.