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semicolon306

semicolon306

Joined
Mar 25, 2010
Messages
167
Well after about 15 doctors appointments and numerous test they feel it is time to remove the "J" pouch. They all agree and have also talked to other doctors that they NEED to get this out, before it gets worse. The have set the day for June 1st in Hartford Hospital in CT. One surgeon is the one who originally placed in the pouch and the other one is a neurosurgeon. I get to have him in there, since my pouch connected itself to my lower spine and there are some nerves that wanted to be part of this party. So when they remove this they have to be careful of the nerves involved, most of them controlling the right leg. I have a follow up appt on Tues with the neurosurgeon, after having the MRI - is it good when they call so quickly after getting the films? Stating he really needs to see you prior to your surgery, then give me an appt 4 days before my surgery. I was like ah NO, I will see him next week, THANK YOU. I explained to them I am quite attached to my right leg and am pretty happy with the way it currently is working and would REALLY like to keep it that way. Will know more after this appt, but there is a chance I will need to have a surgery after the removal of the "J" pouch to "SCAPE" and clean my spine, to rid it of the infection.

They honestly will not know what is involved till they open me up and see what is really going on. The MRI's and CT scans show it, but they all look at them and say hmmmmm. I should have born with fur, I feel like a guinea pig, LMPO

They are predicting I will be in the hospital for 5 - 7 days and then home for 4-6 weeks. Can only imagine how this one is going to go, abdominal staples, bum will be closed, and a new stoma location - OUCH. Do you also get ICE CREAM in the hospital like you do then you have your tonsils out? Oh yea forgot I am lactose intolerant, DAMN in! Can I have the Red jello and the lemon italian ice, PLEASE (yuck)

Have received many free samples from suggestions by the supportive people here - thank you all. Have added the new plumbing to the rest room and a special rack for supplies and a place to have some bags dry. Had these in the past and make is so much easier for me to clean and empty the 2 piece pouch.

I will keep you all update to date and there will be some updates on my FB, for those I am friends with.

Thank you all, I know many of you helped me as well as so many others, we need to stick together. Many people have each others backs, NOT us, we watch and tell the others when the bathroom is open - LOL
 
I highly recommend the orange sherbet...that and the chocolate pudding....they were the only things I'd eat in the hospital...the rest was just gross!

Good luck with your surgery!
 
Good luck Mark
I love your sense of humour, always makes me laugh! so inspiring.
xxx
 
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Good luck semi. Things will go great and you will be back here telling us all about your NG tube and liquid diet experiances.lol In this situation, we do have your back. We'll still tell you when the bathroom is open and we'll even hold the door open for ya.
 
Good luck! What is the date for your surgery? It sounds like a complicated surgery but I am sure all will go well.

Keep us posted on your progress! -Amy
 
June 1st is the main surgery to remove the pouch, Tomorrow have the neurosurgeons appt to see if they are going to need to scrape the spine, after the June 1st surgery. I will also find out if there is any chance for nerve damage when they remove the pouch. I am ready mentally and definitely physically ready to have this completed. Nightly pain and weakness like I have never experienced before. I at least hope they can learn why this has happened and why then can do to prevent it from happening to others.

Thank you again for all your support. Nice to have a place where you can talk to people who understand you condition and they not think you are just another ******* :) LMPO

Wife will be putting posting on FB my progress, if anyone is interest feel free to add me (inkedmedic).
 
GOOD NEWS -

So after the appointment today the update is that as of right now I am only going to be required one surgery, the "J" pouch removal / ileostomy / rectum closure. The nerves look to be clear of this j pouch attachment to spine. They did find an infection in my lower spine, so I will require a long stint of antibiotics, but that is better then scraping the spine. The pain I am currently having is do to the infection and effecting the area around the nerves. They think once they get rid of the infection, by removing the pouch, I will eventually have no pain. So June 1st just a quick four hour surgery and I should be good to go.

I pack my SH*T to go, LMPO
 
Wowzers... good luck with your surgery, mark! Will be thinkin' about ya as I am signing my own consent forms in the surgeon's office... lol (and I AM counting the days! LOL!)

Spine involvement.... that's a new one for me... have had fistulas to pretty much every other organ in my abdomen, including the lungs (that was nasty), but nothing attached to the spine ever.... freakin' scary sh*t!!!
 
June 1st Tuesday at Hartford Hospital at 0930. They tell me I can no drink on Monday, do they realize I am going to have my ass sewn shut, I mean really, who would do that sober, LMPO. Not to mention it is also a holiday, sheese, NO FUN.

I am looking for a good looking colon, one that works well, new model and had not be invaded at all. If anyone knows of one, I will pay for the NEXT day air - LMPO
 
semicolon306 said:
June 1st Tuesday at Hartford Hospital at 0930. They tell me I can no drink on Monday, do they realize I am going to have my ass sewn shut, I mean really, who would do that sober, LMPO. Not to mention it is also a holiday, sheese, NO FUN.

I am looking for a good looking colon, one that works well, new model and had not be invaded at all. If anyone knows of one, I will pay for the NEXT day air - LMPO
Click to expand...

:ylol2::ylol2::ylol2: Wishing you a successful surgery day!
 
semicolon306 said:
June 1st Tuesday at Hartford Hospital at 0930. They tell me I can no drink on Monday, do they realize I am going to have my ass sewn shut, I mean really, who would do that sober, LMPO. Not to mention it is also a holiday, sheese, NO FUN.

I am looking for a good looking colon, one that works well, new model and had not be invaded at all. If anyone knows of one, I will pay for the NEXT day air - LMPO
Click to expand...

If you find one, can you get me one too? lol
 
Wanted to thank everyone for their support and see you guys soon, as a PERFECT *******. :)

All be well and we good, we TRY at least LMPO.
 
One word "OUCH" said in many different tones and made up new languages. Surgery time was about 3 hours and recovery time 3 - 4. 30 staples center of ABS, numerous stitches ones in rectum and stoma. Per him and the other surgeon everything Should be good. They were able to put my new stoma in almost the same location as the last one. The reason why this could be done was: so many Years (17) , the abs now on decent, and finally the original one was to to lower - so AL in all everything worked out. Slept all of day one on my Dilaudid PCA pump. Was up only up for a few Min's at a time, then right back out. That night I woke up around 1130pm. nit sure why but DAMN it I was ready to walk and I did, many of times ( did not want the gas pains). So yesterday I start having them episodes of sweating & NOT the the ones with a few beds of sweat. These things would cover all of my bed dressing and like 8 towels, that could b rung out. 1st episode Temp was only like 99. During the day this episodes got worse and did the temps, from 104 to 94.7. Then started the GAS pains, which I always get REALLY BAD. So I tried everything, spoken do, so take oral meds. No more drinks NOTHING Then I Needed to place in my own NG tube, since I am the only one I will let do them on me, LOL. Gas pains loosened stoma started to work and away I went. walking the halls. Later in the night had to be sent for a CT Scan where then place a large needle in the back and take out samples - NO FUN, but no the worst thing I Have ever had. Today I a hoping for the Foley to be out and more walking. Pain is down alot and after all my surgies I was scared about my ass being sewed up, but it was NOT that bad, considering everything else. I am still in the hosp for another 3 days, to make sure NO more Fevers, or concerns - I am ready to be home. Having my old friend back (STOMA) was like riding a bike I remember how to take care of it all the basics - we just spend alot more time in the mud then the boring people that use toilet bowls - LMPO (I am NOT talking about anyone here, I talking about the special people that use then one or twice a day)

Wondering if this will talk away all my old pain and weakness, I guess we shall know in weeks.

Sorry for any errors, but remember I am stil on pain meds, but wanted to give everyone an UPDATE
 
Geez, you guys are my heroes. Tough bunch of s.o.b.s. Here's to not adding anymore to your list Semi. Hope your on the mend.
 
Hi Semi -- Through the ringer again, I see! Keep on feeling better.
 
HOME Today - still sore in the "ASS" but they told me I can expected that for up to a month. Staples all removed ileostomy is working fine. Trying to do all my walk time to get rid of the "Gas Pains" I do NOT think people have any idea how bad these can be, and really there is NOTHING is to treat them, except to work out the gas.

Long Traveled road with many speed bumps & REST STOPS (bathrooms). Hoping and sure soon I will be back on the highway, just fair WARNING. DO NOT ride my ass, I do wear a two piece applicance and carry a spare bag :) (so think I need that made into a t-shirt)

Again, thank you all for your support
 
Glad to hear surgery went well and recovery is moving along. And most importantly, you still have your sense of humor!!

Get well soon! And get that gas out!

- Amy
 
Glad tp hear all is going well.....

I think the t-shirt is a GREAT idea!......and for some more 'sick' humor.....I used to have a 'blood spattered' t-shirt I'd wear around.....and of course the 'co-ed naked EMT'.....:)
 
So glad you've made it home! I guess the "wind releasing posture" wouldn't be very appropriate so soon after surgery, but you'll find a way.:shifty-t:
 
Glad to hear everything went well (well, as "well" as can be expected anyway), for you, Mark! Hope home is treating you well!

PS I LOVE the T-shirt!!!
 
So it has been 17 days since my surgery. Pain is much better and able to start doing stuff, sitting up which is huge. Eating well and trying to gain back the 30 lbs I lost. Everything is going well, only complication is that my surgical scar on my abdomen has opened a bit, so might have to have it open and packed. Thinking they took the staples out a little early, LOL. Stoma is fine and nice only having to empty 4 times a day, instead of always being in the rest room. I found it easy to accept, thinking since I had one in the past. I can see how it would be hard for some to adjust, but for me it has been better. Knock on wood, I have not had any of the pain I used to have prior to the surgery. Hoping to be back the work the 1st of July. Thank you all for your support.
 
Hi Mark...so glad you're doing well :) I can totally relate to the loving only having to go to the bathroom to empty 4 times a day (that should probably slow down for you too). My incision opened as well, and I was having to have it packed for about 2 weeks afterwards, but it's not that bad (unless the packing gets suck...ouch!!). I'd rather have that than the crap (literally) that I was going through before my surgery.

I hope your recovery keeps going on well, and that you can get back to work in July :)
 
damn i wish i had caught this thread sooner!

just reading thru this thread and your attitude, its pretty awesome. truly you inspire me. your acceptance of the things you cannot change is quite amazing :)

good job to you, keep healing!

:D
 
Thanks, but what can we do. We have to deal with the cards we are given. I really think that this all makes us stronger once you accept it and learn / adjust to live with it. I think it was easier for them this time, since this was the second go round and this was coming down to life or death. People have been very supportive I deal with and I am able to educate them on the process, which I find helps them to understand our situation. EVERYONE has something wrong with them, it is just a matter and when they will figure it out, LMPO

Life is what you make of it, I am living it to the fullest
 

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