Punching Crohn’s in the balls!

[Papantoine]

In hospital right now. It was touch and go for a while. I have the ken doll, so mouth to ileostomy full loop but thank Jesus still most of my small bowel. And the whole thing was blocked and dangerously fully dilated up to 6mm all over the small bowel. For a week, in ridiculous pain (but we crohn’s sufferers know how to deal with that) Vomitting intermittently and taking warm baths, doing stretches and hoping it unblocks. Turns out I was making it worse because, it was not a physical blockage. Ambulance ER gastro nasal tube for three days and pain still really bad, nothing coming out of the stoma and the surgical team was getting ready to get off the bench. But I’ve had so many abdominal surgeries (from trying to do the pelvic pouch and 4 takedowns that failed) that they were legitimately worried that I wouldn’t make it.


I got a room out of the ER. And yesterday, things started moving a little bit. Minor gas and a bit of liquid in the ileostomy bag (before it is fully EMPTY) and even the stoma started looking more normal. But the surgeon was still ready to go for today.

But then today things started moving. I had an ileostomy that showed a healthy small bowel up to 70 cm.

And so they put in a pikline. I’ve had to take no pain killers since this morning almost no cramping. Still have the gastro nasal tube but getting nutritional via the hard line and they hope that in a few days water (Ahhh water! as we crohn’s sufferers know everyone who worries about starving is crazy, my max is 21 days without food, but water… I dream of tall glasses of water…mmm)

and then soft foods and if all goes well back at home before christmas so that I can celebrate with my boys!

Another close call and the crohn’s sufferer wins. Punches crohn’s straight in his measly balls and says screw you death NO TODAY!

So, that is what has been going on with me lately. Sorry I have not been active in the forum. I’ll get started again.

 

[Papantoine]

 

[Papantoine]

That is my « yummy » meal for today.

 

[Papantoine]

Oh and I had a nice moment with the surgeon. No one sees me as a tough guy. I am not. I am a peaceful school teacher. I’m not impressive and look like a regular pudgy middle aged guy. Not the dad who can spin all the kids on my back at the park. (Crohn’s has caused permanent damage in my hands feet and back, has spent times in my lungs, attacking my knees and hips and causes me to develop blood clots cause it’s in my blood now!

But every summer, I take all the kids, my boys and the whole street for whole days to the amusement park. I can’t run or jump or do many push ups but I can walk and pull a cart with all their snacks. But again, it impresses no one, because, how would they know. I just look like an average dad.


So anyway, the surgeon was saying how just in case she does need to operate, she needs to give me the bag nutritional in my heart (tpn?) and I told her that I was tougher than she may think and that 8 days without food is fine, (my record being 21) but she explained the medical reasons (malnourished people die after surgery) and then she paused in the door and looked at me with a smile and said « I’ve seen all your scars I know exactly what kind of tough guy you are. »

And I know it’s vain, but it really touched me to have someone who knows how tough I am.

So all of you feeling weak and sick. You are alive. You beat crohn’s and you will beat it again. You are tough as nails. Tougher than Mike Tyson!

 

[Papantoine]

In hospital right now. It was touch and go for a while. I have the ken doll, so mouth to ileostomy full loop but thank Jesus still most of my small bowel. And the whole thing was blocked and dangerously fully dilated up to 6mm all over the small bowel. For a week, in ridiculous pain (but we crohn’s sufferers know how to deal with that) Vomitting intermittently and taking warm baths, doing stretches and hoping it unblocks. Turns out I was making it worse because, it was not a physical blockage. Ambulance ER gastro nasal tube for three days and pain still really bad, nothing coming out of the stoma and the surgical team was getting ready to get off the bench. But I’ve had so many abdominal surgeries (from trying to do the pelvic pouch and 4 takedowns that failed) that they were legitimately worried that I wouldn’t make it.


I got a room out of the ER. And yesterday, things started moving a little bit. Minor gas and a bit of liquid in the ileostomy bag (before it is fully EMPTY) and even the stoma started looking more normal. But the surgeon was still ready to go for today.

But then today things started moving. I had an ileostomy that showed a healthy small bowel up to 70 cm.

And so they put in a pikline. I’ve had to take no pain killers since this morning almost no cramping. Still have the gastro nasal tube but getting nutritional via the hard line and they hope that in a few days water (Ahhh water! as we crohn’s sufferers know everyone who worries about starving is crazy, my max is 21 days without food, but water… I dream of tall glasses of water…mmm)

and then soft foods and if all goes well back at home before christmas so that I can celebrate with my boys!

Another close call and the crohn’s sufferer wins. Punches crohn’s straight in his measly balls and says screw you death NO TODAY!

So, that is what has been going on with me lately. Sorry I have not been active in the forum. I’ll get started again.

Edit: important, while I was managing it at home I was also drinking a lot and of course not eating. Small gulps and holding off the vomitting. Trying to slowly flush it out. Which can work with small physical blockages. But not when it’s an inflamed bowel.

 

[Jo-mom]

@Papantoine - thank you for sharing your story. You have great strength and I really like that you enjoy life no matter what cards you have been dealt with.

 

[Papantoine]

Thank you. I wish I could figure out how to edit. I am in hospital writing on my phone and with the pikline on my left arm, I can only write with one hand (and sometimes the auto correct changes words that I don’t notice. For example I did not « go for an ileostomy » I went for an « ileoscopy » (and once again I had to write that word three times because the spell check changed it!)