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Back to the cottage


Well, last night after letting my surgeon have it for listening but not hearing me I felt two very sharp pains a few inches to my left of the ileostomy. They went away and I thought nothing more of it.

I have alarms set overnight to remind me that I’m on TPN and need to empty usually 3 times overnight. Last night I only had to empty once. The alarms still went off I just wasn’t having any output. 
Woke up today with a large grapefruit sized lump where the pain was. I immediately called the surgeon and told him what I just told you all twice. He said it was a hernia and would have to wait until the next surgery. 
I had an appointment with my primary care so I showed her and she instantly put in for an ultrasound. It a complex fluid collection exactly like I said I thought it was. I’m supposed to have chemo tomorrow but that is problematic gonna get cancelled and a CT scan needs to be ordered. I tried my best to get answers prior to 5pm they have 30 more minutes. 
No way am I hooking up to TPN tonight. 


probably getting admitted for a complex fluid collection and spend another US holiday in the big house. Dammit

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Oh Paul -so very sorry you are going through this.  Sure hope it will be resolved immediately.  As much as I dislike hospitals they are good when you need them.  Will be thinking of you and wishing you the best - Hugs, jb 


Oh no, I'm so sorry. You knew your body and they didn't listen. That's infuriating. You've been through so much, it's just crummy for you to have to go through this. I hope things fall into place as easily as possible for you.


Get better soon. 


Sonofabitch, this has gotta stop.  Paul, kick this thing.  We're all with you.


Ah crap - like you need another setback:( Hang in there; you have loads of support on the site. Sending good wishes from up north, K.


Its about time all this turned around for you, take care.


Praying 🙏 for you.   


So sorry you are going through all this. 😢 Sending big big hugs and loads of love your way. ❤️


You have had your share of new challenges and obstacles thrown your way, Abe. With a bit of luck you will overcome this one too.
All the best wishes.


I'm so sorry to hear about your latest setback :( I've always been a firm believer that we know our bodies the best! And, it is super frustrating when medical professionals don't "listen " to us! I too have spent many holidays in hospital,  but,  I always tried to make the best of it, and I'm sure u will too! Sending good and healing vibes your way.


Hang in there and keep advocating for yourself, and i hope this resolves itself without more surgery.  good luck


Site ruptured overnight, I thought my appliance failed as I just changed it last night, nope it was right next to it. Now they are going to lance and drain the remainder. I’m back on the floor I like with my favorite nurses and patient care assistants and I got a window seat, last night it was a bed looking at the nurses station, so upgrade there.
Needless to say but it’s been a messy morning, having to empty and measure output of bowels with the rupture site looking like a garden hose of puss. Anyhow all cleaned up.

Reply to Abefroman1969 are you feeling? Fever? I hope, beyond the emotional and physical demands, that you don't feel sick from infection. Sounds like quite a night, Abe.🙄


Let those nurses take care of you. 🤗🤭 Hope everything goes well.

Reply to eefyjig

Other than the rookie nurse I had last night who was freaking out about my hypotension and decided that I needed to be awakened and have my bp monitored every 15 minutes starting at 5am after not letting get to sleep until 1am, at least she left at 7am and the day nurse knows me.  
It’s been not bad at all. No illness or fevers from infections. I’m just leaking out of one more area on my body that’s not supposed to. The JP drain spot didn’t heal and it also didn’t open up to let that collection out so it made its own way through the midline scar. That absolutely is not my belly button. 


That cantaloupe is now gone, est 600/700ml came out of it through the midline incision

Reply to Abefroman1969

Jeez Paul, must have been a relief when that massive cantaloupe collection collapsed.  Hope the rest of your cottage stay goes OK.

Reply to Abefroman1969

Good you feel ok - get some sleep now - and kudos for getting such a clear selfie!


Oh Paul,  I wish you could catch a break just once!  You have had to deal with so much.  I hope that now, at least, the worst is behind you and you are getting the help and support you need.  Get home soon.  We are all here for you.



So my nurse from last night is back, she was like I’m gonna take down my saline bolus….

My what? I told you both you and Dr. Wang last night I didn’t feel comfortable being pumped full of fluid as that and TPN are what led to this discovery and confirmation of fluids. We agreed I would get no more than 50 ml per hour.

”Oh yeah but because you BP was low Dr. Wang ordered a 250ml one hour bolus” so the nurse and overnight attending who QUITE CLEARLY didn’t read my chart overhydrated me and ruptured my skin. 

So the throat punch is looking more and more like a possibility tonight. 
This is why I don’t like teaching hospitals dammit. Asked another Nurse to please get mine about 45 minutes ago, nothing. The night shift around here need lots of help. 


Now I have a private room again, finally had a decent roommate so I knew it wouldn’t last. 
I now have MRSA, when it rains it pours I guess. 

Reply to Abefroman1969

😢 Ugh, you have been through enough!


Goodness! You have been through the mill. Forwards, backwards and upside down😱 I am so sorry you are going through all of this. It's unbelievable. Sending you tons of good healing vibes and prayers for a fast recovery 🙏💗


Paul I am so sorry for what you went through. I hope by now that you are feeling better. If you don't like or trust your doctor, I highly recommend that you look for another one even with a different hospital or doctor's group. I am now on my 3rd gastroenterologist within the last 2 years. I was and am having excruciating pain and the first two kept saying that they can't help me because it's scar tissue. I can't accept that a doctor can't help me stop my pain. On the 14th, I am having a sigmoidoscope through the stoma as well as endoscopy. My ilieostomy is from chrones from 50 years ago and only in last 3 years I have been having pain. I don't think my chrones is active now.

The point is that if you can't trust your doctor and don't like what they are saying, move on. Your life depends on it!

Hope you get better soon and stay well.


Thank you Redondo, the thing is I do like my doctors and they are the best in town. I’ve fired so many GI docs it probably set some kind of record. I’m just a very complicated case. I’ve been an absolute jerk to my docs and they haven’t fired me and I’m thankful for that. I appreciate what they do and that when I blow my top they actually pay attention. 

When I did start looking for new docs and started looking around for new GI doc and surgeons I was constantly referred to the ones I currently have. I finally had to tell the docs that I’m not a patient to teach residents and PA’s with and it’s gone better since then.
I’m very vocal about my needs and that I know my body. In fact the surgeon just stopped by and attempted to take credit for my admission, I reminded him that he thought I had a hernia again and told me to wait and that it was me who demanded to be seen/admitted immediately, he didn’t like it but he heard me. I do have a good relationship with them and changing doctors now would be a very bad idea in my opinion because of the complexity of my case and I don’t have time to wait to be seen by someone new only to have them whip out the Crohn’s playbook and start again at the beginning. 
I’m in very good hands I just like to bitch about my condition. 
This site and people like you have really helped me while battling my health and I can’t thank all of you enough! 


Hi does anyone get pain from disconnected J pouch please 


Being released from Hospital in about an hour!!! 

I couldn’t do this without you all, I REALLY appreciate your support.

Going to my sisters house have VNA set up for her house this time. 

Reply to Abefroman1969

Excellent news 🥳! I'll be taking deep breaths with you!


Yay! 🥳👍🌻🤩🦙✨❤️

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