A Lot to Catch Up on Part 3

.....Just after the struggles with the appliance, I had a follow up appointment with my surgeon. Remember when I said I had to record my fluid output? Well, it turns out, I was severely dehydrated. My kidneys almost shut down. Though I was drinking my fluids, it was just coming right back out. Emptying the bag got really old, real fast. Just so you know, the maximum output for a day is 1500 fl oz. I was over that almost every day. I felt like crap, but I thought it was surgery related. I ended up staying in the hospital again for five days. 

We get the appliance right; I get rehydrated with a much better understanding of what I am supposed to do. We go home armed with Imodium and Lomotil to help slow things down. 

Mid-March, I finally got to a point where, I could change out the appliance myself. I figured out that French fries really slow things down. We started to find some humor with the situation. I have to say this....it is very hard to be intimate when that dang bag is rustling around. If you take a plastic bag a crunch it up, it kind of sounds like that....what a turn off.😬

May 2, 2023 time for the reversal to reconnect and put everything back into its home. I will have a wound that looks like I took a bullet to the stomach. Everything inside is functioning properly. I should be able to return to work next Wednesday. There's one more minor detail. I now have to figure out why my hips and knees ache and aren't working properly.

 We now have a good plan in place to stay on top of this issue. The battle is not over and with Crohn's, it never will be. 

A Lot to Catch Up on Part 2

 ....as for me, I'm doing better now. For those that don't know me, I've had Crohn's Disease since the late 90's. I've had to bowel resections over the years. They have given me good results but they don't last forever. Crohn's comes back!!! Let's back track to July 2021....

 I go in for a CT scan, after drinking 3 bottles of the contrast, I had to go back the hospital because the contrast induced a flare. Gastro doc puts me on Prednisone. I was adamant that I did not want to be on it long term. Well, it turned out long term. At the same time, Humaria started to become ineffective. Skip ahead to February 2022....

I find out that my current Gastro doc left on permanent leave. Flare up's were starting to increase but I could manage them. It took two months for the office to get me another Gastro. He ordered another CT. I refused to drink more than two bottles. He puts me on another biologic and keeps the Prednisone going. 

I had an allergic reaction to the first biologic, so puts me on another. That did not really work and by Aug 2022 another hospital visit due to a flare up. Increased Prednisone again, with a third biologic. Guess what, late Oct 2022 back to the hospital again. This time a partial blockage with a flare up. For the first time, I had to have an NG tube put down my throat. That was a long 5 days. 

Dec 2022 Gastro doc finally admitted defeat and referred me to the U of M Medical Center. Mid-January 2023. We have a plan in place to get me back to right, but it was going to take a major change....

They could not do a straight bowel resection because of the length of time I was on Prednisone. My insides needed time to heal. So, the first surgery ended up with me having an Ileostomy. 

Here is this major change, and the one I feared the most. I mean I was pooping into a bag. How is that not a shot to the ego!!! My wife and I had to learn how to change the appliance out, record the output and stay hydrated. A few days later we go home. Three days after going home, we had to change the appliance. It took us three days and fifteen tries to realize we needed a new style of appliance. Once we changed, I didn't have to worry about fluid running down my side. We shed a lot of tears over the struggles with the first appliance. Talk about character building. But hold on there's more......