ileostomy – Journeys With Dave

Warning: as usual with my posts regarding my struggles with Crohn’s this post contains frank discussion of basic bodily functions not usually discussed in polite company. If talk of peeing and pooping make you squeamish, you may want to just move along.

Those of you have read my previous post know that I had gone into the hospital to have what the medical staff referred to as an “ileostomy takedown” or in other words, my internal plumbing was reconnected and all organs that belonged inside my body (the stoma, which was a portion of small intestine pushed out through my abdomen for the removal of waste via an appliance aka “the bag”) were put back inside. This is an operation I had been looking forward to. Even though the creation of the stoma quite literally saved my life, it was an inconvenience to deal with – some of the issues I have described in earlier blog entries.

So, how did it go? Pretty well actually. According to the surgeon the surgery could not have gone better. Unfortunately, this does not mean that there were no issues. The biggest one, from my perspective, was that the epidural given to me to control pain also caused an issue where I could not release my bladder. You see, the epidural provided strong drugs to my mid-section which essentially turned off nerve receptors. The good news is that thanks to this treatment I was up and around pretty quickly. The bad news, I couldn’t urinate. This led to not one, not two, but several different catheters being inserted into my uretha – an uncomfortable procedure at best and in my case painful as apparently one of the times my uretha was “nicked.” As bad as not being able to go was, the sight of blood coming out of where blood should never come out was a bit unnerving to say the least. Plus this caused some pain in my you know what, which prevented me from trying to go. At one time the urine back up was so bad that after one catheter I released 1.2 liters of urine. For comparison, the average male bladder maxes out as about 400 – 600 milliliters. My bladder was pushed to its limit. This extended my hospital visit by a couple days as they wanted to be sure that my urinary function was normal before sending me home.

Well, that and the unexpected vomiting.

The third day post-op my gut seemed to be waking back up. I didn’t actually pass gas or stool yet, but my bowel sounds were active. In fact, one nurse said my gut sounded “hyperactive.” Which usual meant that things were starting to move through my system again and my long unused colon was waking up (so to speak). Wrong. Just as I was about to try to eat some lunch my guts went into full revolt. And very much like the girl in the Exorcist I began spewing everywhere! Since I hadn’t eaten much what came out was a build up of gastric juices and other liquids. The good news is that I learned I could still move quickly despite any lingering internal pain, the bad news is that we discovered how much liquid I could hold in. Turns out, quite a lot.

After these two setbacks, things started to improve quickly. My bowels began moving on day 4 PO (post-op), pretty much pure liquid but I was passing stool and gas. My bladder kicked back in later that same day thanks to some Flowmax and the discontinuation of the epidural. So by day 6 PO I was able to come home.

Now, one day shy of three weeks post-op, my stool is still pretty liquid with signs of solids every now and then. Still going more often than I’d like, but it’s way more controllable than the stoma was – plus no more bag to change frequently and more importantly, no accidents since my surgery. My staples have been removed and my new scar is healing. I have a shallow hole where my stoma used to be which is getting shallower by the day.

Still several more weeks before I can lift anything heavier than a gallon of milk, but I can walk and stand upright. I even have permission to get on my exercise bike and next week I’m going to ask about being allowed to work from home so I can at least catch up on emails. Things are looking up and I have no regrets about undergoing the surgery.

Physically, I did lose some weight again through the ordeal and am now at about 190 pounds. The lightest I’ve been in some time. Given how fast food is still flowing through me, I may get down to the mid-180 range before things settle down. The good news though is that my bodyfat% seems to be dropping in relation to my muscle mass. So though I’ve lost some of both fat and muscle, the fat loss has been greater. I’ll be in a good position for rebuilding once I’m able to lift again.

About 3 weeks post-operation. My shoulders seem to have lost some mass again.

Arms are a little smaller and flatter, too. The shirt I’m wearing used to be much tighter and now I have the dreaded sleeve gap.

Onward!

If all goes well my life as an ostomate comes to an end on Tuesday, April 9th when my ileostomy is reversed and my colon starts to be used again as God intended.

I would be lying if I said that life as an ostomate was easy. There were many challenges, the most difficult and dangerous one being dehydration. In fact, I ended up in the emergency room and a several day stay in the hospital about two weeks ago because of the norovirus and the fact that I didn’t realize I was having diarrhea until it was almost too late.

I had noticed during the day that my output was hiring than usual and that I was thirstier than normal. Because I happened to be at a church conference I more or less ignored this and kept attending to the business at hand. I was drinking, but I didn’t take any additional loperamide HCI (aka Imodium) or other medications that might have slowed down the fluid loss. By the early evening I was starting to feel a little unwell. So, I had some applesauce and rice krispies. I ate a banana, I took the loperamide and drank more water. But it was too late. Chills set in and then came the cramps.

It started with a leg cramp and I thought I had been sitting in the chair funny. So I tried to walk it off. Then the other leg cramped up, then my abdomen – I realized something was horribly wrong and thought I might actually be having another heart attack. So I went to the nearest phone by my bedside and reached for it as I collapsed into my bed thinking “Oh God, this is it.”

I woke up next to my bed, phone in my hand and buzzing at me, items from my nightstand scattered on the floor around me. I was so out of it I didn’t realize that I had actually passed out. I managed to call my sister, who was just getting home from helping my mother – who had also fallen ill (we surmised later that we both caught the norovirus from the same source).

We got to the emergency department of the University of Michigan Medical Center quickly. In hindsight we probably should have called an ambulance as the cramps hit again and I passed out not twenty feet from the entrance.

Pro-tip: want to pass by the waiting room at the Emergency Department? Pass out in their parking lot. I was whisked in pretty quickly. After receiving the excellent care that I am used to from Michigan Medicine I was re-hydrated and my cramps stopped. No cardiac event, but my kidneys had shut down from the stress – that’s how badly I was dehydrated.

Moral of the story?

Ostomates – always pay attention to your fluid intake and output. This can literally be a matter of life and death.

Everyone else – for pity’s sake wash you hands after using the restroom. Norovirus is easily spread in the most minute traces of fecal material. This spread is easily preventable by properly wetting your hands, sudsing with soap for an appropriate amount of time (try singing “Happy Birthday” to yourself a couple times) and drying. When you skip this step you may think you are somehow avoiding germs by not touching things in the bathroom, but you are making the rest of us sick when we shake your hand or come in contact with you later. Especially those of us with lowered resistance due to a compromised immune system. Like all of us with Crohn’s, Ulcerative Colitis, and who knows how many other invisible diseases and the medications we are on.

Please, please, wash your hands. The life you save might be mine!

I’ve learned a lot during my time as an ostomate and I have a greater appreciation and respect for those who cannot have theirs reversed. I hope in some small way I’ve helped you to better understand this experience as well.

Onward!