Surviving And Recovering From Emergency Colostomy, Ileostomy, And Reversal: A Journey Of Hope

Question

I haven't posted much here in my seven-month journey as an Osteomate, but I have read a great deal. There is so much wonderful support here and, alas, much need for support.My colostomy was the result of diverticulitis, an exploding intestine, and a severe case of stubbornness while I somehow decided that intense pain would just go away...even though the pain got to the point where I had little realization of the passing of time. Were it not for my dear partner who stood over me and insisted (loudly and somewhat rudely, I thought at the time) I go to the ER, there is an excellent chance I wouldn't be here. The surgeon said there was 70% more infection than he had ever seen, that it was pushing on other internal organs, and that I had a 50:50 shot of living as I came in the door. Lesson: ignoring severe pain is really, really stupid.Two weeks in ICU, lots of morphine and some unforgettable hallucinations later, I found myself at home for a month. I have decent insurance, so I got a daily visit from a wound nurse who helped with the ostomy, and in-home PT. Hint: pay attention to the physios...it takes a long time to get your strength back, particularly in your legs. And the fact that they made a long cut in your abdominal muscles means the only thing holding you upright is your back muscles...which will start to complain about the additional responsibility!I had been asking since the ICU when I could go back to work, which my surgeon found amusing. He apparently knew what I was in for. Except when he asked what I did for a living, and I said "I'm a longshoreman". That's when I found out how few people know what a longshoreman is, so I had to admit to a sedentary office job, but that didn't buy me anything either. I don't have short or long-term disability, but at my age (67), that insurance would only have started paying for itself sometime after two months. If you are younger and diagnosed with diverticulitis, particularly with a family, I would suggest investing in that type of insurance. I haven't seen that many posts here from our US mates discussing the financial aspect of being incapacitated for so long, but it's as real a problem as the physical ones.My attitude toward the colostomy was probably colored by the fact that it could be reversed, although I can't say I found it all that bad. My son and his family live in The Netherlands and I took a trip there (I needed to see him and he needed to see me after Mummy's little Dance With Death) before the reversal. I had no problems with the bag or seeing to myself, none of the "It Leaked! It Exploded!" horror stories I read here. I was armed with my little blue card announcing that I had an exterior device, and went through security in the US, the UK, and The Netherlands. Some x-rays didn't even show the bag, and my only aggro was on the way out of The Netherlands, when some 12-year-old security chickie took me into a side room to "see" the bag. I pulled my waistband down to show the top of it, and when she indicated she wanted to see the whole thing, I gave her a withering look. She did not persist.Then came the time for the reversal. All went well until five days later, still in the hospital, when there was no BM. Also no temperature, chills, or any other sign of an infection until the bulby thing inserted into my abdomen had all manner of disgusting stuff in. Here comes the surgeon, we had another split in the intestine and when he explained what would happen and asked if I had any questions, I had only one: Why me? I woke up with an ileostomy. Damn. And they had to enter for the third time through the big ol' abdominal wound --- I told that surgeon to just install Velcro, but he wouldn't listen.Hated, hated, hated the ileostomy and am so grateful that it, too, could be reversed. I was emptying every two hours, it woke me up at night to be emptied, it filled with gas to the point where I considered briefly if a Macy's Thanksgiving Day balloon had managed to attach itself to my hip. Emptying was messy and splashback horrific. Cleaning and laundry multiplied. (shudder)The week before Christmas, I was able to have the ileostomy reversed. All went well, and a few days (and significant gas) later, I could proudly announce (to anyone who would listen), "Ik heb poo-oop", the phrase my Dutch grandson taught me as he had used it successfully during potty training!Recovery was, of course, faster but not as fast as I had hoped. The closure of the colostomy hole wasn't an issue as I was in the hospital and on I/V drugs. Moving with staples, as many of you know, isn't as much fun as one would think. And when he took them out! That was really, really sore for a few days. Odd that the last and quite minor bit was the most painful.As for recovery of plumbing activity, I had steeled myself for urgency, painful rectum, et al. BMs have been smallish, soft, and frequent but never a problem. Friends asked if it was weird after a seven-month hiatus. I allowed it wasn't as I had been successfully defecating for the previous 67 years.I see here that some people choose to not reverse, not wanting to go through it all again. Although I can understand that, the reversal probably won't be a problem and then (with the exception of my abdomen which looks like Amateur Night at a Quilting Bee) all is normal again.One thing I have said before here is that more people, understandably, post with problems than success stories. I had a little detour, but I still count it all as a success. And for those of you considering reversals, please know that a happy ending (no joke particularly intended) is possible!

izipizi · Answer

I'm up walking over a mile a day. No breakfast in bed. My wife took good care of me.

Puppyluv56 · Answer

Wow! You are doing great! Glad you have such good care! It matters! Breakfast in bed once or twice is always nice!
Always heard motion is lotion!
Great job!
Puppyluv

izipizi · Answer

Nausea seems to have passed. Lost 10 pounds. I didn't need to lose. Pain still a problem... Bag drainage a problem. Got new supplies today... much better than what hospital provided. More comfortable and not transparent. Still have a JP and 20 staples... coming out this week. Appetite improving slowly, hanging in there... Thanks

Puppyluv56 · Answer

Wow, you are moving right along!Hoping it continues to improve!Puppy

izipizi · Answer

Scheduled for reversal soon. Going for enema x-ray and sigmoidoscopy first in a few weeks for pre-op. Anxiety is building along with some anger and resentment that this happened to me after elective surgery for chronic diverticulitis. This has taken almost a year of my life living through this. Mentally and physically, it's been tough.

Puppyluv56 · Answer

Glad you are getting close to the reversal! I am sure emotions are running rampant. Voluntary procedure or not, it is nice to know you have an option to switch back to a normal life as you knew it. You will do fine and a few years down the road, be glad you did the procedure to cure the original issue. Sometimes it takes some wicked turns in life to get where we want to be! Mine has and yours has! Good luck with the procedures and surgery!

Pup

izipizi · Answer

Thank you for your kind words of support. Glad you are well.

Puppyluv56 · Answer

Thanks, Izi! I am here any time you need to talk to someone!Pup

Surviving and Recovering from Emergency Colostomy, Ileostomy, and Reversal: A Journey of Hope

Interesting Topics