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

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OrlandoNewbie
Jan 23, 2019 9:12 pm

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!

Puppyluv56
Jan 24, 2019 1:36 am

Wow, that is a great story because it did have a happy ending and people need to hear that, although there may be issues, a successful reversal with a happy ending is very much possible, and if given the chance, why wouldn't you opt to be normal again! Thanks for sharing your story!

Puppy

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izipizi
Mar 04, 2019 3:47 pm

I'm so afraid of what I'm facing: reversal of colostomy with temporary ileostomy and reconstruction of abdominal wall to repair incisional hernias.

OrlandoNewbie
Mar 04, 2019 7:14 pm

I can understand some trepidation, izipizi, as surgeries are not what anyone would call fun. I had a parastomal hernia that was repaired with the colostomy reversal, then ended up with the ileostomy, although unplanned. I did tell my surgeon he could start practicing his surgical skills on someone else...hell, he even took out my appendix as it wasn't doing anything except being a potential source for infection.

It's odd with the way these surgeries become our "normal". I hope you have a surgeon you like and trust; that makes the whole process so much better.

Getting my strength back has been the most daunting, but that's just age. I do feel the odd twinge because of all the scar tissue in there, but everything else is wonderful! Just think about getting out the other side and healthy. So many of our brothers and sisters here don't have that choice.

Best of luck!

izipizi
Mar 12, 2019 2:38 pm

Thank you.... How do you deal with the ileostomy and is it temporary?

 
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OrlandoNewbie
Mar 12, 2019 3:51 pm

My ileostomy has been gone since just before Christmas; I only had it for a little over two months. I was okay with the colostomy, but hated the ileostomy, although that was probably because I expected to walk out of the hospital bagless and ended up with the temporary ileostomy.

I found I had to empty the ileostomy about every two hours and that the need to empty would even wake me up at night. Because of it being higher in the digestive system, the output was more fluid and I experienced leaks, which I had not with the colostomy. One in particular freaked me out as I was recently home from the surgery and the leak spread over my long surgical wound (thank heavens for responsive home care wound nurses and Humana!).

Everything has been in working order since I left the hospital. I get twinges from the scar tissue, and I probably have five soft BMs a day, but they are kind enough to come on schedule. But to be 100% honest...I avoid looking at my abdomen (shudder).

Everyone's situation is just a little different, but I'm very happy with my decisions. Best of luck!

izipizi
Mar 12, 2019 4:32 pm

Thank you for your story. I have a feeling I'm not going to like the ileostomy either and will be looking forward to getting strong enough to get that reversed ASAP. By the way, how was the ileostomy reversal procedure for you?

OrlandoNewbie
Mar 12, 2019 4:55 pm

That was the easiest operation as he went in only from the stoma "hole". The surgeon said that from the beginning, that reversing an ileostomy would be the easiest.

When you know it's going to be reversed, you have a different attitude toward the ileostomy; you don't have to get used to it. It's still part of the healing process, though, so be patient!

izipizi
Apr 02, 2019 10:27 pm

Going in Monday

OrlandoNewbie
Apr 03, 2019 1:40 pm

Good news, izipizi! A big step on your road to recovery. Very best of luck and let us know how you're feeling.

Candles lit, live chicken sacrificed that all goes smoothly.

izipizi
Apr 03, 2019 1:42 pm

Fingers crossed, praying. Will let you know when I get home.

izipizi
Apr 07, 2019 6:27 pm

Prepping today... tomorrow's the big day. Scared but ready to do it. Thanks.

OrlandoNewbie
Apr 08, 2019 1:25 pm

It will be good. Remember, it's all healing and getting back to whatever passes for "normal" in this life from here on. You're in the stretch!

Scared but ready? I thought about that quote from the movie "Armageddon" when I went in the last time: "I'm great, I got that "excited/scared" feeling. Like 98 excited, 2 scared. Or maybe it's more. It could be, it could be 98 scared, 2 excited but that's what makes it so intense, it's so - confused. I can't really figure it out."

Know how you feel!

Puppyluv56
Apr 15, 2019 1:06 am

Hey, I have been out of the country but I hope you are doing well! Please keep us posted on your recovery as you feel able to post!

Prayers for a speedy recovery!

Puppy

izipizi
Apr 17, 2019 10:36 pm

Hello folks. I'm home post-op day 8. It was a tough experience, lots of pain and nausea. 9 hours of surgery to have colonoscopy, reverse colostomy, appendectomy, perform ileostomy, and then to have repair of incisional hernia. I am happy to say that my surgeons and their teams were excellent. Pain management team was okay too. This hospital was incredible and nursing was generally great minus one. I think it was actually tougher than I imagined. But I'm home, I made it. Looking ahead in a couple of months to the final leg of my journey. Thanks everyone.

Puppyluv56
Apr 17, 2019 11:38 pm

So glad to hear you are home and doing well! All surgery is tough, so please don't rush your recovery! Hope you have someone taking good care of you and you can milk it for a good while! I sure loved my breakfast, lunch, and dinner in bed when I was recouping! I tend to have to be up and going, so I milked it as long as I could stand being down! Lol

Keep us posted,

Speedy recovery,

Puppy

izipizi
Apr 17, 2019 11:50 pm

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

Puppyluv56
Apr 17, 2019 11:56 pm

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
Apr 22, 2019 6:50 pm

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
Apr 23, 2019 5:55 pm

Wow, you are moving right along!

Hoping it continues to improve!

Puppy

izipizi
Jun 23, 2019 5:04 pm

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
Jun 23, 2019 11:18 pm

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
Jun 24, 2019 11:50 am

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

Puppyluv56
Jun 24, 2019 5:18 pm

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

Pup