Reversal Recovery - 30 Days Out and Managing Expectations

Heya!

It's been a minute so I thought I'd check in. I was having issues with a decent amount of pain pretty much anytime I ate so they sent me in for blood work. According to the surgeon, all looked good and as I wasn't running a fever or vomiting instead of booking a CT scan, they had me in for a lovely in-office exam.

You know the one, where your doc shoves his fingers up in ya, which is no special treat when your bum is primed and ready to win first place in a baboon look-alike contest.

The surgeon did feel that everything looked/felt on track so no cause for alarm. He felt the pain was likely due to my colon spasming, so he prescribed a med that would help with it. It did work very quickly and I take it on an as-needed basis for now. I think I've used it 4 times so far as lately the pain has faded back.

He did also tell me it will likely be months before I'm "normal" again. This is basically due to the fact that within a 6-month period I had a resection that became infected (I get bonus points for getting into the ER before going fully septic), then a repair of those ends and adding a colostomy for 6 months. Then the reversal. This means two areas of my colon don't really have nerves or muscle memory and it will take time to build it up. My tumor was also pretty low, so that connection means I don't have much of a lower runway anymore.

He also told me to think of my colon as a python that can easily tighten up and relax as food moves through my system. But now, my connections are fresh, basically meaning I've gone from sexy python to an open toilet paper tube until those nerves grow, knit, and the muscle memory starts to work.

My output is still super erratic. It can go from some pretty serious diarrhea to nothing for a couple of days. And while I'm terrified of blockages, not pooping for two days is kind of a treat as it gives my poor baboon ass a break. I just now started eating a more regular diet which will hopefully start to bulk my stool as now it's just runny.

I have left the house a few times for Christmas errands and to see a movie with my mom. But I definitely do not go anywhere where I do not know exactly where the bathroom is. I think the security team at Joann's Fabrics was excited to think they might have busted a shoplifter because I ran for the bathroom three times tonight. Side note, Joann's gets negative review points for having scratchy paper towels instead of toilet paper. Good thing I have a Costco-sized tub of A D ointment at my house!

I also carry a bag that has a change of pants, undies, and wipes because if I managed to shit my pants three times out and about with my colostomy, imagine what that would be like if the majority of it was in my pants VS my bag. Total Shit Show... and not the kind of fun to watch from the sidelines kind.

I definitely thought that by now I'd be me again, bugging my hubs to ride dirt bikes but I have just resigned myself to thinking that I won't be back to myself until this summer. I need to not expect too much and like all my big book friends say, take it one day at a time. There is something liberating about having no expectations and then seeing the baby steps of progress shine through here and there.

I know everybody is different, but I hope my updates are helping people who might be moving towards a reversal know a bit of what it has looked like for me. This listserv has been such a blessing to me the whole way through. It's good to be surrounded (albeit virtually) with such a fab community.

Until next time!

Elle D.

Thanks for the update... I guess I should not be stressed after less than 2 weeks. Keep us posted!
John

Elle D wrote : "I know every body is different, but I hope my updates are helping people who might be moving towards a reversal know a bit of what it has looked like for me. This listserv had been such a blessing to me the whole way through. It’s good to be surrounded (albeit virtually) with such a fab community."

Hello Elle D.

Thank you so much for your post. Just to let you know that it is not just those who are heading for a reversal who benefit from a well written exposition of their experiences. These stories are pertinent to all of us who contemplate the vagaries of having a stoma and sometimes need to make decisions about whether to have surgery or not.

Best wishes

Bill

Elle, your wording is awesome. One day at a time and you'll get back to your normal.

I love the way you write, Elle. I hope you get everything you wish for and are back on the bike soon.

Axl

How to Manage Emotions with LeeAnne Hayden | Hollister

So true!

Love your outlook and your humor! Thanks for sharing and wishing you a speedy and complete recovery! JB

I have to have a polyp removed before I can have my reversal. He sent me to a gastro specialist in Tyler and waiting for them to schedule me whenever they know the doctor's schedule. What a waste of a 3-hour drive and all day sitting in a huge hospital uncomfortable as hell. Almost a month later, I think these doctors are dragging this hell out...

They don't realize what a pain having to go back and forth all the time is. I just sat in the ER a few days ago for 8 hours waiting for a CT scan when I told them when I walked in that's what I was there for.

Mine is more like a rattlesnake. It gives me a brief warning before it unleashes hell on me ;)

Be well and keep up the fight. There's glory in it!

Ugh. That sucks. I do like my surgeon in Austin. His whole team is bad ass as well as the nursing team at the hospital he operates at. Dr. Thiru Lakshman with Central Texas Colon and Rectal Surgeons. Maybe it's worth the drive to have the care if he's in network.

I called them last Friday and was told to call back 2nd week of January to schedule my colonoscopy/polyp removal. Getting very tired of being shuffled around by so many people. When I went for a consult on the 19th of December, the PA was wearing street clothes with hooker over-the-knee thigh-high boots. Ugh, so unprofessional. Jeans so tight I thought I was on Hollywood Blvd.

Where is this office at?

UT Tyler. I hate that place... They shuffle you in and out like cattle...

You can tell they just want you and your insurance money...

Hello, I've been a member for about 6 months. So, long story short, I had an ileostomy reversed Jan 20. I spent 2 nights in the hospital, went home sore as hell, but feeling fairly good. The first 2 days I spent a lot of time on the toilet, but now it has settled down to 2-4 fairly normal BM's a day.
I was pretty scared, and many times considered not having a reversal done, as it seemed many failed. Now that it's done I am SOOOOO happy. It went better than I could have even hoped. I'm basically back to normal.
Reversals can be successful, don't give up hope. I kinda stole your thread, I'm sorry.

Hi, my mom is considering a colostomy reversal. She's had the bag for 6 months now. We had one consultation with a colon and rectal surgeon and have another one coming up in a couple of weeks because we still have so many lingering questions.

I was wondering how much rectum you have? The colon and rectal surgeon explained that when they take out the rectum, there is less storage capacity for stool. She said if they have to come down on rectum because of complications, there would be a small pouch, which can lead to issues with frequency of bowel movement, cluster of bowel movements, and incontinence. My mom has a decent amount of rectum so I'm wondering if she would have these issues with frequency of bowel movement etc? When we spoke to an ostomy nurse, she said sometimes people prefer a stoma that you can pouch over cleaning up diapers. My mom does not want to wear diapers. It's a really tough decision.