Successful Ostomy Reversal - Progress, Hope, and Life After Surgery

September 28th, 2016
Hello all of you, it's CharK60 here to update my progress on my colostomy reversal. I'm afraid I have to eat some crow here for acting insanely and positively well when I last reported to you. I did have a wonderful vacation day and I was feeling better than I had in a long, long time and even being productive here at home. I'm not completely low down to the ground but I jinxed myself just like I usually do.
My surgeon had pretty much released me on Aug 2nd unless I had trouble with my dressing. Then about 2 weeks ago, the scab came off my surgical site when I took a shower. It was bleeding enough to go through a light dressing twice a day and it grew from the size of a grain of rice to the size of a pea which isn't a lot but I had surgery May 17th! That was a long time ago.
My birthday came and went (I turned 64! How can that be?) Then it started hurting and I felt weak again so on Friday a.m. I called my surgeon who was out of town then my PCP who I have an appointment with in 2 days. I admit I started to have a real panic attack. I had told myself to take it easy until I saw the doctor but it's hard to slow down when you've just gotten back up to speed and all I mostly do is housework, yard work, and I was walking to the store again.
The best I could do at that time was have a nurse check the labs I did for my appointment and she said there was no indication of an infection. There was a problem with my thyroid and I got a higher dose and that may be causing the weakness.
I haven't mentioned to you all that there was some irregularity in my heartbeat during my colostomy and I had to be cleared by a cardiologist to have the reversal done. The diagnosis is a left side branch bundle but I got to have my surgery. Out of the blue, he's decided to follow up on it and I went Monday for a mugga scan and they're already making appointments for me.
I suppose I'm in denial about having a heart problem because I can't grasp what it all means and I really can't stand the idea of more procedures. Which could be a pacemaker! Lordy, Lordy let me get through one thing at a time please! I was first tested for this in 1992 and was told not to worry about it.
So I guess the reason I'm reporting to you all is because it doesn't seem like it was necessary to be panicking at all when I spell it out to you. I feel I owe it to you to share because of acting so uppity about being well. I'm glad to get it off my chest and will keep you posted on my progress. Thanks for being here.
CharK60

Hello again, it's charK60, posting after I finally got in to see the doc. I had my reversal on May 17 and I am still bleeding from a tiny section where my stoma was. I had lab tests that didn't show any kind of infection in my body and prior to that, my surgeon would pop on the lightest dressing she had and tell me I should be back to normal, so when she released me on Aug 2, I was fine with that.

But it turns out there is a possibility of more invasive measures again. I have orders for a CT scan next week to find out where there is either a pus or gas pocket that won't allow my incision to completely heal. Depending on the location, I may have to have a surgical repair or an in-office procedure to drain the pocket under local anesthesia.

So here I was bragging about how good I was doing but not having any eyes on advice except for routine doctor visits.

Well, I'm glad to finally try to get to the root of the problem, though I am really wishing I can be well again. So that remains my main objective and I hope to do it cheerfully if I can.

Thank you, ****.

You will and you are doing well. Keep it going, I hope it heals soon. Good luck and sending positive regards your way.

Hang in there CharK, you'll get there. There is nothing wrong with being positive about how you were feeling. Glad to hear the doctor is checking things out with you now, and yes, please keep us posted!

Thank you again, Mrs. A! You are our cheerleader! Always glad to hear from you!

My Ostomy Journey: April | Hollister

Hello all! Sorry, but I've been too depressed to write, but how silly was that when all I needed was to read your posts to see I'm only feeling sorry for myself.

I found out that I have two hernias and have to have another surgery. One of them has fecal matter present, so she's paying attention to me now! I may have surgery as early as next week, which will be good so I don't sit and brood about it.

My surgeon is famous around these parts with her work with robotics, so I'm not too worried. I just hate going under the knife again and the preps and the nerve-wracking waiting! And yes, I know you all know what I mean, so why am I whining and crying?

This inertia that I constantly fall back into: is it depression or symptomatic, or am I just a hypochondriac?

Anyway, I see that hernias are not uncommon, and since I have a good surgeon and it will be same-day surgery, then all will be fine.

I don't know what this had to do with my leaking stoma site, but I'm happy to say that finally stopped.

And I can tell you what it is I'm worried about. She was unable to do laser surgery on my reversal because of scar tissue. I've read that the hernias were probably due to scar tissue. I was in surgery 2 extra hours, and she said she almost lost me because of heavy bleeding. Thank goodness it will be done soon.

Now that I got all that out, I have to get an attitude adjustment because everybody knows attitude is everything! So as a final note

Hi CharK,

Now don't let this get you out of sorts, you've won much harder battles my friend. This should be a walk in the park for you!!!

Seriously though, did you have to outdo yourself and have two hernias!! No, I'm just hoping to put a small smile across your face and let you know you will be in my prayers!

Just think, this time next week it will be all over and you'll be good as new!

Chin up my friend, we're here for you and you are in our thoughts!!!

Hugs

Mrs. A,

My thanks again. I'm working on it, kind of. Retreating with a good book and my little dog. Hanging in there.

Here it is 3 weeks since I learned I need hernia surgery yet no word from the surgeon giving me a date. Last night I went to Emergency in a lot of pain from hernia site.

I thought it was just gas, of course, and lay down for relief. It hurt to turn over but when I lay on my back I felt the hernia sticking out about an inch under my skin.

They sent me home because it's not an emergency until you are in dire pain like a heart attack. I've never had a heart attack and it hurt plenty to me!

Mostly I do not want to wake up with another bag!

My daughter called my surgeon who is out this week, of course, and they will try to get me on surgery schedule first of next week.

Yay! I have to live with this pain another 7 days and I wasn't given any guidance or even any info about it because I was gonna have it fixed right away!

How in the heck is a bm supposed to move through there? I'm worried to death and so tired of being disabled. Now I have to worry again about bowels and I'm on pain pills again, which makes it harder lol.

One kind of positive thing, in that it can be remedied, is my g.p. is upping my thyroid rx because I'm severely out of whack. That is probably the cause of my inertia and even moodiness but the low increments means it will take some time.

I don't want to beg for surgery, I just want to end all these problems and learn what my new normal will be. Yes, it's taking its toll on my overall attitude and the lines are deepening on my face.

How can I be optimistic and positive for anyone else when I'm so frustrated?!

CharK60

Hi all,

On Tuesday, I will see my surgeon for what should be my hernia surgery release, but I will follow up on the bleeding from my stoma scar that came up last month.

I saw my GP, and he says he's worried the whole scar could reopen by looking at the various spots that have been bleeding. It's shrunk down to an inch and a half now, but still....

However, I have made a decision to quit asking her to fix things. I say no more surgeries! The scar tissue is going to result in a permanent colostomy, and I do not want that!

I'm going along with my surgeon with any bandaid approaches she suggests and let time heal me the rest of the way.

Doing very well otherwise now holidays are over, and I still consider I've had a "successful" reversal.

CharK60

Hello all, I have not been checking in because my news is bleak. I began to have severe pain with a fever less than a week after my surgeon released me yet again.

Then 2 days ago, I checked in with the ER because a pale odorless fluid began to leak steadily and my surgeon's "out."

While I was in there, they were instructed by an on-call surgeon to pack the site, and since then, dark red blood is coming out.

It is the scar from my stoma reversal open to the size of a quarter. I'm going through packing and 2 gauze squares in an hour but have yet to see my doctor. It hurts so bad and scares me even more.

What is with these doctors taking in new patients when they can't service the ones they have?

I'm taking antibiotics and hoping that I'm taking care of myself as I would be getting in a hospital. Not that I want to be in the hospital, I just want to get well!

Thanks for listening,

CharK60

Goodness Chark,

I'm sorry you're having such a time with this. I hope your doctor gets a look at you soon and can relieve you of the pain.

Keep us posted.

Thanks, Mrs. A,

Seriously, I don't think my issues with the leaking stoma reversal were ever addressed since takedown last May! My surgeon released me saying "if you have any problems, call me," all the while I'm saying "I'm still leaking! It has never fully closed!"

I had the CT scan, but it was limited to the lower left quadrant, and when they saw hernias, they focused on that, not determining the cause of my leaks.

And this business of never being in the office and so saying I need to go to the ER is crap! I get to the ER, and they want to know why my doc hasn't done anything. Well, I just don't have the answer to that.

Well, I'm being squeezed in to see my first surgeon tomorrow, and I hope that goes well, but really they have to order tests to SEE what's going on.

I am just going to sit down and study the internet tonight and solve my own damn problems. Wish me luck, okay?

CharK60

Hi, it's CharK63 again, finally with a true success story.

It's almost my anniversary day from having my reversal, and I'm about to take another day trip to Santa Cruz Beach Boardwalk and ride a roller coaster again.

However, I did have my share of ups and downs in the process. After last reporting to you that I found out there definitely was something going on, I got a MRSA infection on my stoma site.

Must have had it all along, but the doctor was in denial or something because it took another CT scan and finally a test of the fluid leaking to get the diagnosis. I guess I had it the whole nine months I was complaining.

I went through a couple of prescriptions for Bactrim, and my stoma is now a closed scar for the last month.

I want to report that I'm now having to try to regulate my bowels again. With the stool softeners plus Miralax, I've been having accidents, and without them, I'm getting IBS symptoms again: not going for days, then spending a whole day in the bathroom with sweaty cramps.

I will try to figure it out for myself before I see the doctor in July, but I sure don't seem to have much get up and go yet. Or at least not the getting up part.

Thanks for listening to my griping again.

Charlotte

Hi Charlotte,

Keep at it, girl. You'll figure it out the best you can. Hope the doctor has some insight to share with you. It isn't easy to regulate your body, heaven knows we all try. Just remember to never give up. You can do it if you put your mind to it and, of course, lots of prayer. If getting up is the hard part, then lay there and remind yourself of all the things you need to enjoy. Maybe don't even think about it, just do it. Get right out of bed and don't look back. Celebrate the small steps, and soon you'll be taking bigger ones.

We're here for you!

Thank you, Mrs. A,

I won't be seeing my Dr. anytime soon, but you are right, I need to learn stuff about my new or "changed" body parts anyway.

I went to his office to pick up my written Rx for pain medication. His staff had me wait for quite a while to have me "sign" something.

When they called me in, they acted so odd and asked me to sign a pain management form, and I think they locked me in the room while I filled it out.

When they came to get me, they wanted me to submit a urine sample and wanted to hold my purse while I did. I told them no, and they warned me to get to the lab THAT day or I couldn't pick up the Rx form, and I'm not sure, but it felt like they were warning me about something else as well.

The lab they use closes early, but I made up my mind to stop the pain management since my MRSA is clear now and the meds would be cut off soon enough.

Mostly, I just don't like feeling as if I'm a criminal and already suspicious. I phoned the office and told them I elected not to pick up the Rx and that I hadn't made it to the lab. I hope I was just imagining implied warnings, but it doesn't really matter, does it?

I'm now free of the last remnant of my treatment! Yay me!

I'll just be holding my breath and hoping I get no more eruptions.

Charlotte

P.S. The roller coaster was great, except that I sat by myself, so I got shook up a LOT more than I expected. It only had a thin lap belt on old rickety tracks that normally sound more thrilling.

Good job, Charlotte, on getting off the meds. You're right to do so as life will go on better without them.

Hope you had a nice Mother's Day. Happy belated day to you!

I can only giggle about your roller coaster ride. You're braver than I am as I wouldn't get on one ever. I never liked all that banging around, and I usually ended up sick from it.

Mrs. A

Oh no! You picked the seat furthest back for the whiplash effect and kept your arms raised high throughout the ride. It's so much fun!

I got my driver's license back. I took all the tests and passed. Now I'm taking my grandson to and from school. Just for another week but it's good having to get moving at a certain time.

He will be staying with me when school is out and attending the junior high near me next year. He is my best buddy.

Doing better all the time. Thanks so much for your support.

Charlotte

Mrs. A

Happy Mother's Day to you as well! My trip to Santa Cruz was a gift from my daughter the day before Mother's Day so I got to spoil my mom on the actual day. It was great!

I got her a slinky red gown and robe set with a separate black summer robe. She loves red and she is styling now. She loves it!

My daughter and I on the Log Ride in Santa Cruz Beach Boardwalk on Mother's Day. Great time!

However, this weekend, my stoma scar started discharging again and I'm sure it's from MRSA infection.

I got the surgeon to order antibiotics right away so I'm not having the pain and fever. So I'm not laying around sniveling. Trying to keep up my momentum.

As soon as I say I'm doing well and hope it's cured, then I have a what? A breakout? Doesn't seem like the right term.

It's very discouraging, but what can I do? What I did do was email my surgeon all my vitals, my medicine changes, and expressly asked her to order the meds so I'm not getting sicker waiting to get into the office.

If I continue to be assertive, maybe I'll beat this down. Right?

Thanks,

Charlotte
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So, here I am one week following reversal. Yeah!

I feel so fortunate as I read others' posts, as I have no underlying issues and the ostomy brought on by diverticulitis. Had the bag since Feb 22 and reversed on July 10th.

No serious issues, some initial diarrhea but that is slowing down, the incisions the biggest problem. Reversal was planned to be laparoscopically but, as others have noted, too much scar tissue to continue during surgery. I ended up with three laparoscopic holes, the stoma hole and another huge cut from sternum all the way down to my penis. The recovery time is expected to be 6-8 weeks now rather than 6-8 days as expected.

This is only a problem as I work for myself, outdoors, as a professional land surveyor and am looking forward to getting back to work and generating an income again.

I have not needed Metamucil or the like yet, but am advancing my diet slowly back to normal and in smaller quantities.

My biggest daily issues are finding clothes to wear that don't irritate the incision, beltlines especially.

The regrowth of the hair across my entire chest, stomach and crotch reminds me of shingles.

Nervous about removing the bandages and taking out who knows how many staples.

My wife went through this some 20 years ago but has Crohn's and RA, so her issues were and remain quite different.

I know my trial will end well and soon, and I will always have a renewed respect for everyone who deals with ostomies from the patients to the medical staff. Thanks to the support of this site and those who contribute to what is such a personal journey.

Hi Charlotte,

Love the pic of you and your daughter. The look on your face would also be mine! Ekkkkkkkkkkkkk!!!!!

I hope by now the doctor fixed you up with the meds you need and that you're recovering nicely. Yes, my friend, you can and will beat this as you are a fighter and never look back. Give it all you got and keep fighting!!!!

Hi Melix,

So nice to hear you are doing well. Congrats on your successful reversal. Hope you continue to stop in and visit. It's always great to know how you're doing and your insight to what a good reversal is like will help others!

That is awesome.

Very happy for you.

And you have given me good encouragement for my surgery is not far away.

That is wonderful for you that things went well.....I had my bag removed and that was an easy time compared to the first original operation....question, it has been almost 4 years since the reversal ....do you ever feel pain in the gut area? I thought it might still be healing...I am trying to get into a colon doctor..I'm not sure if it is normal to still feel discomfort all around the stomach area.......it is always a reminder to me every day...and do you eat whatever you want??? 

Thank you and have a good day.....Susan

Thank you, Leanne. It's good to hear that you are doing so well so soon, even though there is more to go. I didn't expect to hear many testimonials of success here on this support site. Your response is encouraging to me, as I continue to research what a successful outcome looks like. I know that everyone's circumstances are different, so I hope to hear from others who can share their experiences as I work my way toward my own decision in the next few weeks.