Support
Recently discovered this site from searching for help on stoma problems and help or advice on having a colostomy reversal. I'm not the greatest individual on expression, so bear with me and I'll do my best to fill you in on my background and future concerns. April 2022 I was rushed to the emergency room For having severe abdominal pain, CT scan discovered that I had severe intestinal perforation and was leaking, they immediately rushed me in for emergency surgery, long story short, I was in ICU for 4 days and 3 weeks in the hospital itself because I was septic and it took a while to get over that. Doctor said I was in such bad shape that they had to do a total reconstruction. The doctor's, surgeons, everyone involved was absolutely fantastic and there's no doubt, they saved my life. Due to the severity of the damage they had to do a end ostomy and I've lived with a stomach now for about 9 months and have grown used to it. Now in 2 weeks I'm scheduled to have a reversal and I understand it is another major operation, that has me reconsidering whether or not it is worth it. You hear and read so many horror stories that I don't know if I should go through with it or stay with the bag,I'm in great physical health and the doctor is confident in a successful outcome. However, like most people, I have to read Doctor Google lol and the horror stories of take Downs and bowel incontinence forever,even some wishing they never would have done a reversal and stayed with the bag. I need help folks, Time draws near and I'm still uncertain.
Good luck with your decision… I’m 4 weeks now past my reversal and I’m so happy. I posted my journey if you are interested and a photo… we’ll be thinking of you!
John.
BACKGROUND:
I had emergency surgery due to a very large cyst on my colon. They removed the cyst and my “ravaged” (per doc) appendix and right ovary. I was so fortunate in that no cancer was present. I was told that a reversal, “in a couple months”, would be the next step. I was very happy to hear this and anxiously awaiting that surgery. Fast forward 2-1/2 years with no reversal.
RESULT:
This was one of the toughest decisions in my long, healthy, and active life (79 years old).
At first I could hardly wait to get my (ileostomy) reversal. Health delays and “signs” (wrote about this previously) led me to the decision to cancel my reversal. IIgnorance IS bliss and maybe I should have remained ignorant- but instead, like you, I started reading about reversal success and complications. I am still not sure it was the right decision but until such time as any emergency arises I am content with the status quo. Mainly because it is something I have learned to live with and I am grateful for my pain free and very near normal life one again. Also, I can multi-task - example - I can pooh and do laundry at the same time. In the meantime I do go around singing 🎼🎶. ARRIVEDERCI - STOMA 🎶🎶🎶 I find music and a little humor helps. jb
Hi Chuck, this is a tough decision for anyone - colostomy, ileostomy, bag due to cancer, bag due to UC or Crohn's. etc.. I'm a former j-poucher due to UC and that UC continued to affect my rectal stump and j-pouch. Went back to an ileo after having my j-pouch removed so now I have a lot less intestines to work with. I have friends who were reversed after surgery for colon cancer and their outcomes were much better; they have more intestines to work with. You have a colostomy, not an ileostomy, so you probably have a better chance at a better outcome. Get lots of feedback here and good luck with your decision.
You're log was awesome and detailed, It has helped me a great deal, we are almost exactly the same dates and had the same operation, You have no idea how much I needed to hear something positive, thank you so much. I do have a few questions if you don't mind, the little scars that were around the large incision, what were those made for. If I recall correctly my anus is completely intact, I'll know for sure next week when I go in for post op consultation. The other question, more of a concern for me, is having to live with my bowels never being normal again, has that been a problem for you. And of course I have worries on separation again after the surgery, I know I'm a mess, lol. Again, thank you so much, I feel that God has blessed me through you and your response to my concerns. Prayers for your continued recovery as well, God bless.
Hi Chuck, eefyjig is right. You do have a better chance of a good outcome with a colostomy than you would have with an ileostomy. Of course no surgery comes without risk. I was given the choice to have a reversal and chose not to. I have an ileostomy, and the chances of a good result are pretty iffy. I decided that it wasn't worth the risk and that I am quite satisfied with my quality of life right now. You need to ask yourself if you are happy with the status quo, and if it's worth the risk to go ahead with a reversal, keeping in mind that you do have a better chance of a good outcome. I would also add quite a bit of weight to the fact that your surgeon is very confident in a good result, that is if you are happy with your surgeon, and trust his judgment. Good luck with your decision!
Terry
Hey There!
I posted a handful of updates post my colostomy reversal in the forum section for reversals, so you can learn more about my process there.
I had mine done on 11/16 and I have had some issues, but it gets better everyday. The main thing at first was the frequency when you get started having movement is pretty intense - dashing for the toilet every 15 minutes. I will admit at first I thought it was better to have the bag then deal with all the pooping, burning and wiping. Having a bag was a ton easier than what I was dealing with in the first few weeks.
but, since then it’s gotten a lot better. Still not 💯, but so much better. I do not at all regret doing the reversal and I really had to get myself to a place where I didn’t have expectations of where I should be. I finally started looking back to pick out where my progress was actually happening. I see so much improvement I can be and am grateful for.
I learned a lot so far, like:
use A&D ointment or a barrier cream on your butt from the get go because no matter what you will need it and waiting too long means a bad case of burning baboon butt.
look for shea butter flushable wipes on Amazon. No matter how soft your TP, eventually it will feel abrasive to your skin from all the wiping.
Sometimes you won’t make it to the bathroom fast enough, so getting some panty liners - the thin, anti bunch kind - will save your undies from the trash bin.
NEVER risk a fart! Trust me on this one. It’s more like shart city. Again, panty liners will save the day.
While I love my team, I didn’t have any good advice on diet. It is pretty hard to walk into the pantry and just grab something that isn’t going to be a problem OR that tastes good in the first weeks before you can advance your diet. See if you can meet with a nutritionist when you are in the hospital for good advice on what and when.
you can take Imodium to slow the diarrhea, but you have to be really careful with that so you don’t get constipated. Ask doc for recommendations on using this.
If you are having pain, call your doc. I’m a good MN kid raised to not complain and I was having a decent amount of pain when I was first home. I finally called in and they thought it was my colon spasming and they gave me a med for that that worked really quickly. I felt dumb for suffering for so long before asking for help.
it will take a few months to get normal again. Mainly because nerves need to grow and knit and muscle memory needs to develop. My doc told me the colon is like a python that knows to expand and contract, but when you’ve had a couple resection points like I have that your colon is more like an open toilet paper tube, it will just take time.
lately I have been dealing with a not so comfy hemmroid situation. It totally makes sense for how many times I have visited the bathroom. I just bought medicated wipes and some preparation H with lidocaine in it. I realized today that maybe I should have been using medicated wipes preemptively to clean up after pooping and then just putting the cream on before going to bed. However, the situation is likely inevitable.
Eventually your poo will go from silty looking sand to having an actual shape to it. I was so grateful the first time I saw an actual poo in the toilet and this was about a week ago. Yes, it looks like little squigglies, but it is a sign that I am progressing.
As you start advancing your diet, try new foods from the safety of your own home. I ate some pepperoni pizza and within 15 minutes found out that was a really bad idea. So, when you do start getting out in the world, no adventurous eating!
Oh yeah and peanuts, which I LOVE, do not come out like smooth peanut butter no matter how much you chew then up. they feel bad coming out of a sore butt. 🙀
Hi, no problems… good questions. The large scar was the original emergency surgery and one little one was the stoma location. The five new ones were the reversal.. total robotic so less healing time. I had to sign an agreement that if robotic did not work, they would cut. (Glad it worked!).
Had my post appointment with the surgeon on Friday. Said healing is going well but don’t overdo it (as I feel great). I could get a hernia if I overextended it too fast. (Which I can’t sit still but I’m listening) Next appointment is in 8 weeks.
Bowels are about 95% there with the reduced anus. Still not trusting a fart! 😎
Ask away!
John
Good on you - sounds like you are doing great👏👏👏 and not to worry cause you know what they (whoever they are?) say
NEVER TRUST A FART ! This means you are succeeding 👏👏👏
I say it’s natures way of letting us know we are full of hot hair ! My bad (Mishegas - Yiddish for silliness - and yes Henry & Jo
I had to look that one up too🤣)
Hi Delso93! So glad to hear of upbeat reversal! I will look up your full account of it! I have one more test in Feb to make sure all is go for reversal...my ileostomy was supposed to be a temporary for 7 weeks back in dec 20...x-rays and cat scans along way showed I hadn't healed yet but last one was more promising. If Feb goes good my surgeon said my reversal "will be a piece of cake...it's a loop....like 30 min process"...I am scared. No two ways about it. Thank you for posting to help others! This site has been a Godsend for me for this journey... Celia1552
What a lot of great advice, Thank you for taking time out of your day to share that with me it really does help with my decision, too bad I don't have a couple of neighbors that's going through this lol
Hi elledubuque! Thank you for such a detailed post about your reversal! Hopefully I will be able to have reversal in near future. Got my ileostomy dec2020 emergency resection from diverticulitis...resection dec2 ...leaking and horrible reaction ... ileostomy dec8....in hospital over a month...fed by IVs...no family for support, friends battling cancer and surgeries of their own all in the height of covid...was supposed to be temporary but has taken me 2 years to heal...tests in Feb will confirm if I have totally healed...very nervous ...no down right scared about reversal as I do not react well to anesthesia....thank you for details on what to expect ...I'll stock up on depends, butt paste, wipes and etc! Thinking that $20.00 aftermarket bidet I installed several years ago will continue to be a blessing...lol...sounds like I might be putting out some fires.... Thanks again and best of all to you!! Celia1552
Hey Chuck,
I've had my ileostomy reversed on 14 Dec last year. The surgery process itself is simpler than previous ones, however the recovery can be a little bit difficult.
I recall it was a difficult for me due to BM's happening quite a lot and quite a lot of burning. I was in quite negative mood due to that and I thought this how I would have to live forever. But 1 month on I am happy I went and did it. No more burning. Bms have come down to 7-8 per day of course dependent on what I am eating also. The whole process of going to the loo isn't an ugly ordeal anymore.
Happy that I don't have the bag anymore. A week ago I finally got my energy levels back and started working. I am doing a very phyaicall job installing plasterboard.with mo problems.
Another concern after surgery is that I was lacking mood. I think this is also due to general anesthetic still present in blood for quite a while as well as pain killing medication side effects.
I was also on the fence aBout doing it. But finally just went with it and I enjoy my life more than ever before. I am back to normal(New normal).
Do give yourself at least a month for recovery and watch what you eat - structure your diet as it will help you. Don't eat spicy. Don't drink coffe - swap for decaf if you love coffee ( 1month). Go gluten free during recovery. No nuts No seeds. When BM's start. Shower the bum and pat dry rather than wipe. And also use creams.
Keep in mind the organ has not worked for a while and imagine that you are a baby that is still learning how to go and that organ needs time to develop. Don't go too hard on loperamide or tablets that will form stool. Better to keep stool natural and avoid constipation as putting pressure on those muscles trying to go will make matters worse. Instead try to relax and let it all go out without flexing too much. Sorry about delicate details but i though that would be helpful. You will get to enjoy pushing out later on though without any trouble. Just mentioned that sort of for the first 2-3 weeks.
Also a great thing to have and I was going to install it is that korean bidet that washed and drys the bun after bowel movement. That would make everything just so much faster and tidier and less painful. And also apply creM as much as you can the first 3 weeks to minimize burning. Otherwise I didn't have any accidents or incontinence issues. Maybe just felt the urge to go for the first 3 weeks and that's understandable because the pelvic muscles are weak and need to be trained. Give it 3 weeks and you should be fine
Informative and helpful - your “on the job” training is better than anything a doc will share ! Thx JB
Hi, Maybe under my profile? Sorry, I should have posted it under a topic for others to read. I think… 😊
Hi Chuck, I don't know if you've come to a decision yet... I just had a reversal mid November from an ileostomy. Do you know what the goal is for you? J-pouch or something else? I have an ileorectalanastomis- John Hopkins has a good picture of what that looks like. I think I said to someone else on here that for me it came down trying because I could try it. With these conditions we have for one reason or another so much of our "choice" was taken from us and we've been forced onto this new path. I actually didn't research...my case is complex and there is no textbook that explains me so I didn't want to get scared by things I may/may not read online. I really trusted my colorectal surgeon at Cleveland Clinic. I did research her and Cleveland Clinic's ratings on these type of surgeries A LOT. After my first surgery, where this tiny powerhouse female surgeon took out my entire colon through the opening where my stoma was (my colon was 1.5ft longer than it should have been) I was like this Dr has got me. Even going into the reversal I told her I know you've got me during the surgery but I'm concerned about after...my concern at the time was having a roommate and having to share a bathroom lol. The surgeon thought it was so funny THAT was my primary concern. I should've been more concerned/ aware that I had a 50/50 chance of developing an ileus after. I did ok after my huge surgery in July, but the reversal in November I got really sick with an ileus. I think Cleveland Clinic is one of five hospitals in the country with a specific colorectal floor (you can double check that number b/c I'm not 100% I'm remembering the exact #) so I had specialized care. I was supposed to just be in short term post surgery stay, but I was tanking because I couldn't stop throwing up no matter what they gave me so my nurse moved me in front of the other people waiting for beds because he said I needed the care more- I didn't realize how poorly I was doing. Once I'd been moved and they placed an NG tube the nurses came in and told how worried they'd all been. I was like oh thanks waiting to tell me that. I had the NG tube for about 5 days? I was supposed to be NPO but I bargained for a popsicle per nursing shift. The worst part for me was the NG tube but that was due to the ileus. I'm also not textbook....they're not sure if it's a motility issue in my small intestine or my current aversion to food/things still waking up from surgery but I don't have to worry about using the restroom too often. Now if I start being able to eat more we'll see. I also had started pelvic floor therapy in-between the surgeries and I should be starting again, I just haven't called to set it up because I'm tired because I'm not eating enough right now. Before the reversal I was supposed to be walking 1 mile a day, it didn't need to be all at once but just so it added up to that. If you do end up deciding to go ahead with the reversal I can give you a couple ideas of items to have for after once you're home.
