Hartmann's Reversal: Symptoms, Side Effects, and Recovery Concerns

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Oh Me Oh My
Aug 28, 2023 2:40 am

I had a colostomy reversal June 8th. 1 year and 2 days to getting my colostomy from emergency diverticulitis bowel perforation, sepsis, c.diff....you name it I had it. 1 month in hospital and significant weight loss. My recovery and side effects are very different from this reversal surgery?? I was in hospital 9 days and recovery went well, successful. But almost 3 months later I have some unexpected side effects. I think what is called fecal incontinence? Very hard to get clean, skin gets raw and very sensitive and sore. My stomach is in weird bulges and with no significant changes to a very healthy diet and exercise plan (walk 60-90) minutes every day I have gained almost 15 lbs since being weighed day of surgery. The bloating and gas is terrible...especially from about 2pm on. It is making me scared to leave the house, nothing fits, and things are almost more unpredictable than before. Anyone relate? Am I being impatient with recovery time? The weight gain is really baffling me and messing with my head especially.

Beachboy
Aug 28, 2023 3:16 am

You should get checked by a doctor. A CT or MRI scan of your abdomen should be performed.

I have a colostomy from a punctured intestine. 6 months after surgery, I consulted with my surgeon about reversal. After a lot of thought and research, I chose to keep the ostomy. I was worried about negative side effects like you're experiencing.

If your side effects don't get better soon, and doctors cannot fix it, you're going to have a tough decision to make: Live with your new normal or seek to have the ostomy put back in. I know this is tough to hear. I hope you get better.

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Bill
Aug 28, 2023 7:30 am

Hello Oh Me Oh My.
Thank you for your post, which took me back a few years to rekindle my memories of faecal incontinence.
I am so sorry to hear that you are suffering in this way as it is extremely hard to manage this inconvenience. 
I tend to agree with Beachboy in that you may have to face some difficult decisions on this one.
Incontinence was one of the main reasons why I opted for a stoma, and continues to be my reason for not going for a reversal (as I feel that a reversal, for me,  will not resolve the original problem).
In spite of the adverse affects of having a stoma, I find it is far, far easier to control incontinence from the front than it is from the bottom & between my legs.
Meanwhile, I do hope you can find some solutions to your problems, and my thoughts and commiserations are with you in this difficult situation.
Best wishes

Bill
 

Reedie128
Aug 28, 2023 7:50 am

Hi. I had emergency surgery for a perforated bowel due to diverticulitis a year ago. Where they operated became infected, so they opened the wound up. I still have dressings on it a year later! I lost well over a stone in weight, about 17 pounds. I was in the hospital for 6 weeks. The consultant said we will discuss reversal soon, go through risks, etc. I'm 75 soon. Worried about it. I don't like the stoma. I don't think I'll ever get used to it. But I don't have many problems with it. Hazel

Ben38
Aug 28, 2023 8:50 am

A reversal was never an option for me so I can only comment on what I've read from members that have had reversals. From what they say, the problems you're having are normal at first and can be for up to about 12 months after reversal surgery.

I would speak to your doctor; some meds will probably help relieve a lot of your problems.

Hope life gets better for you soon.

 
Words of Encouragement from Ostomy Advocates I Hollister
Justbreathe
Aug 28, 2023 12:48 pm

I love this ostomy support group. People are kind and have great responses and input to each of our individual problems and the major stresses they present. The above comments are a good example. My first question would be, are you rushing things along? Only 3 months since surgery and you are walking 60 to 90 minutes. This seems aggressive to me, but I am a self-proclaimed wimp.

As often repeated, everybody is different. In my own journey (I have an ileostomy), my return to what I considered to be my “normal health” took a little over 2 years - a very long time of thinking there will never be a normal again. Your surgery was in JUNE! All of your issues are so very troublesome at this time, I remember those days well. Give your body a chance to recuperate would be my immediate response. Oftentimes not only you, but family and friends are in a hurry to see you feeling better and back to normal. At least that was my experience early on and caused additional angst - but only you live within your body and really know what you are experiencing and how far you should push yourself. I believe rest for a body (both mentally and physically) to have time to heal was key for me. Please keep us posted. Wishing you the best for a total and complete recovery.

jb

rlevineia
Aug 28, 2023 1:18 pm

Although I have an ileostomy, I had similar problems. U/C Crohn's, huge diverticulum in my sigmoid, colitis & bad hemorrhoids. Got C. diff from a colonoscopy. Pooped 16 times a day. Went from 183 lbs to 109. Mayo removed my colon & I kept failing. Second surgery stabilized me, but the surgeon kept my rectum. "You might want a reversal & use your rectum." 5 wks in Mayo & 3.5 mths in a nearby rehab. Pus drained from my butt for the next 16 mths. Had to take bleach (Dakins) enemas daily. Had bilateral kidney stones, so no fun reaching back. I had a virtual meeting w/ my surgeon. "Enough is enough! Cut it out!" He agreed & I now have just my stoma to care for. Every case is unique. Find the best source of info before you decide.

Syd34
Aug 28, 2023 6:15 pm

All of these scary Hartmann reversal stories frighten me. I have a temporary stoma due to a small biopsy colon resection went wrong about 20 months ago. I hope you get better soon. It is only early days; eventually things will settle down. That's what I've heard from some people on Colostomy UK site. Good luck.

DexieB
Aug 29, 2023 4:56 pm
Reply to Syd34

Scares me too, Syd34! I am in the same situation - sigmoidoscopy gone wrong - perforated colon, almost died. I get so scared of reversal reading the stories.....but I have read about a few that went well, so I'm trying not to let the scary ones get to me - it's hard!

Syd34
Aug 31, 2023 9:20 am

Hello DexieB, I saw your profile. This is exactly what happened to me. I contracted sepsis too after a resection went wrong. Please see my profile. I changed my surgeon and I am seeing the new surgeon on 11th September to discuss when I could have a reversal operation. Please be in touch and let me know of your progress. You are young and have a better chance. I wish you well.

DexieB
Aug 31, 2023 2:19 pm
Reply to Syd34

Syd34 I am so sorry this happened to both of us! The pain is still fresh in my mind as I am still recovering, and I am very scared of reversal - contemplating not even doing it...but I really want to be back to my old self too. I have an upcoming appointment with the surgeon who saved my life after my procedure went horribly wrong - I will meet with him on Oct. 25 to find out more about reversal. I met with him in July and he said 6 months was too soon because I had so much infection and inflammation from the sepsis that it wouldn't be a good idea to do it at 6 months. Part of me wonders if it will even be successful if I do it in the future - and I can't even think about more pain right now. Let me know what happens at your appointment on 9/11! Thank you!

Syd34
Sep 01, 2023 8:44 pm

Hi DexieB, mine started with a random colonoscopy in which a cancerous polyp was found in my sigmoid colon and it was removed. Everything was fine for 3 months. A further colonoscopy and CT scan didn't detect any cancer cells anywhere in my body but the surgeon insisted as the polyp was so close to the colon wall it's best to take a small piece of my colon and look under the microscope for any sign of cancer cells but they didn't find any. The operation went wrong, had sepsis and had an emergency second operation hence stoma. It all happened in January 2022, I might have a reversal operation sometime next year. I am so angry with myself why I didn't get a second opinion to see if I should've been monitored rather than a dangerous biopsy operation for nothing.

I am praying for all of us to have a safe and successful reversal operation.

Pirrip
Sep 03, 2023 9:12 pm
Reply to rlevineia

You should get a medal for enduring all that!

DexieB
Sep 05, 2023 3:00 pm
Reply to Syd34

Oh my gosh - such a similar story to mine. A small cancerous polyp was found in the sigmoid colon and removed during colonoscopy on Feb 22. The surgeon said he was going to discuss it with his colleagues, since even though it was low-grade and well-differentiated, there was some question about the distance of the polyp to the stalk and whether cancer cells could have moved through the stalk (it was a pedunculated polyp, hanging from a stalk). I met with oncology, who said there was really nothing else that they thought needed to be done. 2 months went by, thought I was in the clear but then I got a call to 'schedule my procedure'. I was confused, so I called the surgeon who did my colonoscopy. He said it was decided that the best thing to do would be to resect a small area to make sure there were no more cancer cells, because the distance of the polyp to the stalk mattered more than anything.

Did the procedure - no cancer, so was told the colonoscopy was considered curative. A few days later I went to the ER in excruciating pain - peritonitis, sepsis, emergency surgery to remove my whole sigmoid colon which was abscessed and perforated from the procedure. Ended up with a colostomy. 21 days in the hospital, high fevers, edema, etc.

Saw the surgeon who saved me recently - he thinks it's best to wait longer than 6 months for reversal due to all the infection and inflammation I had. He also said that was NOT the right course of action for the cancer, and he was so upset that he called the surgeon's bosses because they should have known better than to do a procedure that intentionally put a hole in my colon. I had been told it was very low risk for complications - the surgeon who saved me said it's greater than 10%. So I have been beating myself up on why did I not ask for a second opinion. I just blindly went along with it because I was terrified about cancer, was misinformed about the real risk, almost died and now my life has dramatically changed. So much pain and suffering, as you know first-hand.

Trying to find forgiveness for the surgeon but mainly for myself - it has been very hard. I think nothing of getting 2 opinions when I need a house project or car repair done but didn't think to get a second opinion when it comes to my health?! Crazy. I just think hearing that one has cancer puts a person in fear mode... I didn't stop to think it through. Please know you are not alone! Praying for all of us.

Beachboy
Sep 06, 2023 1:55 am

To all of you:

Reading about the medical incompetence & indifference that put your lives at risk, and caused so much pain and suffering... has me feeling extremely angry.

Intentionally putting a hole in the colon, claiming it's low risk! OMG... Perforation is how many of us ended up infected and hospitalized. Now living with an ostomy.

We joke about our stoma; give it a name. Deal with leaks, smells, pancaking, emptying. Unexpected noises, hernia, retraction, prolapse, and bag blowouts. Yet every day... we soldier on.

In the morning, as I cut my wafer to size, a thought plays in my mind: How I would LOVE to be normal again. Reversal surgery has that promise, that potential, of turning our ostomy into an unpleasant memory.

Good luck and God bless.

Justbreathe
Sep 06, 2023 10:58 am
Reply to Beachboy

So sad but true - "some" doctors can only see - opportunities such as money and more experience! jb

7dragonflies.hm
Sep 12, 2023 7:20 pm
Reply to Beachboy

May the good Lord bless you, Beachboy, and all of us. Your post brought tears to my eyes, very well said.

Footie97
Sep 16, 2023 10:12 am

Oh me oh my

 

I had a very similar story, ostomy due to ruptured colon, that surgery went ok. Reversal was a nightmare! 3 weeks in hospital 10+ days ICU, C. diff that nearly killed me, was hospitalized 3 or 4 times for C. diff. I lost 47 pounds from colon resection until discharge from hospital for reversal (180 to 133, I am 5'11”). I am more than 2 years out from reversal, things are still not normal. I did have 3 more open abdominal surgeries for adhesions/partial blockages. I still have bad gas pains, frequent diarrhea mixed with constipation. Things are getting better over time but very slowly. I contemplated returning to ostomy for a while, my Dr advised me to give it some time and overall I am glad I waited.
My advice is to give it some time unless an emergency arises, monitor food intake and try to find foods that don't agree with you. I cannot tolerate certain foods now that before surgery, I had no problems with. Always seek medical help if something concerns you. I have seen 3 different GI docs, 2 surgeons and they all agree that this is probably my new normal.

Good luck message me if you have any questions 

Footie

Beachboy
Sep 16, 2023 4:51 pm

Hello Footie97,

Thanks for sharing your story. What a tough, painful, uncertain medical journey you've experienced.

I hope you continue to recover.

Dan

DexieB
Sep 28, 2023 6:31 pm
Reply to Footie97

Thanks so much for sharing, and for the good advice! Wishing you well.

Greyhorsegirl
Oct 24, 2023 3:00 am
Reply to DexieB

I'm having an open reversal next Tuesday.
I had emergency surgery 6 months ago for a perforated colon.
I had it all: septic shock, pneumonia, anemia, congestive heart failure.
I'm doing great except for this stoma.
I have a great surgeon.
I'm still getting anxious.

Beachboy
Oct 24, 2023 6:04 am

Hi Greyhorsegirl,

Surgery is always scary. Wishing you a quick recovery, reversal success, and a future of good health. You've suffered enough.

Keep us posted on your progress.

DexieB
Oct 24, 2023 2:15 pm
Reply to Greyhorsegirl

Thank you for sharing your journey. I understand how anxious you must be... I'm not even close to reversal time, but it's always on my mind. I hope you will have a speedy recovery, as you have been through so much already! Keep us posted if possible!