What to Expect After Ileostomy Reversal? Need Advice.

I'm sure this question has been asked many times....

As mentioned on my profile, I've put off getting the reversal done for around 5 years. Aside from being a bit unsure of the outcome, there were other circumstances too, unfortunately.

I was supposed to get it done about 2 years ago, but my dear wife of 16 years, Tracey, was rediagnosed with metastatic breast cancer in June 2014, but this time it was through her bones. Straight off, they said it was terminal and to expect up to 5 years.

She put up a hell of a fight, had 3 different chemo treatments, along with radiation and bone strengthening infusions. It looked like she was winning the battle, but then the cancer went to her liver.

A year and a half later, on the 10th November 2015, she passed away.

She told me last year I had to get the reversal done... obviously thinking about my future without her in it.

I'm normally a fairly private person, so it's difficult for me to share this with others I don't know.

And apologies for not smiling in my photo, unfortunately there's not a lot to smile about nowadays....

Any advice would be appreciated.

Hi Rednut68.

I had my reversal done a year ago this month, actually next weekend on the 25th will be the one-year anniversary for me. The surgery went great. I spent a total of 6 days in the hospital. I was afraid that the surgeon was going to keep me there longer for 2 reasons: #1, being on day 5 I still had not had a bowel movement but was passing gas, and he had told me I had to do 3 things: walk, be able to keep solids down, pass gas, and most importantly, have the bowels moving. On day five, I told him they still were not going, he looked at me with a slight smile as he knows I do not and if at all possible will never have another enema again; told me maybe he should order one (He got a good look for that one). He chuckled and said not to worry. The other thing was he asked me why I had not been bugging him to go home (the first two, even after the emergency surgery, I was bugging to go home early). I reminded him of my promise to both him and my husband not to bug, and he told me he liked that in me. I came in, got done what was needed, and then wanted out lol. So he was warned I would be doing it the next day to get out, I did, but when he first came in to see me before I left he asked how I was doing and I told him I couldn't stand the smell of myself. The area where the dressing was reeked, so he thought maybe an infection was starting. So he took the dressing off and took out the staples. He was still worried about it, so he had a student nurse bring in a dressing tray and opened the wound in my bedroom. He told me there would be a couple of pinches (the poor student nurse looked and said to him she never said a word as he pulled the skin apart). Luckily, there was no infection, but it meant I came home with a large open wound. My home care nurse came in the next day, looked at it, and said it would be healed by Sept 3 (it was healed a week early). My bowels have never worked so well in over 20 years. I go 4 times a day, and at first, it was every morning, but lately, it seems to finally be spreading out over the day. I had diarrhea for a day and a half the day after I got home, they started. The surgeon did send me home with 2 prescriptions, one for a laxative, the other for a month's worth of Dilaudid for pain. I only took Imodium for the first day and a half and have not taken anything since then. I do follow a diet set up by the dietitian, both to keep the bowels going and for a diet as well. I take Metamucil once a day, and the surgeon says that is a lifelong thing, but that's okay. I wear an abdominal binder during the day (I put my foot down when he said 24 hrs a day). I need at least a couple of hours away from it. The surgeon told me (now this is his instructions for me, I realize everyone is different) I am not to lift over 6 pounds, and that is a lifelong thing (that one is hard as it meant lifting our new grandson up was not to be) and no bending at the waist (so I have done more squats than I ever did as a skinny teen lol). I am back working in my flower beds, and we have gone out again to the theater and also to the movies. In Sept, our youngest son has booked his dad and me a cruise to what it called the 30,000 islands and 2 nights at a hotel, which I wouldn't have been able to do with the ileo as mine I was spending 90% of my day in the bathroom emptying it.

I have run into a problem with a bacterial chest infection. I have had a cough since I came home last year. My doctor at the time, though, had been hit by a car and was in the hospital herself, so I had to hold off until Oct. For several months, they were trying to guess. I have heard asthma caused by the surgery, allergies, then bacterial chest infection, which I have been on 4 different very strong meds, but still have the cough, which if it wasn't for a chance of getting a hernia from it, I wouldn't worry too much.

Most who see me can't believe I have had so much happen in the last 2 years, but I would do the reversal over again if it meant getting rid of the bag.

I will keep good thoughts going for you and for a speedy recovery.

Take care.

Cathy.

Hi Cathy,

Thanks for sharing your experiences, definitely sounds like you went through a hell of a lot though...

I had UC for 10 years before I got very sick and had my colon removed. I had said to Tracey, about a year before if there was a way of convincing the doctors, I would've had my colon taken out as it was a curse. So when they removed it, it was like a blessing for me....

Having the bag had given me some control back, I was able to empty it when I chose and not having my bowel dictate when I needed to go to the toilet anymore.... I guess this is one of the big issues for me, I'm hoping I don't lose the ability to control when I go

You mentioned about not being able to lift anymore than 6 pounds (less than 3 kilos?!) Why is that? My job involves a lot of lifting as I work with sheet metal on a daily basis so this could be a real issue for me....

Thanks again

Steve

Hi Steve.

First off, I am very sorry to hear about your wife. It is very hard to lose a loved one, especially to such a nasty disease. I lost my grandparents to it, and then I looked after the terminally ill for a couple of years, so I do understand a bit.

I will admit that the year 2014 was one I would like to forget, but sadly I won't. I came very close to dying and not even knowing I was that sick. If I hadn't gotten up when I did because of the pain and finally gave in and tried to call my husband at work (I ended up calling our son and told his wife to get his dad as he worked where his dad does, as I needed to go to the ER ASAP and I never ever say I need to go there), so little did I know they all came to get me. Guess it was whoever got here first, but my husband got here just as they were getting me ready to leave. Anyway, if I hadn't called him, he might have come home to find me dead. So yes, it was, as I call it, my year from hell.

Sounds to me like you have had it a whole lot worse though. I was lucky as I only lost a portion of the large colon down near the rectum. I still have my rectum, which is probably why things worked out so well for me. I have read about many who had the reversal and wished they never did. I spent most of my days in the bathroom emptying my bag for both the colostomy and then the temp ileo. I had our oldest granddaughter tell me one day how I spent more time in the bathroom with the bag on than I did before I got it. So although getting the colostomy did save my life, it took all my freedom from me, and for that, I learned to hate it with a passion, and I am being totally honest about that. I have had many who have the bag actually get upset with me when I say that, but it was the truth.

I was told to do the kegel exercises leading up to it as it helps tighten up the pelvic muscles as well. Since the last surgery, I still do floor pelvic muscle exercises (found them on YouTube, thank goodness for YouTube lol).

I think for me, the reason for not lifting over 6 pounds is because of where the colostomy was placed. You see, I am a short and fat lady (not proud of that and trying my best to change it). The colostomy was placed just below the middle of my breasts, maybe only a couple of inches below, and over the year, the stoma grew to, well, to put it politely, the size of a well-endowed male part (not kidding on that either), which when the surgeon saw it finally in Feb last year, his first words were, "Let's get it fixed." Before I left his office, the surgery was booked for Mar 19/15. I think if I had been left any longer, I would have been wearing a bag for life. So he told me that where it is placed and how he had to reattach it, I was not to lift over 6 pounds and absolutely no bending (toe-type bending). So I do a lot of squats now when I want to bend.

I think each person is different, and that is something you will have to talk with your surgeon about when you see him/her. I know on one group I was on, there was a man who was a mechanic on a naval ship, and he was back at work. So I think each person is different, and each person heals differently. I think with me, as for healing well, I still have the surgeon shaking his head in wonder as he says I should have died as soon as they opened me up, as I spent 4 days with stool floating around inside me, but when they did, there was none. He told me I should have been in the hospital for several weeks, maybe longer, but I bugged him so much I came home on day 12 and stayed by myself as my husband had to work. The home care nurses told me, after I asked why I kept hearing, "You are an unusual case," as I told them I was not the first person to have this, they told me they were expecting to be with me for 6 months or longer and left at the end of June. Last year, I spent only 7 days in the hospital and came home, was out working in my flowers in May, and back in the hospital for the final take down and came home on day six after the surgery. My wounds then healed fast, but I am still trying to get my energy back, but I could be my own worst enemy there as my husband and sons tell me, as I only rested for the first two weeks home and was back up walking through the house and then outside and haven't stopped lol.

Each person is different in how they heal, and some even are able to do what the doctors say. For me, as for the weight restrictions, as I can't work anymore (work injury related), I can pretty much follow at least that part anyway ;)

What I can say is I went in with faith in what the surgeon was like and have learned to have faith from the man above as well. I have had the surgeon, my family doctor, my husband's doctor (my husband was asking him if he knew why I didn't end up with blood poison), my dentist when I had to see him (he had to know before he did work on me), and last of all, my eye doctor because I ran into problems with dry eyes since the surgery, and they all tell me the only thing they can say is someone was watching over me that day. That was the only reason they can give me.

So go in with faith, trust that your surgeon is good, and from above :)

Take care.

Cathy

Colon cancer 2 years ago. Chemo etc. Had tumor cut out. Temp wore bag for 6 months. Had no issues wearing it. Everyone told me to have the reconnection. I did, it was a nightmare and I almost died due to obstruction due to scar tissue. Told doctor I wanted the bag back for rest of my life. Did so about 4 months ago. My wife then died from an infection. 2 months ago had blood clots in both lungs. Could not breathe. Had to drive myself to hospital. Told me I should have died again. One week in hospital. Found a fib along with massive clots. Put me on blood thinner Eliquis. Am gaining my strength a little at a time. Don't let anyone make up your mind about being reconnected. Most people are glad they had it done. I can also relate to losing your wife. Good luck Steve.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Honestabe,

Very sorry to hear about your wife passing along with your own troubles.

I understand how devastating it is to go through all this. We were lucky to spend 20 good years together, but you always wish there could have been more time, as we thought we would grow old together... I thought at the least I would be the first to go, but then there's a lot of things in life you have no control over...

Anytime you want to chat or drop a line, please do.

Take care.

Steve

We were married for 40 years. It's been tough. Driving myself to the hospital and having major surgery. Yep, like you, we thought I would go first.

Hi Rednut, my name is Marsha, and I have had my ileostomy for over 55 years, since I was a child of 15. Four years of fighting off ulcerative colitis was more than I could handle. Having the ostomy allowed me to go back to school and get on with my life. But the doctors had left the rectum and sigmoid colon with the hope that sometime down the road, it might heal, and I could be "reversed". Four years later, when I was 19, it was still diseased and had never healed. I wanted to be done with the medications, doctors, treatments, etc. and convinced my parents and doctors to remove the rest of it. The total colectomy (removal of the rectum) wasn't easy, and I had some complications... (but never looked back. If your rectum and sigmoid colon are healed, then it's up to you to take the risk to be reconnected. Both UC and Crohn's can reappear in the sigmoid colon... although Crohn's can also travel into the entire digestive system. My feeling at the time was "why mess with a good thing". I never wanted to risk going back to the way things had been. You don't say what the doctor's plan is for you? Is he just going to "reconnect" the ileum to the sigmoid/rectum? If so, you may be having multiple bowel movements a day... mostly after eating. My cousin lived with that for years... and it didn't go well for her. She eventually ended up with first a J pouch, that failed, and then an ileostomy. Some people have had good results with the J pouch, but others have had trouble and had to go back to an ileostomy. It's a difficult decision to make.

I'm sorry to hear that you lost your wife. I know how difficult it is to face these things alone. I was married for 25 years to a man who also had an ileostomy, but that didn't keep us together. We divorced, and he remarried, but died a few years ago from complications from his Crohn's... diabetes, kidney, heart condition. Very sad because he just didn't take care of himself.

If you have any other questions or would like to chat, please write. I get to your side of the world on occasion, as my younger son and his family live in Queensland, Australia. I check the travel brochures, with my eye on a cruise tour to NZ. Ireland is also on my "to go" list of destinations. I've traveled all over the US, cruised the Caribbean, toured Europe many times, and have been to Israel, Japan, China, and South Africa... and to Oz 7x. My wings have been clipped for a few years, but I hope to travel again soon. Best regards,
Marsha