Ileostomy Reversal - Struggling with Recovery and Seeking Emotional Support

Hello everyone: Tomorrow will mark one week since my ileostomy reversal. The week has been really difficult. Constant diarrhea, a butt on fire from all the liquid stool, and some pain where the stoma used to be. Just when I get cleaned up from a stool explosion and apply ointment to my skin, I have another blast of poop and have to start the whole process again. We're talking multiple times per hour. My surgeon's office said go on the BART diet so I'm eating white rice, applesauce and toast (allergic to bananas) but if it has slowed down the output, it's hard to tell. Not getting hardly any sleep because I have to get up so many times to go to the bathroom and I'm scared of soiling my sheets if I don't keep on top of things. Emotionally, I feel at the end of my rope. Having withstood chemo and radiation and the first surgery for the ileostomy, I'm not sure why I'm feeling so defeated now. Most everything has gone well and so far no sign of major complications. I'm not taking the stronger pain medication they gave me because I heard that Oxycodone can slow down the healing process. Tylenol is my only medication for now. I'm lying in bed at night feeling completely helpless and alone. I have a wonderful husband and daughters, but I don't like burdening them more than I already have with dark thoughts. How have any of you experienced the reversal process? Any thoughts on how to keep your emotions from running away with you?

Hello,

Hang in there. Takes time for everything to heal. Don't suffer alone. Involve your family. We all need a helping hand from time to time. I refused to have my colostomy reversed. I'm 65, and am okay with the ostomy. Plus, I didn't want further surgery and reversal complications. Let us know your progress. Everyone here has "been there" and fully understands your situation. Wishing you good health.

Dan

It will be ok ☺️

What type of connection do you have now? If your pain levels are high, it's ok to take the prescription pain med short term. The one you mentioned might help slow down your output as they are known for causing constipation. I was going to make a list of supplies that helped me for someone else, so I'll send you the same list. Foster babe is sleeping right now, so as long as he doesn't wake up, I should have it shortly - I'll message it to you. 
Gotta keep an eye on those dark thoughts, your family should know you're struggling. You're not a burden to them. They love you. After surgeries, I've found I go through a funk usually. After my colectomy, I was prepared for it and planned a trip to see some family in Chicago I hadn't seen in a while. But I wasn't prepared for the post-surgery complications of the reversal. I said yes when a friend asked if we'd provide respite care for a preemie foster baby since she was under my weight restriction limit. I'm not implying that's what everyone should do in a post-surgery recovery funk, but it helped me, gave me a purpose outside of myself.  Did your surgeon mention taking Imodium? All right, going to start working on that list. 

-Jodie 

I had a reversal 20 years ago after a total colectomy and J-pouch surgery because of pancolitis, so not the same reason as you, but I can tell you the first few weeks after the reversal were rough. Keep using the gel or paste to protect your skin and try to gently pat and not wipe for now. Oxycodone can definitely help slow your system down, but I understand your thoughts of it too. Sleep on disposable or washable chux pads, makes for faster cleanups in the middle of the night, and yeah, that part sucks, but it should get better quickly. I also was on a similar diet but also ate other thickening foods like creamy peanut butter and some potatoes and took Imodium for a while, but ask your doctor first to make sure those additions are okay for you. Good luck and hopefully you'll be doing better soon.

So sorry to hear you are struggling right now and hopefully it will be short term and things will improve. In the meantime, try to only let positive thoughts occupy your mind - I know easy to say hard to do but stressing only makes all things worse. Fighting depression is debilitating. I totally understand how you feel when it comes to worrying about family - this is the “mother” in you. We are built to worry about our family and not wanting to burden them but they must be put on the back-burner for now so you can heal. Try and divert your thoughts to things you find pleasant - knitting, music, a book on tape, TV comedy show whatever keeps your mind from heading to the negative side of life. Again, easy for me to say - but I speak from knowing depression and the darkest side of my journey so I do know of what you speak. Many hugs to you and feel better soon! jb

P.S. During my illness I often heard my mom's favorite saying in my head: “Smile and the world smiles with you, cry and you cry alone.” I made this my mantra.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Hope everything goes back to normal for you as quickly as possible. Since I have no chance at a reversal, my question is why do most experience the diarrhea once reconnected?

I'll second Alex's question. Does the diarrhea have something to do with bile maybe? I assume it's not diet. Maybe trauma from the surgery. Quite interested to know as my time approaches. Of course, I can ask my surgeon when I see him on 2 Oct. :-)

Daniel

Where's Gentlejohn when you need him?

I won't dare answer from personal experience because my body never does anything textbook. This might've helped me… idk…when I finally came home from the hospital I was on thickened liquids… so I pretty much ate ice cream for the first week or 2?  It took me 2 hrs to eat a small plate once I graduated to soft foods… that whole food aversion thing. So maybe I didn't have some of the issues with urgency early on like most because of the super super slow reintroduction to food? 

Thanks. Now I'm 10 days past ileostomy reversal surgery. Did you say it took several weeks to not have absolutely any control over bowels? Longer? I will follow your advice on self-care but it feels endless—the unrelenting emissions of stool and clean up and repeat over and over again. Surgeon's office keeps saying it's normal but it feels like a torture that will never end.
Apologies for the doomsday attitude but I'm struggling with almost no sleep and a mind that is racing with fears. I tried to have a conversation with my therapist a few days ago and couldn't because I had to keep running to the bathroom! Omg!

I don't know much about the reversal process but it sounds to me like your system isn't “waking up” to work properly and give you the control like we all used to have. Good luck.

Depends on what else was done during your ileostomy surgery, was your colon removed or partially removed? I had a total colectomy but if you have some colon left you should be having more solid stools by now or very soon I would guess. If no colon then it might take a little longer, but even then it will be hard till your stools thicken up some. Pure liquid stools are hard to control especially if they also removed some of your rectum. Were you doing any exercises to keep the muscles around rectum/anus strong? In between my surgeries the doctors gave me instructions to do exercises multiple times a day so I wouldn't lose any ability to hold stool in. If you haven't been using those muscles for several months they will atrophy without you noticing till you need to use them again. Yes it took me maybe 2 weeks or so to feel comfortable outside of the house but I had colitis for a decade or so before my j pouch surgery so I was already used to needing to know where every restroom was around me. Also I was around 30 when I had my j-pouch surgery and that might have helped with my recovery being young at the time. Did you ask your doctor about Imodium or Metamucil powder mix yet? They helped me get through the early part of recovery but everyone is different.

So I did remember to ask my GI Dr today… but here's the problem… I don't retain much of anything I hear verbally. The colon is supposed to absorb the stuff that makes it diarrhea-like, so those of us with no colon have a harder time with a reversal than someone who has a reversal with colon left. Making sense so far? Over time us no colon people's small intestine has to learn to absorb more and the ratios of salt/sugar matter in how we absorb. My GI Dr emphasizes low sugar a lot. When I was describing a day to him where I felt sick this week he wanted to know how much sugar I'd had. My colon had been completely paralyzed so my system was already running way slow which is probably why I had an easier beginning adjustment to a reversal than most people. Daniel, I'm sure your Dr can do a better job explaining it. Once it starts getting too technical without seeing it written or pictures I tune out. 😁

Thanks, Jodie. I have a list of questions for my surgeon on Monday's pre-op.

Daniel

Mysterious Mose -

Although I have decided not to do a reversal, I never give up on that option as a possibility - reading as much as I can about the procedure as well as the outcome. Hoping all your questions will be answered to your satisfaction and that you will share a data dump (hmmm maybe a poor choice of words) following your appointment. We'll be thinking about you on Monday. “Gin up” oops - “Chin up” you've got this! JB

Monday is the pre-op appointment. Surgery is the following week on Tuesday. I am planning on reporting my progress. As soon as I am able.

I just wanted to let you know that you are not alone. My husband had a reversal done on 9/22. He has experienced the same thing that you are going through. I am hoping that things slow down for both of you. Sorry for your struggles.

I'm new at this. My surgeon first suggested total colectomy but now after my case was reviewed by Penn Medicine tumor board (malignant tumor found in my ascending colon; I have UC, diverticulosis and family history of colon cancer). They said if a chromoendoscopy can determine that my sigmoid and rectum is in good condition then they would be willing to do an ileo-rectal (small bowel to rectum) surgery. I'm just wondering if I have a better chance of less diarrhea since I never had an ileostomy which was the first recommendation. I was hoping to just have a hemicolectomy.

My mother had this ileo-rectal surgery and had 14 years of diarrhea and loosely formed bowel movements and always irritated skin. I don't know how she managed. She didn't die from it but from renal failure. She could not retain enough fluids. She refused to drink water mixed with a powder called “questran”. It was a generic and she just refused it and didn't tell anyone. She was 82. I don't want this. It's not a good quality of life situation but I do have to choose what to do about my situation.

Marty, I had an abdominal colectomy so I have an ileorectal anastomosis. So far, I've done really well with it… but walking at least a mile/day, doing pelvic floor therapy in between and after all surgeries, figuring out what foods make things worse.. If I have something too sugary I usually get sick. Results seem to be pretty individual based… Reason for removing however much of your colon, type of reversal, how long the new connection had to heal before being put back into full-time use. For me, I knew I'd regret not trying, but I'm also still doing ok with surgery recoveries and know I can go back to a different type of ileostomy. 

Marty, this is a difficult decision to make. I am the same age as you and have had a complete colectomy leaving only the rectum. Therefore, I have an ileostomy. After much thought, research, and discussion with my family, I decided against the reversal. Part of the reason was all the unknowns, especially when I factored in my age. What you describe about your mother was one of those concerns. There was also the fact of always having to know where to find a bathroom, the likelihood of nighttime incontinence, and the likely sense of urgency at times when I would be traveling and not near a toilet. And then there was the surgery and recovery. I was septic when I had the original surgery and almost died on the operating table. My recovery was touch and go, and I developed pneumonia which damaged my lungs. A second case of pneumonia would likely leave me on oxygen for the rest of my life (I was a smoker for 47 years before quitting in 2011). Then there was the pancreatitis which was partly caused by my surgeon when he nicked my colon in a desperate race to retrieve my disintegrated colon and save my life. All that left my family gunshy about another surgery. So, my decision was to stick with what I know.

Hydration is an issue with ileostomy, reversed or not. Fluid and sodium intakes are crucial. One of my issues is that I have a sort of phobia when it comes to electrolyte drinks that contain salt. It's a long story and I won't get into it again here. Because of that, I tend to eat a lot of salty snacks like pretzels. I also use a lot of salt on my food. As I have said elsewhere, my wife no longer complains when I salt my cantaloupe. :-)

Anyway, I say all those not meaning to scare you off doing a reversal. I was not as concerned about the operation recovery as my family and close friends were. Other than the emphysema, I am in reasonably good condition for a 75-year-old male. I walk 3-4 miles a day, 7 days a week, and also was doing pelvic floor exercises during and in between those walks. I tell you all this as a reference to what drove my decision. In the end, I decided to stick with the known rather than chance the unknown. I have been a risk-taker all my life. Not this time. I can live somewhat comfortably with the bag. I am not so sure I could without it. But, we are all different. What works for one may not work for another. :-)

Daniel

Nice reply, Daniel. You touched on many important points.

Knitter, how are things going for you now?