Hello there
Having had what I consider to be a positive reversal, I thought I would tell you about my experience. You can find some positive stories about it on here but not enough.
I had my ileostomy reversed at the end of March this year, almost two years to the day after I had the ileostomy during emergency surgery for complications caused by an abdominal lymphoma.
I needed about half my colon removed, including the caecum (where the large and small intestine join), due to damage by lymphoma. Although they weren't sure if they could do that and reverse in one op, I woke to find out they had and was thrilled.
Post-op, the first few days I felt great - I realize now it was a lot to do with the drugs I was on. I had an epidural prior to surgery for pain relief post-surgery and had a button to release the drugs when I wanted.
After a day or so, I think, I was allowed to eat a little and was okay at first. A little bowel movement, but I used to occasionally pass a little stool prior to reversal and think now that it may have been content already in the bowel.
After about four days, I was vomiting anything I ate and so went almost nil by mouth as it seemed my bowel was not getting going - an ileus, I think. I was told it is common due to the shock to the bowel and should pass after a few days. I was terrified as I had been so pleased they'd managed to reverse and thought I would need a stoma again.
I also had a pocket of infected fluid in the abdomen and was in a lot of pain from that, so they put a drain in and after lots of foul stuff came out, I felt much better. The drain was in a couple of weeks or so in the end. I also had a Nasogastric tube to drain fluid collecting in my stomach. I didn't eat or have any food supplements for a couple of weeks and just as they were planning on adding some, about three weeks after surgery I think, although a bit of a blur now, my bowel finally started to get going.
By the way, get used to being asked ALL the time if you have passed wind!!
I started to eat again, slowly, and started to have some bowel movements and pass wind. Very weird after so long and was scared when I felt the need to pass wind in case of an accident! Couldn't really distinguish which I needed to do.
Bowel movements were very watery at first but did manage to get to the toilet in time. Luckily I had my own room with an en suite.
After a few days of that, I was allowed home for the day on Saturday and Sunday and managed okay but perhaps got carried away and ate a little too much. Lots more frequent bowel movements when I returned and still rather loose. Finally discharged four weeks after op although felt a bit sick on discharge day.
First week home, I could hardly eat and was constantly back and forth to the toilet passing liquid and lots of it every half hour at least. This went on for everlasting days and they decided I had an abdominal bug. A few accidents over that period but my toilet is downstairs so not a big surprise there. I had a few moments of regret at this point but persevered.
Things improved and I learned more and more what to eat and what not to. I was very careful when I went out as I would find that the urge to go would come on quickly and as my movements were quite liquid (mostly I think because half my colon was gone), I couldn't hold it very long.
Initially, I was going I think every couple of hours, always pretty loose, but this has lessened. I returned to work 8 weeks post-op (probably a little early but used up all holidays and sick pay and still covering from a year off sick).
I worked as a solicitor in a small office where we know each other very well so they knew that I may have to dash to the toilet.
Six months on, things have improved over time.
Now I go once in the morning, usually within half an hour of getting up. This is the most like normal but still a bit loose. I tend to need to go after I eat so go at lunchtime and an hour or so after dinner. In between meals, I probably go about once but this seems to be more mucus than stool, although it is worse to pass as more cramps. I have less urgency now most of the time and a little cramping which is a warning sign to go to the bathroom.
Fiber makes me have to go more often, quite quickly after eating. Tried bananas, for example, and passed it within half an hour. I avoid whole wheat and roughage but go for soluble fiber like oats in small doses.
I eat veg, fruit, and salad but limit the raw veg and fruit when out and about as it can pass more quickly. Apart from that, my diet is normal.
Occasionally I have to get up to use the toilet at night, maybe once a week.
I do not take any meds but have been prescribed loperamide to slow things down. This does work and I have used it but find I get bloated so use only if I am going out in the evening. When I take it, I don't need to go to the bathroom for the whole evening. Can get Imodium plus which does help with bloating too.
I got married in August and dosed up on loads of loperamide and was fine all day (no bowel movements after about 11.30 am), although like a balloon the next day. Worth it though! Couldn't have had my chosen dress with a stoma, that's for sure.
Part of my bowel habits may also be due to a rather large incisional hernia from just below my right breast to my waist which I hope to have fixed next year. If you are having a full incision, don't lift anything or exert yourself for longer than you think. My hernia developed about four months post-op.
All in all, I am much happier now as although I managed with the stoma, leakage and fear of leakage were constant issues.
I am quite windy at times and tend to go to the toilet rather than pass wind in case of an accident, more out of caution as I can tell the difference easily now.
I have a hot water bottle at home and work for comfort and to ease cramps.
I get occasional soreness of the skin on my bottom as my movements are quite loose at times but a little Sudocrem is all I use maybe once a fortnight.
I could have even fewer movements if I took regular loperamide but choose not to as my environment is such that if I need to go, I can.
There is a little more planning about when to eat if you are out and about but that was the same with the ileostomy.
I hope my rather long reply helps even a little. I am still improving week to week and expect the hernia op may help but definitely worth it for me. I suppose it depends on how you adapt to the stoma as it is clear some adapt or cope better than others. Perhaps that depends on how you were before the stoma in terms of bowel habits. I managed but there was never any question of not trying reversal if I could and am so glad I did.
Best of luck to you.
