Ileostomy Reversal - Urgency & Accidents

[Arrack979]

I have a few questions and looking for any advice.

I had my reversal a little under a week ago this past Wednesday. Outside of bowel issues things have been better than expected. I woke up in my room Wednesday evening, the pipes started working early Friday AM and was home by that evening. Wound is healing great, pain rapidly - no pain killers needed, feeling spicy and ready to take on the world except my butt won't let me.

Let me premise this saying that I have read many reversal threads on the boards, I know its early and I did not expect this to magically turn back to normal.

My issue is my concern over urgency and accidents. Many people appeared to have little to no accidents. My surgeon warned that I should not be suprised or worried if I had a couple accidents in the first couple weeks, etc. I always seem to have cramps right before the accidents and there is NO holding it back.

The problem is I have been having an accident or 2 every single day. The urgency is extreme and I literally need to scamper to the loo everytime - I seem to have no control on being able to hold anything back for more than 30-45 seconds, if that. I know it is early and things will progress but I am getting worried because I NEED to be able to return to work soon. I am able to work from home this week and 2 more after that, but after that I have to get back. I make considerably more than my wife and have no ST disability and traveling to/from client, holding meetings and presenting seminars, etc. is essential and I can perhaps schedule things to give myself one more week.

Question - How long did you have to stay on a low-fiber/residue diet? My surgeon told me 3 weeks to let the connection heal, etc. I have a feeling that adding insoluble fiber may help with both my urgency, frequency and control issues as it move to more solid stools.

Question - How soon before you were allowed to take immodium, etc.

Maybe I'm just venting and worried things won't progress fast enough. I know I'm frustrated since I feel so good otherwise and just want to move on from this and enjoy everyday the best I can. I always keep in mind that things look good and overall I am SO grateful to have a chance for a long life.

[aja1121]

I am looking forward to reading any responses you get. My husband will be at four weeks post-reversal tomorrow. While that the panicky feeling of fighting the urgency has definitely lessened, he is still having a BM every couple of hours around the clock. He has also had accidents, a couple that happened while he was resting/sleeping, and that concerns him a great deal.

His doctor has been slow to add meds so far. She gave the okay to add up to three tablespoons of Citrucel throughout the day. He found this did not make things firmer, or lessen the number of movements, it just made for a greater quantity coming out each time. Currently he is taking one tablespoon of Citrucel daily and two Imodium (one morning, one evening). Stools are more formed but still soft. He is going to try adding one Lomotil today and see if it makes a difference. He is also sticking with a low-residue diet at this point and making sure to eat a banana, oatmeal, and some toast every day.

Looking back over the past four weeks, things are slowly getting better, but not quite fast enough. He's very tired from not getting uninterrupted sleep.

[ozziej]

Sorry to hear that you're having such a hard time. I'm just over 8 weeks out from reversal. I'll preface my narrative by saying that I didn't have pre-op radiation, only had the temporary ileostomy for 12 weeks, and I don't have to worry about returning to work. From what I can gather radiation can make recovery more complicated as can the bowel being out of action for a long period. And I also think that stress can make the bowel do some interesting things.
So... I'm basically still having a low-residue diet but have been able to slowly introduce well-cooked broccoli, carrots, and baby beans, and butter lettuce, tomato and avocado. I have mashed potatoes with the vegetables and rice with the salad. If I skip the potatoes or rice my BM'S increase a lot. Pasta, and lamb, pork, chicken and fish fillets are all fine but steak gives me trouble. Breakfast is still boring old cornflakes and preserved fruit but I have been able to introduce multi grain toast instead of crappy white bread. I have probiotic yoghurt twice a day and also take a probiotic supplement.
My average daily BM'S for the last 8 weeks were 13, 9, 10, 10, 8, 8, 6, and 6, so you can see that there's been a steady decline. Looking at my diary, my BM'S weren't formed until day 8. After that the urgency definitely decreased and I have pretty good control now. I did pelvic floor exercises before and after reversal but still had a few accidents. I bought some incontinence undies for night time so I could relax and I still wear them (not the same ones obviously ). However it's not unusual for me to have to go to the loo a couple of times over night.
I saw my surgeon at 4 weeks out for a review. He suggested that I take loperamide but as I had severe constipation prior to dx I only took the meds once for the flight home. Seems that opinions differ on when to start meds so perhaps you could ask your surgeon?
Like others on this site, when I reviewed my diary I could see that after the first 2 weeks most BM'S and clustering were after breakfast or dinner but lunch was okay so work might not have been affected. Hopefully that will be the case for you too.
Keep us posted re your progress.
Best wishes
Jan
PS. Aja, two things I discovered that might help your DH get a better sleep. Maybe have his main meal at lunch rather than dinner, and avoid having hot drinks in the evening as they seem to stimulate the bowel. Hope this helps.

[jillbugs4110]

6 months it gets better off and on but the 6 month mark you feel happy like it was worth it. I tried different remedies but often it controlled me. Sorry hang in.

[Arrack979]

My one big question is about fiber. Is it too soon to start slowly some psyllium/citracel is I am supposed to be on a low-reside diet?

[aja1121]

Husband's surgeon gave the okay to add Citrucel fiber supplement at the two week mark, even though still on low-residue diet. She said to start with one tablespoon and see how he responded.

[Daisymae]

It took me a good 3 months to feel comfortable leaving the house for long periods of time, and even then, the first thing I looked for when I arrived anywhere was the bathroom. I remember being at the park with my 2 year old, pushing him in the swing and pooping in my pants. But things did get better with each passing week and by 3 months I was good to go. No regrets and mostly "normal" bowel function 3 years out. I tried immodum but a poster here made a suggestion that changed my life and that was to take pain pills to slow things down. I didn't take them all the time but as needed and boy did that help. It really will just take time. And there were definitely foods that set me off. Salads and red meat for sure. Now fine but then sent me running... 4 months post reversal I did an Olympic distanxe triathlon and 15 months later had a beautiful baby! Hang in there and know it will improve gradually. Good luck!

[ozziej]

Just wondering how Arrack and Aja's DH are getting on post-reversal. Hoping that things have settled down for you guys.
cheers
Jan