How are you doing after ileostomy reversal?

[530jgs]

airmid, i will be having my reversal in three weeks. i had stageIII rc . i am so lucky to have found this website before the reversal. i have been following your thread. i hope each day gets better. i will look forward to the night i get up to take a pee and not empty my bag. hang in there. it looks like most of us get through this...jim

[Jon Olis]

I'm joining this thread late but wanted to offer my advice. First off, I'm different. I have my rectum but no colon. The small intestine is attached to my rectum so I wanted to point that out. Without a colon I got best results from eating soluble fiber as others have said. Anything to firm things up helps with control too and it minimizes the bathroom visits where its not very productive and you're back there again in 30 minutes. I don't anyone has mentioned metamucil wafers yet. I take one wafer with each meal. This stuff is super soluble fiber. More so then any regular food and it helps me a lot. I go to the bathroom 3-6 times per day but I have no trouble going for 8 hours many times without a visit.

[Airmid]

Mar 22, 2010
Thanks SBL and Eric for your encouragement. I’m going to go back and read your thread on takedown again. I see my surgeon for the first time since surgery this Friday so I will ask again about immodium. I’m going to try adding more soluable fiber too. I’ve downloaded a copy of the MD Anderson Bowel Management Program and hope that I’ll find some ideas on how to manage my bowels because at this point I think my bowels are managing me. It does make more sense to track my progress on a weekly rather than a daily basis via my food/bm journal. It hasn’t even been a month and I can see improvement today that I did not have the first week post surgery. It is so reassuring to know I'm not alone as I go through these changes!
Airmid

[Airmid]

OOPs Already posted above.
Airmid

[Jon Olis]

For me things continued to improve for over a year after surgery. Just an FYI.

[Airmid]

Sunday Mar 28, 2010
It's been just over a month since I had my reversal surgery. I had my ileostomy for 1 year and eight months--quite a bit longer than some of the people whose experiences I've read about on this site. I had to go through two surgeries, radiation, chemo and abscess resulting from surgical complication prior to getting the reversal.

At times, I still have the sensation that I have my ostomy pouch is on my belly. Like at night when half asleep I roll over in bed onto my left side where my pouch used to be and I still think I have to be careful not to squash the good year blimp. I guess it must be phantom pouch. Weird!

I’ve been eating just about everything, but have been staying away from the gas producing foods. I checked out what foods have the most soluble fibre and have been adding more of these into my diet. I continue to keep a food/bm journal. I've started getting out to go for short walks, but still want to stay close to home and my ivory throne. Started back doing my yoga practice. Life does seem to be looking more normal than it did a few weeks ago.

Up until yesterday I'd been making trips to the ivory throne about 10 to 15 times a day on average, morning noon and night. Last Tuesday was a killer day for me--made 25 excursions to that throne and did I have major butt burn! I think it was too much tomatoe juice or the green salad I’d had the day before. The next two days were the more typical 10 trips a day. Friday I saw my surgeon and he wanted me to start taking metamucil. After reading other's takedown experiences, I was planning to start taking it anyway. I took one dose yesterday morning and what a difference it made. I was able to stay out of the bathroom from 7 am til 5 pm. Today I took one dose of metamucil (1 rounded tsp in 4 oz water) and haven't been in the br since 8 am and it's now 10 pm. I think I may start calling it miracle metamucil. Just hope I don't swing the other way and get constipated.

Previously my surgeon advised me not to take immodium so again I asked why. He said he did not want me to take it because I might have good days while taking it but as soon as I stopped I’d pay with some really bad days. He did say that it would be ok to take it occasionally to give myself a break (I guess from 25 bms in a day).

I read over the MD Anderson Bowel Management program and learned some interesting things. It would be really nice if I could train myself to be able to trigger bms at convenient times of the day. Anyone been able to do this?

It has been a great education to read the many of the threads started by others on takedown/reversal experiences. I give special thanks to my cheering section--those who have so kindly responded to my questions. I hope this thread will help someone else too.

[Surroundedbylove]

Previously my surgeon advised me not to take immodium so again I asked why. He said he did not want me to take it because I might have good days while taking it but as soon as I stopped I’d pay with some really bad days. He did say that it would be ok to take it occasionally to give myself a break (I guess from 25 bms in a day).

I read over the MD Anderson Bowel Management program and learned some interesting things. It would be really nice if I could train myself to be able to trigger bms at convenient times of the day. Anyone been able to do this?

Yes, I have been able to trigger bowel movements in the morning and am working toward training for a more consistent evening time. The trick with the morning time is that enough needs to have built up in my system overnight to be able to have a good bowel movement in the morning. That means that the evening time needs to be slow enough on the peristalsis. If you read my thread "Takedown Info" (sorry it is long), the magic breakfast for me is within about 30 minutes of getting up in the morning to drink 1 - 2 oz of prune juice (very small amount), have a large bowl of oatmeal with either apples, dates, or some other soluble fiber fruit cooked into it, an Activia yogurt, and then drink a cup of hot coffee or two. The prune juice starts to trigger peristalsis. The oatmeal and soluble fiber fruit trigger a push down in the colorectal tract, and then the hot coffee encourages everything to move along. Then I try to walk - either around the block, around the house, etc. - movement of any kind helps.

[Jon Olis]

Sunday Mar 28, 2010
It's been just over a month since I had my reversal surgery. I had my ileostomy for 1 year and eight months--quite a bit longer than some of the people whose experiences I've read about on this site. I had to go through two surgeries, radiation, chemo and abscess resulting from surgical complication prior to getting the reversal.

At times, I still have the sensation that I have my ostomy pouch is on my belly. Like at night when half asleep I roll over in bed onto my left side where my pouch used to be and I still think I have to be careful not to squash the good year blimp. I guess it must be phantom pouch. Weird!

I’ve been eating just about everything, but have been staying away from the gas producing foods. I checked out what foods have the most soluble fibre and have been adding more of these into my diet. I continue to keep a food/bm journal. I've started getting out to go for short walks, but still want to stay close to home and my ivory throne. Started back doing my yoga practice. Life does seem to be looking more normal than it did a few weeks ago.

Up until yesterday I'd been making trips to the ivory throne about 10 to 15 times a day on average, morning noon and night. Last Tuesday was a killer day for me--made 25 excursions to that throne and did I have major butt burn! I think it was too much tomatoe juice or the green salad I’d had the day before. The next two days were the more typical 10 trips a day. Friday I saw my surgeon and he wanted me to start taking metamucil. After reading other's takedown experiences, I was planning to start taking it anyway. I took one dose yesterday morning and what a difference it made. I was able to stay out of the bathroom from 7 am til 5 pm. Today I took one dose of metamucil (1 rounded tsp in 4 oz water) and haven't been in the br since 8 am and it's now 10 pm. I think I may start calling it miracle metamucil. Just hope I don't swing the other way and get constipated.

Previously my surgeon advised me not to take immodium so again I asked why. He said he did not want me to take it because I might have good days while taking it but as soon as I stopped I’d pay with some really bad days. He did say that it would be ok to take it occasionally to give myself a break (I guess from 25 bms in a day).

I read over the MD Anderson Bowel Management program and learned some interesting things. It would be really nice if I could train myself to be able to trigger bms at convenient times of the day. Anyone been able to do this?

It has been a great education to read the many of the threads started by others on takedown/reversal experiences. I give special thanks to my cheering section--those who have so kindly responded to my quesions. I hope this thread will help someone else too.

Glad to hear the Metamucil is working so good for you. I personally get much better results from the wafers then I do the powder. One wafer with each meal (a packet has two wafers).

[Airmid]

Hi SBL-I did read your thread on Takedown and it was really helpful to me in understanding how my bowels work in relation to what I eat, exercise, etc. It looks like it's been about 5 months since your takedown and I feel encouraged knowing how well you are doing at this point in time.

"The trick with the morning time is that enough needs to have built up in my system overnight to be able to have a good bowel movement in the morning. That means that the evening time needs to be slow enough on the peristalsis."

Do you slow down peristalsis in the evening by eating lighter, being less active?

Next time I go grocery shopping I'm putting prune juice on the list. Take the prune juice, eat the breakfast, take a walk and see what happens. Right now I am just so happy to be making fewer trips to the bathroom because of taking the metamucil. I really have been enjoying the rest from so many trips to the br.

Hey Jon-I'm putting metamucil wafers on this grocery list too. I expect the wafers are probably a lot more convenient. It amazes me how they help you considering that you have no large bowel. Having had the ileo pouch myself I know how watery the stuff coming out of my small bowel was. Those wafers must be super soaker uppers.

[Jon Olis]

Hey Jon-I'm putting metamucil wafers on this grocery list too. I expect the wafers are probably a lot more convenient. It amazes me how they help you considering that you have no large bowel. Having had the ileo pouch myself I know how watery the stuff coming out of my small bowel was. Those wafers must be super soaker uppers.

Yep, they help remove the liquid for sure. Not always but removing the liquid really cuts down on volume which helps for obvious reasons. Also adds an element of control.

The metaumcil also makes things a but more productive when you do go so you aren't back there again 30 minutes later.

[Surroundedbylove]

Do you slow down peristalsis in the evening by eating lighter, being less active?

Next time I go grocery shopping I'm putting prune juice on the list. Take the prune juice, eat the breakfast, take a walk and see what happens.

Hi there,

To slow things down I am careful with how much roughage (insoluble) fiber I eat in the evening or the combos I eat. For example, I try to have soluble fiber still and then follow that with insoluble. If the bowels start to seem a little overly active (even just one cluster - a second BM) then I take one Immodium to slow things down. That seems to work beautifully - the next morning things are quite normal. If the bowels get even more active I take two Immodiums but that's usually the max and I seem to only need that about 2 times per week. I am down to about three BMs per day if I do the bowel training in the morning and something similarly in the evening. If the daytime happens to have been the occasional "off" day and I had more bowel movements, then in the evening I will usually stick to a broth based chicken and vegetable soup - no beans.

Be careful with the prune juice - it can be quite potent and get thing moving way too much! Start with just one ounce and try that for a few days before adding anymore.

[Airmid]

Hi SBL Thanks for the clarification on how to slow down peristalsis.

In all my life I never thought I'd be wanting to discuss what I eat and how it affects my bowel movements, but here I am. Understanding the way that the new plumbing works and the terminology we use to describe it takes some getting used to. In the old days before cancer, a bowel movement to me would have meant sitting down on the toilet once a day and pooping all at once. The things I've read on the site about what it's like after reversal reference talk about bowel movements, clustering, feeling like we haven't completely emptied the bowels, inability to distinguish gas from stool etc.
I'm not sure how to define clustering? Would you define clustering of bowel movements as the need to have a second bowel movement within 30 minutes after the previous one? Sometimes I have to poop evey 5 or 10 minutes for and hour before I feel like I'm done-- would this also be considered clustering?
I've only been taking the metamucil for 3 days and already seen a big mprovement, but the times of day are inconsistent and I still have lots clustering. My surgeon told me it could take 6 months to a year to regain bowel function and the reality of that is now just sinking into my brain. I'm so glad I found this site because I have not recieved much information or education through my doctor or the hospital or least not as soon as I would have liked it. Anyway I'll just keep eating, pooping, monitoring and analyzing it all until I find my new normal.

[BrownBagger]

Early on, for me, clustering often involved wiping, standing up, flushing, then sitting right back down again. As time passes, the frequency also diminishes.

I think it has something to do with nerve damage/removal. Right after my reversal, I couldn't really tell what was going on "down there" at all. The only surefire way I knew anything was being accomplished was if I heard a splash. That's gotten better over time, but it can still be a little tricky.

Yeah, we talk some shit around here at the 'Club from time to time. Pull up a chair; don't spit on the wood stove.

[mm66ny]

To me, I would describe clustering in a way somewhat similar to Eric. Get up, and need to sit right back down again. Leave the bathroom, and need to go right back in. About five or more times within half an hour or so. Metamucil (I use Citracel) really seems to have made a difference. I had my reversal three months ago, on January 19, and without any medication, Imodium or narcotics, I am in the can throughout the morning just a few times, and then later in the evening. I have used Imodium overnight for a week or so to prevent sneaky poops while I'm sleeping (I only use it once per day), but other than that, things really have seemed to improve in a short period of time.

By the way, I was the one who mentioned "coloplasty." It is an alternative to a j-pouch where the narrowness of the pelvis, or other reasons, make a j-pouch difficult. It is a relatively new procedure, and is not just a straight coloanastomis (sp?)

Have faith, things will get better. And from your posts, it seems like you're on course for that.

[Airmid]

Hi Eric and mm66ny Thanks for your definitions of clustering. For me, at 1 month post reversal it's good to know that others are able to get their lives back.

Eric-I've been reading your posts and laughed when I read how you "clustered 'til you bustard". It's good to have a sense of humour as we go through and adjust to all these changes. You've also reminded me that my bowel function was not so good prior to my diagnosis-had diarrhea a lot and always felt like there was poop in my rectum--all along it was a nasty ole tumor. Actually, now I think my bms are more like they were prior to developing that tumor. Now if I can just minimize the clustering it might be almost like old times. I just have to give it time and be patient.

mm66y-I didn't know about coloplasty--thanks for explaining. they gave me a straight connect. I have not taken immodium yet but it's nice to know I can if I need it. Glad to hear that citacel is working for you. Your surgery was about a month before mine and I am just beginning to have a pattern of going to the bathroom a few times in the am and more times in the evening. It's nice to be free of the bathroom for the afternoon to get out and go for a walk.