Giday DE, the clustering movement is something that I still have. Is normally worse when I have been grazing a day or two before hand. I have found having big meals and limiting food in between helps.

Agree with the metamucil once I found the right level for me, also psyllium husks, porridge. All these seem to have a 'cleaning' effect for me though too much can lead to bloating and in the case of porridge put weight on.

Another thing my surgeon said to do was walking, he stated this will help in moving through the bowel. I also did not run to the toilet everytime I felt the need, I tried to hold on. In my mind this seemed as way to train my movements and to build up my ability to 'store' up before using. No idea if it helped but mentally made me feel better.

Good luck G8

I generally have three meals a day. They aren't always large. I walk around the apartment but I'm still not strong enough to go out walking outside or to really go anywhere except to appointments. I still get really weak sometimes and am really sore.

Earlier, it was lots of small bowel movements and some gas. Now it's lots of gas, a little liquid stool but nothing solid. I'll try to hold on longer. My surgeon took 50% of my rectum and 50% of my sigmoid

. I sometimes get really low grade fevers from 99.3 to 99.6. I had a fever of 100 once but it didn't last long. My surgeon said they wouldn't consider anything a fever unless it was 101.

Last night I experienced a burning knife like pain on the left side of my abdomen which is where the anastomosis is located. It had me doubled over so I took a dilaudid. I try to really limit dilaudid because they slow down bowels too. I also get spasms and cramping sometimes.

DE please remember that I am not a doctor so anything I say is what I did, what was my experience so please if you have any concerns see your doctor.

One thing to remember after the surgery we are given a new bowel to work with as when we are born we have to learn how to use this new tool. There will be accidents, there will be success, there will be forward steps and there will be backward steps.

I thing is important to look back several weeks/months to say OK back then this was happening now that is not happening and then true progress can be judged.

It took me sometime to get to a point where I did not want to have the gauci bag put back on, initially I could not see any life the way my bowel was acting after the reversal.

Wishing you well, G8

Hi DE

My surgeon said not to take anything to control diarrhea at first. Then after I said I was going more than 10x/day he said to try the Metamucil. I did use it for a couple of months and I didn't think it worked but maybe I gave up too soon. I tried a dietician and recorded time and what I ate/drank/bowel movements and times for a couple of months but I was on the low residue diet she recommended when I did that. I gave up on that too, too many foods that I love were eliminated and I didn't think my BMs really changed that much on the new diet but they found mets shortly after and I'm back on chemo so that impacts BMs.

I still get clustering at least once a week. I can roughly predict how I will feel taking into consideration 3 days/chemo per fortnight. I do avoid certain foods but if BMs are getting really slow I will deliberately eat them! I am finding really slow and painful to almost be worse than rushing to the toilet. I don't take any drugs to control BMs with the exception of codeine for cramping/pain if needed. If I can't feel the pain I find I can stay out of the bathroom and relax. Sleeping also helps, easy on chemo, then hope cramps are gone when I wake up. I also get bloating and gas, no idea how to help with that. You could try avoiding gassy foods, you should be able to that info from a colostomy group or google it! I also only walk inside, home or shops with toilet facilities because I agree that it does bring on BMs and that's too hard in public.

I basically try to be as "normal" as possible and hold out until I really must go if possible, take a book to the bathroom and try and relax and wait until I feel I'm done (and that can be a long time). On "good" days I can almost predict when that will be, but usually it is within an hour of eating so I try to stick to 3 meals/day. Towards the end of my treatment fortnight I have been able to go out and eat in public, something I do rarely and not far from home in case I find I can't cope, but successfully :)

I'm about 16 months post ileostomy reversal and I'm much better than at first but it can still be tricky to go out. Listen to your body and try and figure out what foods/drinks/drugs work for you and stay positive. It's very much a long time trial and error process, keep experimenting by eliminating/adding foods and taking note of the effect. Particularly bad are foods susceptible to bad bacteria, be mindful of hygiene and cooking processes.

If you are concerned you are not progressing or having difficulties always discuss with your Dr, they are the only ones that know your circumstances.

Thx for tip that grazing might affect clustering G8, I will try and take note of that. I might start the Metamucil back up on "slow" days. My dietician said to limit fibre though, but I was having much more diarrhea then so it might do the trick.

Kim

I've days like this, I find taking something like omeprazole helps, it effectively slows down the production of stomach acid, which gives you stomach time to properly digest the food rather than it just rushing through the system.

When I have clustering it's not diarrhea but either hard or fairly soft stool. My stool is much softer after using stool softener and metamucil. I will have to find out what foods help and which foods make it worse.

I hate to say this but my diet consisted of mostly fresh fruit and vegetables, with an occasional egg of some type and maybe a piece of toast.My snack of choice were walnuts toasted in the oven with a bit of garlic powder on them. I did drink atleast 8...12oz glasses of water daily and many days more.My bowels were not really an issue of course I had a few accidents but certainly the exception after three to four weeks I was good to go.......Are you on chemo or radiation presently???

No chemo or radiation. I'm still waiting for pathology results. I had my surgery November 20th. I think maybe it's taking longer because it's getting closer to the holidays.

One thing you can do is to chenge your food. Food can affect you differantly than before your surgery. Certain foods may make you have bowel movements immediately after eating. You will need to test foods and see how you react to them.

Do medication. Take your medication before meals. Your doctor will tell you the dose and schedule. If you do not have a bowel movement for 2 days, contact your doctor or nurse.

I have the diarrhea. I only had it for a couple of days in the hospital. I also have a low grade fever. Very low grade 99 but I'm sweating and having horribly painful cramping especially on my left side which is where the anastomosis is located. My surgeon's office is closed so I'm not sure if I should stop taking the stool softener or if this is just part of my bowels trying to regulate after surgery.