Reversal Log: Experience,Problems, Q & A's

[Badass]

A revolution from one day to the next! I can't believe it!! I didn't have my morning coffee one day... no clusters! And this has continued for a week. Usually, I have one cup in the morning so I assumed it might prompt a bowel movement in the morning but I didn't think it was possibly related to my nighttime clustering that goes on for hours. It is not the caffeine either because I can drink lots of tea with no probs. I didn't have my coffee last week because I had a doctor's appointment and I noticed that day was unusually good, so I decided to stop coffee. I have instantly gone from 12-20 BMs a day to 0-2. And I don't walk around with that "feeling" all day that I have to go or something is "in there."

I don't know what it is- I have been reading what I can find on line about coffee and have learned that there are unidentified chemicals in coffee beyond caffeine that can be irritating to intestines.

I experimented with just a half cup one afternoon and voila, painful clustering for an hour and half in the evening-- again several hours later.

So, if you are having problems with frequency, try cutting out coffee,even if you just have a little early in the day.

This is the happiest I have been since diagnosis. I feel normal!!!!!

Jane

[teachpdx]

Jane - I am so happy for you. I know waht you mean about that feeling - drives me crazy. I will keep that in mind since I am only 8 weeks out and usually drink coffee daily. I have found that following coffee with a chaser of psyillium helps too. I just ate my first apple since my reversal - I couldn't take it any more I needed something fresh. Kristi

[laneylou]

MarkR, if you see this, let us know how the reversal went! (guessing you probably had it already, since on 4/26 you said "about a week")

Starting to get kinda nervous myself - doing the pre-surgery routine of trying to wrap up things at work, getting the house cleaned up, paying bills ahead of time, making lists of what to bring to the hospital... but I'm also getting excited! The docs and nurses at my hospital were practically high-fiving me - anesthesiologist was like, "Don't you worry, we'll put you to sleep and you'll wake up with no bag!"

Not that I hate the bag (I refer fondly to "Donald", as he "quacked" a lot when he was new), I really appreciate the whole life-saving thing and after an adjustment period it's really been no big deal, but I'm not going to lie, I'm looking forward to saying goodbye.

[justin case]

Just bumping this up.
Regards,
Michael

[SammyJ]

Good idea Michael.

I have finally had some good progress. Recap is that I have no rectum and had my reversal late November 2012. I had a really hard time for months, going around 20 times a day, little unsatisfying pellets. As well as real pain, discomfort and plenty of gas. Followed by an obstruction in April.

Finally I am pleased to report that I have reached great regular habits. Maybe twice a day, big adult sized normal stools around 4 - 5 times a week. Then I usually have a couple of days of constipation then a nice big clean out. I have eaten onion and garlic and m now tolerating raw veggies. I am travelling at the moment and things are a bit all over the place but perfectly manageable. I never dared to dream I would get to this point as my surgeon told me after 3 - 6 mths I would only have incremental improvements.

My only complaint is that sometimes the stools I do feel kind of acidic, they really burn or irritate my poor sensitive skin, and i haven't figured out any particular food that causes it.

All in all a massive improvement just as I was starting to give up hope!

[kiwiinoz]

Onya Sammy,
Glad things are working for you and you know, sometimes Sh*& happens huh
Kiwi

[Badass]

Hi Sammy,
Great to hear from you, and even greater that you are enjoying such poop progress! May it continue! Hugs to you.

Jane

[justin case]

Oh, you know this was Jane's idea Sammy, and this thread has had over 120 hits since yesterday. I'm approaching 20 months since reversal, and it seems like the only time I have a problem, is when I eat Ice cream. Of course, it may not be that much of a problem, if I didn't eat it after a few beers I hope some of the new people considering reversal , get to read this thread.
Regards,
Michael

[ams5796]

Have any of you given up certain foods or food groups that you feel has had a positive impact on your bathroom issues? Do you all drink coffee or does that give people problems?



Ann

[tammylayne]

I have discovered I cannot eat dark leafy lettuces such as romaine, spinach etc. Iceburg...no problems. Red meat is also a big no no...but I don't tend to eat it anyway...maybe once a year. I also might have issues if I eat out...makes you wonder about the quality.. Early in the process i could not eat cooked mushrooms...ZOOOOOOOOM right through me. Now ok. I think daily enema controls most of my issues though.

[Badass]

Hey Michael,
Thanks for being a booster for this thread! It is nice to see it take on a life of its own.

Things got soooo much better for me after I gave up COFFEE!

[justin case]

Hey Michael,
Thanks for being a booster for this thread! It is nice to see it take on a life of its own.

Things got soooo much better for me after I gave up COFFEE!

Oh no, not coffee , that would be worse than giving up beer
Regards,
Michael

[nicola smith]

Good idea Michael.

I have finally had some good progress. Recap is that I have no rectum and had my reversal late November 2012. I had a really hard time for months, going around 20 times a day, little unsatisfying pellets. As well as real pain, discomfort and plenty of gas. Followed by an obstruction in April.

Finally I am pleased to report that I have reached great regular habits. Maybe twice a day, big adult sized normal stools around 4 - 5 times a week. Then I usually have a couple of days of constipation then a nice big clean out. I have eaten onion and garlic and m now tolerating raw veggies. I am travelling at the moment and things are a bit all over the place but perfectly manageable. I never dared to dream I would get to this point as my surgeon told me after 3 - 6 mths I would only have incremental improvements.

My only complaint is that sometimes the stools I do feel kind of acidic, they really burn or irritate my poor sensitive skin, and i haven't figured out any particular food that causes it.

All in all a massive improvement just as I was starting to give up hope!

It's wonderful you are making such progress Sammy. You've been really patient and stayed the course. Congratulations

[pukalania]

Hi everyone
Decided to post here in hopes someone may have similar experience . Hubby had illeo reversal done on 9/12 it ended up being more complicated due to a lot or scar tissue so instead of just using the stoma opening they ended up opening with middle incision. 2 weeks after surgery he ended up with 104 fever and red skin around incision we went to Er and they found he had a hole in his small intestine. Surgeon is not sure if leak is coming from connection or there is another hole that happenned during surgery. He is on TPN now and they are waiting for the hole to heal... It's been 20 days since we discovered this issue and no progress ... He can't be on any chemo since he can't take anything by mouth and since they want him to heal first but so worried the cancer will spread... Has anyone experienced this and how long did it take for the hole to heal?
Thanks so much

[justin case]

Hi everyone
Decided to post here in hopes someone may have similar experience . Hubby had illeo reversal done on 9/12 it ended up being more complicated due to a lot or scar tissue so instead of just using the stoma opening they ended up opening with middle incision. 2 weeks after surgery he ended up with 104 fever and red skin around incision we went to Er and they found he had a hole in his small intestine. Surgeon is not sure if leak is coming from connection or there is another hole that happenned during surgery. He is on TPN now and they are waiting for the hole to heal... It's been 20 days since we discovered this issue and no progress ... He can't be on any chemo since he can't take anything by mouth and since they want him to heal first but so worried the cancer will spread... Has anyone experienced this and how long did it take for the hole to heal?
Thanks so much

I have not heard of this problem. I did have a major blockage and needed surgery to remove it. I would keep very close tabs with your surgeon, until this is resolved. I would think this question is way beyond, any advise you could get here.
Regards,
Michael