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Having ileostomy reversal soon,asking for your experiences!

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

What to expext? Just briefly my story: dx January 2019 with colorectal cancer,stage 3,low grade. Started neo-adjuvant treatment March 5- Xeloda plus radiation for 5 weeks. Surgery-tumor removal plus hysterectomy (because of suspicion of tumor invasion) on May31.

Pathology excelent results:T3 N0 M0;all negative. I had decided not to have potential adjuvant therapy (another round of Xeloda),and I am heading for a reversal of my ileostomy on Sepember 20.

I am extremely happy with the surgery and pathology results,feeling pretty well,but having a long "fight" with my ostomy appliances. It took several months to find out how to keep the ostomy bag on without leaking....but it is good now.

I was wondering what to expect after the reversal-how long at the hospital and how my re-connected bowels will work.

I will appreciate your experiences and/or advices. Thank you all for your help during my cancer journey which,hopefully,is at the end.

Wishing all of you being NED forever,

Suzy

cinda
Posts: 33
Joined: Jul 2019

go under the heading reversal surgery ,down this same page ; someone have some good information that might make you feel better, good luck with everthing. hope your happy with results. I will need to get the bag after my upcomeing surgery so I'll be at the stage your at now.

 

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

you were right,it is airborne's post with some good ideas.

Cinda,I had a long "fight" with my bag,but eventually we became almost friends ;-),just when I am going to lose my stoma.

Believe me,it can be done,just be patient and get a lot advise frome other "ostomates". There is a wonderful web site "Inspire",where I got tons of information. 

Wish you all the best,

Suzy

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Hi Suzy

i have my reversal done in June 2018.   I had my rectum and part of my large bowel removed and I had part of my small intestine removed because they had to remove a hernia mesh which resulted in me getting an ileostomy.    Originally I was to be in the hospital 3 days but I ended up being there 4 days getting my bowels to work.   Also my bladder gave me some issues.   But really after that it was fine.  

I do have to say though they really didn’t tell me what to eat.   I started Getting bad abdominal pains until I vomited and then I would get diarhea.   I’ve kept a log and reported to my doctors office.  I am to be on a low residue diet which basically says no fresh fruit with seeds. No Nuts.  No lettuce.  No raw vegetables.    

even though  had some eating issues having the ileostomy removed felt great.   I wish you well on your upcoming surgery 

kathy

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

for your response. Gosh,you had much more problems then I (I read your My story). I just hope that some of the problems had been solved already- I couldn't find a post with your present situation. 

Did you have the food issues when you got your ileostomy,or after it had been reversed? I am on diet you mentioned since my surgery-means I had not eaten any raw fruit,raw veggies,lettuce,grains or nuts  in over 3 months,and I sure missed it,so hopefully can eat it after I recover from my reversal surgery.

My hospital was very good in giving me informations and advice regarding diet,so I knew what to avoid it.I believe they will continue to be as informative again.

Kaleena,thank you again and wish you all the best,

Suzy

cinda
Posts: 33
Joined: Jul 2019

Thank you suzycruise76 for the encourgement and the website. This forum is great , it nice to not feel so alone.

        Cinda

 

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

do you a date of your surgery yet? And have you been told if you are getting ileostomy or colostomy? 

Either way wish you the best success,

Suzy

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Hi Suzy:

I am currently doing well.  I am now on the 6 months follow ups.  I am still on the low residue diet as if I eat too much raw vegetables, I tend to get what they think is a partial blockage due to scarring.  It seems I get bad stomach pains every 6-8 weeks.  The stomach pains increase until I throw up several times, and then I get diarreah aftewards.   I sometimes had to miss work because of it.  So I've been trying to eat light. Sometimes I just need to eat healthy! So today I had a salad.  We will see how it is by next week.   So my reversal surgery was over a year ago.

This April I ended up with a factured humerous leaning on my dresser and needing surgery.  I have a plate and screws in my right should now.   I just had my following up appointment for that and all is going well.  Still growing some bone.  I will have another appointment for that in January.  Never a dull moment!

I hope you are feeling well Suzy.  The reversal surgery was so much easier.   It is a shorter hospital stay too.  Although I had to stay an extra day because not only did they remove my small intestine, I also had my rectum removed and part of my large intestine so they had to make sure everything was working proper before I left the hospital.  

Will they give you a nerve block prior to surgery?   I got them for that surgery and for my arm surgery.  It really helps you not to take too much pain meds.

My best to you Suzy.

Kathy

MeAndMine
Posts: 53
Joined: Aug 2019

I'm behind everyone here, just starting chemo and radiation next week, surgery will come after that, so I have no info for you but I will be rooting you on! 

nuc
Posts: 44
Joined: Jun 2019

Hi Suzy,

You probabaly had your surgery on the 20th, so you're already on the other side, so, congratulations!

Iif you look at my posts, my wife had her reversal 3 months after getting her ostomy.  She was in the hospital about a week and surprisingly experienced more pain from the reversal surgery, then her resection surgery.  Initially, while still in the hospital, she had no control of her BM's, but finally convinced the surgeon to give her something stronger then Immodium, and that settled her down.  Currently she is doing pretty well, does have a BM more often then previously and freshly juiced beets, kale, carrots go through her like water.  Taking an Immodium before hand can help.  We just took a 3 week driving trip and she didn't have any real problems, only a couple emergency stops along the way.  Interestingly, the reversal scar is taking quite a bit more time to heal back to her normal skin color, as compared to the resection scar. 

Adam

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

As I told Suzy, I had my reversal surgery in June of 2018.   I still have a big purple scar.   The only thing that was bad about my ileostomy was where it was located.  Right at the waistline!   So all my pants, etc. hit that darn area.   My scar still does itch and pinch at times.  It is bigger because it started to pull apart, so now I have a bigger scar.  Looks like lips.  My best to your wife.

Kathy

cinda
Posts: 33
Joined: Jul 2019

I had my utrasound test . the tumor is through 4th wall of colon ,not in lypnods. Thought I was now down to one more test which was a MRI. Now I have go go to a gynecologist to see if they need to take out that area, a little concered about that test as I was told 30 years ago I was full of tumors in that area and needed to have everything removed. I didn't do anything. also didn't have anther pap. I know not very smart.  I'm from a family that has no faith in doctor. My parents and brothers and sisters never go to doctor. ended up 5 sibling died of cancer. I was told Oct 10 2018 I had cancer and its been test after test. Most test twice..before and after radition. Now there talking surgery.  I'm changing insurance the first of Oct so that complicates thing. I was told I would have a colostomy. The one they put on your right side. Thank you for asking Suzycruise 76

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