Pre-Ileostomy Questions...Please Help!

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I'd Rather Be Riding
Regular Member

Date Joined Apr 2010
Total Posts : 149
   Posted 12/23/2010 12:57 AM (GMT -6)   

Hi everyone,


I need ALL the input I can get! I am 24 years old and I was diagnosed with a "global" motility disorder (stomach, small bowel, colon, and rectum are all affected) six years ago at Mayo Clinic when I was 18. November 2007 at 21 years old, I had a total colectomy with ileorectal anastomosis. This helped for a few months, but then everything slowed down again and became very painful. I have done everything- meds, supplements, biofeedback, researched myself into the ground trying to find something, anything that would help. Nothing works. My transit time (keep in mind I don't have a colon) is anywhere from 18-36 hours. My surgeon feels that all options have been exhausted and that the next step is an ileostomy. I have been ready for this for YEARS, but I do have a couple concerns...


First and foremost concern: my surgeon said he would most likely do a loop ileostomy that functions permanently. I was not happy to hear that. I have horrible rectal spasms, and in my mind, it seems like severing the connection between the small bowel and rectum (and thus forming and end ileostomy) would provide greater relief. Please comment on that...have you seen any research, or heard or experienced anything on this topic? I would love for him to remove the rectum, but I don't think I have any chance of that happening even though the defecography showed that I couldn't get ANY of the barium out.


Any equestrians out there? I used to ride competitively and I miss it terribly. Even if I can't compete, I would still like to be able to ride again for leisure.


Another issue is that my parents are vehemently opposed to this surgery. Think WWIII. It's that bad! My mom has been an oncology nurse for 40 years, so all of her experiences with ostomy patients have been awful because chemo and radiation have ravaged their bodies and caused all sorts of problems with their stomas. Obviously this won't be the case with me, but she cannot separate the two. They think having an ileo will be a death sentence for me (when it could be a new beginning). Why is she so paralyzed with fear over this? I am miserable and my parents will be the first to admit that I have no quality of life, but they are still opposed. That disconnect is mind boggling to me. My total colectomy wasn't scheduled until I was down to 83 pounds (5'6") and I had professors stopping me on campus asking if I was ok. I don't want to be that sick again before my parents finally agree to surgery.


Any information/experiences you can share with me are so appreciated! How you feel, what you can and cannot eat, words of wisdom, questions to have for my surgeon, etc. I scheduled a secret appointment with him on January 12 so I can talk to him without my parents present and also so I can make him aware of how freaked they are. Please throw out any bit of advice on the surgery, life with an ileo, etc. I just want to feel better and get on with life. I have watched plans of med school and other big things go down the drain; I am applying to graduate programs, but I know I cannot make it through feeling the way I do.


Thank you so much!



Life-long GI problems.
- 2004: Motility problems completely took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia, small bowel dysmotility, delayed gastric emptying, rectal dyssynergia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic debilitating pain due to a small bowel dysmotility.
- September 2008: Barium study shows dilated small bowel loops (4.9cm), indicative of partial obstructions
- May 2010: Doctors suspect worsening rectal dysmotility; manometry inconclusive; rectal biopsies normal
- June 2010: Biofeedback (entire pelvic floor in full spasm...PT has quite the project on her hands!)
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

Regular Member

Date Joined May 2008
Total Posts : 60
   Posted 12/23/2010 2:01 AM (GMT -6)   
Hi Allie,
I have kept up with you and have read all your posts...My daughter who just turned 13 has the same problems as you and we tried several things over the years like you . We started with the "ACE" procedure, then we took her colon out in peices, still tried to make the "ACE" work it didn't, all the while she was on all kinds of meds . We then took the rest of her colon out and also had to take most of rectum, out because of strictures- she only has 1 inch left and that doesn't work. They tried to connect her w/out doing a permament illeo but that didn't work either, so we had to go to a permament illeo. It was the best thing we did !! She loves it !! It has given her the best quality of life that she has ever known...She even asked me and the DRs why we waited so long to do it?
That part of her sickness is doing great...but she also has problems with her urinary system and her GYN system, so we are still looking at more operations etc for those issues, but her GI issues are 1000 times better with the illeo.

She does have some bumps in the road with her GI issues, but compared to where we used to be, she says she would never go back to before her illeo. She can eat what she wants but has some issues with being nausous and weight loss, so she has a port a cath and we do IV meds and at times have to do TPN/Lipids/Fluids, but that is the biggest GI issue we have now. It was hard for me and the Drs to make that final decsion for the illeo because she was only 12 , and we didn't know how she was going to feel about it, but it has been truly the grace of GOD. She tells everyone that was GODS way of healing her !!! I will be praying for wisdom for you and that your parents see that this could be your miracle !! If you have any more questions just ask :-) I tried to fit everything in... Merry Christmas !!
P.S. How is Lizzie doing? Been praying for her !

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 12/23/2010 7:49 AM (GMT -6)   
Allie~wow, you've had quite a journey in 24 years sad

Could your surgeon connect you with stoma patient(s) and would your parents meet with them to learn the positive side? There are usually patients who are willing to share their story to help others make their decision.

I've read many of your posts and you've done your research and gotten many opinions but I cannot see why your doctor wouldn't remove the rectum...have you thought about sending your file to another teaching facility to get an opinion regarding it's removal? What is your doctor's reason for not removing it? If it doesn't work why keep it????

I RIDE!!! I don't have a lot of time to at the moment but my daughter is a competitive hunter rider so I can hop on her horse for fun, lessons or show! There isn't anything that would limit the riding part of things but I am careful around the barn when lifting things...hay bales can be heavy!!! You should be able to get back in the show ring!!!

I am lucky and can eat EVERYTHING...some foods travel through my system better than others...I still eat whatever I want but might limit the amount at one sitting. As patients, we have to do what is right for us. Sometimes the people who love us don't understand but it YOUR life and when the quality isn't there it's time for a decision, no matter how difficult. When you've weighed the pros/cons and in your mind you could live with the 'what ifs' it's time to get your life back! I don't think any of us had a 100% guarantee we'd get the life that we have but I know for me it was worth trying.

I hope you find relief soon and your parents come around to understand.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 12/23/2010 9:57 AM (GMT -6)   
     Hi Allie.  So sorry to hear of your problems.  My case is totally different.  I suffered with ulcerative proctitis for twelve years.  Ironically, my colon wasn't in bad shape, just some minor diverticulosis.  However, with UC, they will not just remove the rectum because the disease can later attack the colon.  After running the gamut of meds, prednisone, rectal meds, 6MP, Remicade and Humira, only to become prednisone dependent since 2008, I decided to take the bull by the horns and seek out a good colorectal surgeon, as my GI doctor refused to refer me to one.
     Long story short, I had a total colectomy with end ileostomy on June 28th.  Because of my age, 63 at the time, and my extended use of prednisone my surgeon flat out refused to do a j-pouch.  I had no problem with the idea of wearing a "bag".  As a matter of fact, I didn't want to undergo any more surgeries than the one I had to have.  It was the best decision I ever made.  Personally, I don't ride....last time I did I had a frisky horse who almost threw  However, your quality of life will greatly improve with the ileo, I am sure.  Talk to more people because this is a decision you have to make on your own.

2b ColonFree
Veteran Member

Date Joined Nov 2008
Total Posts : 2603
   Posted 12/23/2010 10:20 AM (GMT -6)   
hi Allie,
i'm so sorry you're in so much pain still. i do think an ileostomy can improve your quality of life greatly. as you know, i've already had mine done on July of this year and feel so much better this way. and i would never go back to the way it was.
about removing the rectum, unfortunately for ppl like us they don't usually do that. i wish they had removed mine too and made an end ileostomy, but my dr also said that there's no way he'll do it. so i have a loop ileostomy. another reason why i wish i could have an end ileo is b/c end ileos stick out much better and usually don't tend to retract as loop ileos do. mine is already retracted - the lower part is at the level as my skin, sometimes lower, and the upper part is just a tiny bit higher, but lately it's starting to look almost the same as the lower part. i hate it, cause it causes burns in my skin. but i use convex wafers and adapt rings and they seem to help a lot. when i changed a week ago i thought of trying the flat wafer again. bad idea. i just changed couple hours ago and saw the biggest burn in my skin i've ever had since the surgery, so i guess i'll stick to convex from now on. with the convex wafer i don't have the burn issues.
i'm sorry your parents are still so against it. maybe you should introduce them to this site, so they can read for themselves how there are so many of us that are very happy with their ostomies and live a full life! maybe this site can help them understand better that having an ostomy is not the end of the world. and they can also ask us the questions themselves, we'll all be happy to answer them wink
about the surgery, since your colon has already been taken out, then your surgery should be like mine - creating only the ileostomy is a short and easy procedure - mine took only 20 mins! there wasn't much pain after the surgery and i used pain meds only in the first couple of days, then i didn't need any.
what you should be aware of is that in the first 2 weeks or so your system will be restless, meaning it takes time for your system to realize it's new location of outlet/it's new route, so there could be lots of guts pain and even obstructions. but it's totally normal at first and goes away after about 2 weeks, when your system adjusts finally. also, your stoma will be VERY loud at the first 2 weeks. lol my stoma was SO loud it constantly woke me up at night tongue but it was trully funny.. after 2 weeks she became very silent, she doesn't makes any noises now, maybe only in the morning she makes a bit of noise, but this noise is so tiny that only i can hear it. i guess she just wants to say "good morning" lol.
i now feel the best i've felt in 17 yrs struggling with my nonfunctioning colon. i do have a slow small intestine, but i'm handling it now with lots of prune juice and it seems to help much better now than when i still used my rectum. now that the rectum is out of the way, the affect of the prune juice on only the small intestine is much more affective and long lasting. i think the small intestine doesn't adjust to laxatives as the large one does and you can fool him every time tongue   (i do have this fear that one day it won't work, cuz then i don't know what i'll do). i also drink presh squeezed pear juice - it also has a laxative affect, at least for me. but only if i drink at least 400 ml and it has to be fresh squeezed (you know, like they squeez carrot juice etc)
i can eat almost everthing; i still stay away from certain foods, such as: fresh fruits and vegies (just tried some not long ago and it caused me pain and slowing down my system), peanuts, peanut butter, rice (can cause me a blockage easily), any kind of beans, corn, milk (at first all dairy caused me awful pain, but now i can eat cheese, only the milk it self doesn't agree with me), fiberous foods - they also block my system badly.
but compared to the way i was before the ileo op, i now can eat and enjoy many more types of foods :-)  
life with an ostomy is really not so bad at all, and it shouldn't stop you from doing anything you like to do. actually you'll be able to do a lot more with the ileo than w/o it.
hope i helped some and i hope everything works out for you soon. best wishes to you!

Veteran Member

Date Joined Dec 2008
Total Posts : 1325
   Posted 12/23/2010 11:18 AM (GMT -6)   
Allie, it is funny that you posted this....

I just saw my brother for Christmas whom I do not see but once a year, and he told me I need to think long and hard about keeping my stoma. I just had to laugh because he too thinks this must be a terrible way to live.

He was so adamant that I just said, "I will consider having the takedown".


And as far as the loop ileo and keeping your rectum, I understand where your doctor is coming from.....I would not even consider having my rectum removed and a permanent ileo before my surgery because I was TERRIFIED I might be one of the people that just couldn't stand having the "bag"! Don't forget that there are some people that are counting the days to have their stoma taken down.

I just happen to be one of the people that LOVE my ileo because it has given me back my LIFE. This past week, I have been ripping and running and barely home and I have no worries about getting home to take the dreaded laxatives and setting aside hours everyday to sit on the toilet.

BUT, my transit time can still be slow too, up to 24 hours sometimes. I am not sure why this is because my small bowel follow through showed a normal transit??? But, this does not cause me any discomfort of any kind. And if I feel a little clogged up, I just walk on the treadmill for a little bit and it will go away. And I can also drink pickle juice or fruit juice to speed and thin my output. This sure beats the miralax because this works very easily.

I understand your parents are not on board, but it is very hard for people with normal transit to understand how having an ostomy could actually be BETTER and healthier for us.

Read your mom some of our posts...mine, Trixiesmom, and Hodaya especially because we all have NORMAL and disease free colons and rectums, but instead suffer with colonic inertia and outlet defecation syndromes which are functional problems and have no cure or medications to treat.

All 3 of us are happy as pigs in mud with our temporary loop ileostomies.

Good luck, Tracy
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

Regular Member

Date Joined Apr 2009
Total Posts : 401
   Posted 12/23/2010 1:32 PM (GMT -6)   
as you know I have an end ileo but only because I had two colon resections before which left me with 20cm of colon.. When they got in, they saw how bad the rest colon was and decided it was medically advised/indicated to remove it, it could have ruptured. Originally, they rest of the colon should be left.
So only when there is some concern most surgeons will perfom an end ileostomy in diseases like ours.

But in my opionion, and I did some research on it, an end ileo is the best option, a loop ileo can cause more problems, particularly in people with motility problems.

Removal of the rectum is not done either in dysmotility patients since it is not considered as medically obligatory. If you had proctitis, this would be a reason, rectal spasms are not and a removal would be considered as amputation.
I have the same problem with my bladder. Since I have no cancer a surgery would be considered as elective procedure and due to the invasiveness it would be considered as an amputation of a healthy organ - well, healthy beside the fact that it is completely afunctional and causes severe pain and a infectious problem which cannot be handled.
don't talk about does not happen in medical science, at least most times.

Post Edited (pelztier86) : 12/23/2010 1:31:10 PM (GMT-7)

2b ColonFree
Veteran Member

Date Joined Nov 2008
Total Posts : 2603
   Posted 12/23/2010 3:02 PM (GMT -6)   
LOLOLOL Tracy, you crack me up...... you summed it with the best expresion..... "happy as pigs in mud"  tongue   LOVE IT!!!!!

2b ColonFree
Veteran Member

Date Joined Nov 2008
Total Posts : 2603
   Posted 12/23/2010 3:05 PM (GMT -6)   
hey Sarah, you explained why the drs don't remove our rectum and do us an and ileo as best there is and thanks so much, i always love to learn more info from your posts, you have such great knowlege!

hope you're holding on and today finds you well!! love and hugs to you!!
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 12/23/2010 7:13 PM (GMT -6)   
My family was not in support of my surgery either.  They eventually came around after they saw how healthy I was after surgery.  Like everyone else has said, you have tried everything and you have researched this extensively.  This is your decision and it's your life.  You will have far more access to leading a full life post surgery and for me, that was reason enough to choose surgery.

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 12/25/2010 10:14 AM (GMT -6)   


You are an adult capable of making your own decisions.  You are obviously researching this to the nth degree and doing the absolute best you can to make your best decision.  What about this slow transit issue does your mom not get?  If she is a nurse, even though an onocology nurse, she must have some clue as to severely slow transit.  She also witnesses you suffering.  Why can she not wrap her head around the fact that you have no cancer and will not go the way of her cancer patients?  She may need some counseling on this to help her with HER issue of you having a needed stoma for other reasons. Good for you making the secret apptointment with the surgeon.  You are entitled.  Remember, you are in the PRIME of your life.  Your parents' prime is long over with.  You have a right to the prime of your life, the best it can be.

I'm on my 8th major cruise in 3 years as an ileostomate.  One was a world cruise with 64 port trips.  You are a bright girl and can easily learn the appliance issues.

Regarding riding, I'm not and never have been a rider.  But I ballroom dance, swim, walk a lot, and lift just arm weights in a gym.  I am conservative and minimize much action in the stoma area.  BUT I am 54 you are 30 years younger and have much stronger muscles.  You would likely be fine riding.  But only your surgeon can answer this, or another riding ileostomate.  So far I've had no stoma issues or appliance issues.  Bless you and GO FOR IT!  Rosemary

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 12/25/2010 10:16 AM (GMT -6)   

My transit time is normal and is 3 hours from mouth to stoma. Tell your mom this fact and that your transit time is way out of the normal range. I had my ileostomy due to irreparable damage to colon and rectum; I had no pathology and totally normal transit. Rosemary

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 12/25/2010 11:58 PM (GMT -6)   
Being a Mom, i can kind of understand where your Mom is coming from, in a way, she is scared for you. To a Mom a child's health and well being (at least to most Mom's) is the MOST important thing in the world. I would give my life, in a heartbeart, if it would make my baby healthy if he was sick. So it may be that they are scared, esp since she has seen such bad outcomes. My grandma was kind of opposed at first, but it was because she was worried, because she was afraid i wouldnt be happy and that i would hate it and there was no going back. But she realized that i would be happier, and her final words on it were, if it will make you healthy then i am happy for you, but i wish i could do it for you, i would today if i could. Having said that, I don't know your parents, but it does sound like they are worried for you. i think the suggestions of having them read this board, or talking to ileo patients who are happy and healthy, if you want i will talk to them on the phone, will help them greatly.

End ileos are easier to take care of, i think i would really push for that.

I had UC (my fav sentence ever!!!) so my situation is different than yours, but i eat whatever whenever, i do whatever, whenever. i don't ride horse, they are terrifying! But there is a professional surfer with an ileo, fred astaire has an ileo, one of the queens of england had one, napoleon even had one! There are mountain climbers and bike riders and football players, thousands of people wtih them who do lots of things! I think being careful with the lifting, esp at first would be important. I'm not sure how common it is to get thrown from a horse, but maybe pad your stomach area with some extra shirts or something, just to protect the area. Nothing overboard, just roll up a towel and stick it under there. Might not look pretty, but it would help cushion a blow, if its likely to get thrown off, like i said i don't do horses! even ponies are scary, lol.

I was 21 when i got sick, i wasted all my 20's being sick and the first two years of my son's life, i wish i had done it sooner.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Regular Member

Date Joined Nov 2010
Total Posts : 89
   Posted 12/26/2010 4:01 PM (GMT -6)   
That is so bad that family can be so unkind fortunately my family came around....I am planning on seeing my mom this up coming yr. Iam going to fly and plan on showing mom the whole 9 yards about it. My loop ileostomy is for slow motility and pelvic floor disfunction and I LOVE my ieo!!!! life is so much easier I still am very self concious but that will pass. You must do what you think is best for your body your health is your concern. Trixiemom
have loop ileostomy
diagnosed with colon inertia
2 1/2 weeks doing well

Regular Member

Date Joined Nov 2010
Total Posts : 269
   Posted 12/27/2010 9:15 PM (GMT -6)   
Hi there! Another equestrian here and still waiting to get back on my horses! I'm 20 years old and had my ileostomy surgery back in July but because of terrible perianal involvement from Crohn's I haven't been on a horse in over 6 months. I'm still waiting to be healthy enough to get back on. I miss riding so much too! You're not alone here! :)
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