Temporary Loop Ileostomy scheduled June 21st.

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answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 5/8/2010 10:04 AM (GMT -6)   
So, me and my doctor finally have a plan of action now that we know what exactly is wrong with me. After many tests and many years, I have been dx with rectal intussusecption, anismus, and an anterior rectecele, and this is why I can't poop. It is called an obstructed defecation syndrome and really rules my life in every aspect. 3 to 6 hours on the toilet everyday and my quality of life is crap. LOL

So, the doctor is going to go in and remove the intussusecpted part of the rectum, remove the sigmoid colon, do a rectopexy, and hook me up to a temporary closed loop ileostomy for several months. This will be performed laproscopic which I am happy about because no huge cut and less chance of scar adhesions forming.

I am worried about having the ileostomy, but know this is what I need to improve my quality of life.

All of you guys with ileostomies...
what can you eat? I already don't eat fiber or much roughage, so, should be no problem there. But, I do drink coke and LOVE coke. Do any of ya'll drink coke?
Can you eat meat, like chicken, roast beef, or hamburgers? I mostly eat chicken!
Potatoes I know can cause problems, but what about pasta, breads(white), beans???
Also, do any of ya'll take immodium to slow the poop down?

I am also a bus driver. My doctor said I will be able to go back to work the 1st week of August?? Is that possible? DO ya'll think I will be ready to return to work that soon after? He said I should be feeling good 2 weeks after the surgery???? I hope he is right.

Also, the bus has no air conditioning and I live in Georgia, so, extremely hot. The conditions on the bus can get as hot as 117 degrees! Will the bag stay on in those harsh conditions? I will only be exposed to this heat for 4 hours every afternoon as the mornings are hot, just not 117 degrees hot. And this heat is only for 2 months, luckily not all year.

I am also worried about where they will place the stoma, seeing as I will be sitting for 8 hours a day because I am driving. I also have a funny brake on my bus, which is where I have to bend down to the left and push this handle down, and then back up to release the brake. Will the bag interfere with this movement? I can request an air brake, but really don't want to have to explain as to why. I don't want anybody knowing I have a bag. And I won't have this funny brake forever seeing as we get upgraded to a better bus the more seniority we have.

My doctor told me I shouldn't have any problems doing my job. And that I can do anything I want to do.

I went and looked at ileostomy supplies and I was like WOW...so much to choose from.

Thanks, Tracy

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 5/8/2010 2:42 PM (GMT -6)   
Glad they have such a detailed plan for you!! Your ileostomy shouldn't interfere in any way:)

I'll try to answer your questions in order:

Roughage shouldn't be a problem. You should be on a mushy diet for about 6 weeks post op but after that you can introduce foods (one at a time) to see how YOU do with them. We are all different and what bothers one person might not bother another! Potatoes are actually one of those foods on the 'mushy' diet - no skins - since they act as a thickener and are easily digested. Chicken should be fine as well as beef, pork and fish. Pasta, bread and beans shouldn't be a problems either, just try small amounts, until you know how YOU handle foods.

Being that your surgery should be lapro, Aug 1 doesn't sound off, but if they have to switch to open you might not feel up to it that quickly.

The issue of extreme heat may only cause you to change your appliance every other day instead of every 3 or 4 days...I am not exposed to those temperatures, but in the summer, when I am very active outside, I change every 2-3 days.

Make sure you explain your job to the WOC/ET Nurse. They take all of that into consideration when they mark you for your stoma. Also, wear your normal clothes so they can see where the waist band sits.

Your Doc is right, you should be able to do anything you want, an ostomy doesn't limit you in any way!

Don't worry too much about supplies. The WOC/ET Nurse will set you up with what works for your body/stoma and when you get home you can request samples from the many suppliers, if you want.

I hope that helps answer some of your questions - Good Luck Tracy:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 5/8/2010 8:40 PM (GMT -6)   
Ohio, thanks for replying. I feel very overwhelmed by all of this, but feel very fortunate that atleast I have time to prepare unlike some others who have no time to adjust to getting an ostomy due to an emergency situation. I do smoke cigarettes, but, other than that, I am in pretty good health.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 5/9/2010 6:18 AM (GMT -6)   
You'll be okay...you know, since your stoma will be temporary, you'll breeze right through those few months!!!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 5/9/2010 7:50 AM (GMT -6)   
Tracy, you know - you having the exact surgery I just had, except I didn't end up with a stoma. I also had it open, and felt really good - much faster than when I had my Lap. surgery (sacralcolpopxy) I really felt almost normal with the open by 4 weeks! That said, I'm 48 yrs old but I work out 6 days a week and that may have been why I recovered so fast. (I was told by the doctors, that my recovery would be long, and it would take a full yr to fully recover!!)

Anyway, I wanted to address the rectopexy... my surgeon planned on doing everything via lap, but decided at the last minute that he could address the rectopexy better via open. My first rectopexy was via lap... just wanted to share so that you can address the surgeon in regards to this. From researching, it does appear that the open may be a better option for the rectopexy... can't wait for you to finally have this all behind you!
*** New Schdule Schedule July 26, 2010 **

~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**


answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 5/9/2010 1:58 PM (GMT -6)   
Jenise, if he has to open me up, I am sure it will be when he goes in there to take a peek. I don't think the defogram shows EVERYTHING and when he gets in there, surely he will be able to tell if there is more going on???? I worry that there is more wrong than what we know...I think this way because nobody else has the same difficulty as I do getting the poop out of my body.

flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 5/15/2010 8:03 AM (GMT -6)   
Tracy,

You should be fine when it comes to returning to work 6-7 weeks after surgery. You'll also be able to eat all of your favorite foods and wash it down with an ice cold Coke! :-)

When it comes to sweating, that shouldn't be a problem either. I live in Florida cool so I'm familiar with sweating. The Coloplast Assura Extended Wear Wafer #2833 (with matching pouch #13986) has never let me down!

Also, you won't have a problem sitting for 8 hours and bending to reach the brake.

Hope that helps put your mind at ease!

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/15/2010 9:52 AM (GMT -6)   
Cecilia, thanks for replying. It is good to know I will be ok in the heat. That is my biggest fear, that the bag won't hold up in the heat. I am going to call Edgepark and see if they will send me a sample of the Coloplast Assura Extended Wear Wafer with the matching pouch.

I have also had 4 children, the biggest, 10lbs. 13. oz, and my stomach is a wreck from this. Stretch marks and lots of excess skin to contend with. I hope the bag doesn't have a problem sticking on this maze of destruction! LOL

I am also curious if the bloating will go away with the ileostomy. I now suffer horrific bloat where I look 6 months pregnant.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/15/2010 3:47 PM (GMT -6)   
If they won't send you some, I will!! :-) The adhesive on these wafers is amazing. I've spent the entire day swimming and still got a week's worth of wear out of it! Don't worry about your tummy not being flat, you can always lay down and spread your skin out smooth while applying the wafer to get a good seal. I think the bloating will go away once you have an ileostomy, since you won't be constipated anymore.

{{{Big Hug}}}

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/15/2010 3:54 PM (GMT -6)   
Hey, if the painful bloating goes away with the ileostomy, I think I will just have to keep it. How long can you keep a temporary closed loop ileostomy anyway? I sure hope I don't hate it.....but it has got to be better than the way I am living now....

Dunchad
Regular Member


Date Joined Sep 2009
Total Posts : 36
   Posted 5/17/2010 6:26 PM (GMT -6)   
I've had one since April 20th. Was told I had a 10-15% chance to have one. So I was a little sad and shocked. Gonna have it at least two months. I was cut open from belly button to groin. They removed two pieces. Had post op problems. Just started eating May 10th. Now the good news i've been able to eat pretty much anything. But I avoid raw things and wheat bread. Have'nt tried any carbonated drinks yet. So far only had problems with the bag on one day. When my output was through the roof. Ended up back in the hospital for dehydration. Good luck to you!.
Diagnosed Crohns 02. Just had a resection April 20th 2010. Two sections removed had a fistula into the bladder. Also have a temp ostomy. GI said I could stop the 6mp, but going back on remicade.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/17/2010 8:00 PM (GMT -6)   
when you go for your markign with the ET show her the motions you make at work, to make sure you get a good placement.
As for the heat, i know all about the hot humid summer (NC here) and i just have to change more often if its really bad.
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!


Sesberry
New Member


Date Joined Apr 2010
Total Posts : 9
   Posted 5/18/2010 8:26 AM (GMT -6)   
My husband was given a booklet that said Coke is a brilliant emergency remedy for watery output - so yeah, coke is good!! Good luck :)
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