Need answers for ileo coming up.Redundant lazy colon/anismus/rectal intussusception.

Hi,

Respectfully I'll start by saying please don't post to me how to feel etc.
I read on these forums, occasionally post if I have a question and
a few come in like they know me, my lifestyle, body all of it and just start telling me how to feel. Please respest, I'm grown, I feel the way
I do, I'm sane, and I'll maneuver through this using emotional intelligence
and what else works for me. One person's power is another person's poison. That's my quote actually. THANKYOU for your understanding.

A) Background. Busy career and, workout girl. Six pack abs, trained others, body conscious.
This is what gets me in trouble, people want to say look at others like you and link them to me. I know this. I'm not here for pep but appreciate the kind gestures. Just need these questions answered.
This is how I keep my self esteem through serious things.

**You guys are great from what I've been reading. :)

1) Lazy redundant colon=cut out Feb 2015. Took 3 years to get the attention of top surgeon after all others wouldn't help. I became more compromised using more enemas and laxatives and may not have needed this had they believed me.

-had 7.5 ft of large colon instead of 4.5 like average. Markers stayed on left side never coming out after 7 days.

2) I still have 2 issues left.



i) Rectal Intussusception. My rectum telescopes preventing feces evac so sits in folds. Plus the opening is shut to 2 cm.

ii)Anismus. If I get the slit open, and some worked out of folds jabbing up into huge flesh ball, I push and the whole area squeezes shut.



3) Methods of resolution tried.


i) Through this whole deal before and after total colectomy, I did my own version of biofeedback, unfortunately I am too compromised due to the telescoping. If not for that, may have worked. I completely isolated which muscle did what when I pushed with ab and pushed with what I can that moves in rectum. Surgeon very respectful to me due to my body awareness and mind and my trouble shooting.

ii) Bought Pratt and Pederson Speculums to self dialate.

iii) Botox Sept 11 at entrance of anus. Worked in lower rectum widening it but I didn't need that area widened. But not in my higher up trouble area. opened higher up area, more on day 4 and day 8 because the botox travelled throught puborectalis higher, opened slit and opened and made tube normal. 2 days only I got normal bm relief. I poop after 3 hours of eating, they were huge, and fast and normal and everything emptied. No laxatives nothing. Huge bm. Right now, back to increments of 20-30 jabbing inside of me trying to release 1 meal.

iv) Botox again, Nov 12 2015. This time high into trouble spot. But whole area is morphing worse, it's closing big time, more flesh is telescoping.

v) Last option ileo and it's got to be ASAP. What I go throught daily since 2011 is excrutiating and disgusting and has eaten a huge chunk of my life. Sick of it.



4)I read I can talk to surgeon about where to place stoma, plus bring in stoma pics. TRUE?


I have her body type. Is this a good fit for stoma to be low? Thankyou so much. xoxo-She got some hateful comments on some pics due to her stoma low, ostomy people saying she is not typical. I thought that was so so cruel since she's trying to help and brave enough to show it.xo

http://uncoverostomy.org/2015/10/03/my-ostomy-story/

5) I am readingn about a good belt that is fabric. Thoughts?

http://ostomybagholder.com/ostomy-support-belts/?sort=bestselling&gclid=CIXoz8b7mskCFYVhfgod_6wPOA


Stoma shield for working out? Running?

http://www.stomagear.com/?gclid=CN-S7tm0l8kCFUVffgodmOECYg

6)Re: Bags

-I corresponded with someone who uses closed end bags with ileo. I like the sound of this.

Thoughts?

* so sick unable to pass but 1 bowl soup etc every few days. Sick, skinny, you get the drill. No life, bathroom life.

7) Doc said he can't do intussusception surgery on me because my large bowel had to go and they need it for successful intussusception surgery.

-Why? They can pull/stretch telescoping rectum, attach to large bowel, that could fix it. Cutting out what they need to structurally of course but using large bowel as the "fixture" to hold it all.

-Since I only have the small intestine now, there is nothing structurally to fix the telescoping rectal intussussception too.

-Plus, if I had small intestine or large colon intussusception, they could still do surgery therefore. But I have rectal intussusception with no large colon therefore, no more surgery options other than ileo. :(

THANKYOU SO MUCH. I REALLY NEED INPUT FROM THOSE THAT HAVE BEEN AROUND AND LOVE YOU ALL VERY MUCH. I APPRECIATE YOU BEING HERE.

Post Edited (Vancouver-Girl) : 11/18/2015 3:28:46 PM (GMT-7)

I also can't answer on a lot of what you're asking, I'm not familiar with your medical problems, so can't really comment on surgery options. But I'll give what input I can!

My stoma was placed prior to surgery by my colorectal nurse. She said to me that the lower the better; at the time I obviously had no experience so had to trust her, but I believe she was 100% correct for me. The top of my bag is just below my bellybutton. To place it, she got me to sit hunched over, to ensure that the stoma wouldn't fall into any creases on my abdomen. And made sure it was centered in my abdominal muscles. Obviously the position can change during surgery though, depending on what the surgeon finds when they get in there! But it's a good indication. My stoma is a good spout, which I think it important - you don't want it flush to your skin.

I have a belt, from Comfizz. I used to wear it more after surgery, when I felt like I needed more support before my insides settled down. But I don't really like wearing it anymore. Maybe though if you were doing weight exercises, you'd need the support.
I don't have a stoma shield, I would think they're more for contact sport. But they would add extra protection if you were worried about it. Stomas are sturdy little things though!

I use a one-piece drainable. I couldn't imagine using a closed bag for my ileo, it's just too active. Depending on what I eat, I could empty up to 7 times a day. It never really hassle though; I'd say 95% of the time, I'm going to the bathroom to pee anyway, and empty then. I never really have to go for just emptying.
I use the one-piece because I feel like they are more discreet. I know people who use two-pieces would say that too, but it's just my personal preference! I change whenever I shower, and it literally adds about 5 mins in total to my shower routine (between taking it off before the shower & putting on a new one afterwards).

Hope that's some help for you!

Glad to help Vancouver-Girl!

I'm definitely the minority with regard to how often I change my bag. Most people leave their's on for multiple days, up to a week. My personal preference is changing it when I shower, so pretty much every day. I just don't like showering with the bag, and I feel much cleaner doing it this way. Some people say that it would irritate your skin by taking your bag off every day; my skin is perfect. Everyone is different though, you'll find what works for you!

Another tip for placement, it might help to have a couple of pairs of trousers you like to wear. As blksteeda said, her stoma was placed so it wouldn't interfere with clothes. I didn't have anything with me, my surgery wasn't really planned, but it did work out fine for me!

Hi SuperBlanks,

It was brought to my attention I reversed my responses to each of your original posts attaching your name to blksteeda's response and vice versa.

My apologies.

Okay great advice, bring in extra pants. Great idea. I'll do that. Got it with you changing it daily and how you shower. That sounds like me. Okay thanks.

1 piece unit you use. Can't conceive using a closed bag due to how active it is, makes sense.

Okay question pertaining to bags and appliances:>

1)Okay, you change your appliance daily and that is what most people change every 4-7 days?
-Am I understanding this?

2) I am having a hard time conceptualizing sitting on a toilet with an open bag, bag attached to me therefore while it is emptying into the toilet............because I can't conceive why the dirty water wouldn't splash back up onto the bag. Then I have to sit up, get up, with a dirty bag attached to me and try to rinse it off? ((((( :( ))))))

This is very disconcerting for me and why I want closed bags. Can you help me understand how this is done?

Thankyou again for your thoroughness with stoma placement.

Post Edited (Vancouver-Girl) : 11/20/2015 2:19:51 PM (GMT-7)

Yes I change my appliance every day or two, I think I'm one of the only people here who do it this often though! Just what I got used to & what suits me!

When I empty, I sit on the toilet but sit a bit further back than I would when peeing with my legs open wider also, open the bag so the spout of it goes down between my legs & squeeze out the contents of the bag. I used to put down some toilet paper into the bowl before I empty to prevent splash-back, but to be honest, I don't feel the need to most of the time. But that could be something to do if you found splash-back being an issue for you. Then I get about 5/6 squares of toilet paper, fold it up, put it into the spout & swish it around. Then wipe the end of the spout & close the bag back up.
I've also heard of people kneeling in front of the toilet to empty; again, that's personal preference, you'll find what works for you.
To be honest though, I can't see a closed bag working for an ileostomy. Emptying seems like a lot of hassle at first, but you do get used to it & it only adds an extra minute to being in the toilet. Whereas if you're trying to change a bag every time it's full, you need to have so much more supplies with you. And facilities, like water or surfaces to put the things you need for a bag change or somewhere to dispose of the bag you've just removed, etc... Emptying when out isn't usually a big deal, but changing can be.

My ileostomy is also permanent. At the moment I still have my rectum, but I won't be getting it reversed.

Hello Vancouver-Girl. I am in Washington state as well, unless you are in BC in which case we are still neighbors as I am in Seattle. Just wanted to chime in here on emptying the pouch. I know many on this forum have said they sit on the toilet and empty this way. I tried that just one time. For the life of me I don't know how they do it and keep the bag clean. Not only is there the backsplash issue but I was not able to do it without the bag touching the toilet and it grossed me out. I am somewhat of a germ freak (or so my family says ha ha). So what I do is stand, take a couple of squares of toilet paper first and drop it into the bowl so you can empty on it and nothing splashes back. Then I lean forward and empty it. I don't even have to take my pants down, I can just take the bag out the top. Then I wrap several squares of tp around my finger and wipe off any little trace from the opening. They showed me that when I was in the hospital. After I also use an alcohol wipe (I like McKesson brand, the large ones) and I wipe the end off so it's disinfected before I put it back. Don't want residue or bacteria in my underpants either. Maybe I'm pickier than most but it works well and I feel clean doing it this way. Never get any on me or my hands.

How are you doing? I hope well :)