notsosicklygirl said...
Vancouver-Girl said...
I've also read ends are done further down so less transit time? Is that right, did you tell me that?
Sorry you're stressed. Vent away, but please keep it respectful. I think pluot was trying to be helpful but I can understand not wanting to be told you have a mental condition. THANKYOU. I really appreciate you understanding specifically what set me off. You and 1 other are the only people that acknowledged that. It was more than once (both posts) and I got fed up. ( I should have handled it better yes.)
I don't come onto to people like I know what is best for them. I can't possibly. I'm not them. Other than her 1 sentence "I think there are a lot of valid reasons to be frustrated with a loop ileostomy (mine was no picnic to manage either)" I really did find the post condescending with too much judgement. Not to mention she misunderstood how "I" was. (I honestly find it disrespectful coming on to people the way she did with me.)I guess it just her way.
In my posts when I help others I actually say "if I'm offbase" or "redundant" or "misreading what you said", forgive me. I acknowledge, I could be wrong where they're coming from.......... Because I don't want to offend them.
The loop temporarily thinned my skin............... :) Not for long! :) I'll get it!
You know, I think I'm more disappointed with the "as Danny put it" the behaviour
of the Loop Ileo. I.............yes, it's a learning curve.
Plenty of people (thankgoodness) have now validated, the beginning was overwhelming or acknowledged it was hard work until they wrapped their head around it and more. Well, if they can do it, I can do it LOL.
Their validation without judgment, was really supportive.
Okay, your end was easier. Okay. And yes, the bag is still there, I get it. It's amazing I'm reading you say it was much easier from an angle though. If my reversal doesn't work, I'll opt for that then. (My reversal is a crapshoot, that's the only reason I say that.)
You asked if I would wear gloves putting creme on my backside. That depends on the variables. Am I clean out of the shower and specifially what area am I going to. haha
I will say this, I keep forgetting I'm trying the reversal so focus on that. So that's good advice you gave. I will say, I'm not mentally negatively impacted the way some think, or focused all day from that aspect on my stoma. It's not a ruminating thing. Some things however, I have to get used to that have frustrated me but ONLY when they happened. Make sense? Learning curve.
You really wanted your loop gone I'm reading. Well, at least you're validating it can be work. Thankyou. And thanks for not reading into my words. 5 weeks. Lucky duck! I have to wait ...............6-12 mos, BUT there is a chance there. People reading might be saying, "I could be so lucky" and I have to remember that.
The end maintains more of your GI tract you said. And thicker output and slower transit. I'm reading your words on another browser. Responding that way LOL. I think if my reversal doesn't work this will work better for me. THANKYOU for educating me and for clarifications.
I love how you said this..........YOU:>I feel like I was more critical of the wafer/bag than I am of my underwear, turn I mean, undies have to be pretty nasty. Someone should make a wipe to clean in there once in a while. People are walking around with smears and poo particles... but the bottom line is, loose stools are bad news.
You're funny ha ha ha. Thankyou so much. I'm not a J-Pouch candidate. I will explain my deal. SORRY it's so long.....................
Okay here's my deal. I have rectal intussusception and anismus, psuedo obstruction. My rectal muscles fold collapse in on themselves. And my muscles when I squeeze, shut the area more. Psuedo obstruction. Part of the small bowel likes to rest on my rectum. If the rectum muscle was strong, my small bowel would not collapse and close that retal area, but it's weak therefore, it does.
My surgeon is hoping my healthy diet of protein etc, will strengthen my rectum muscles. He says it's possible. Maybe is stressed though. Realistic, therefore I am. SO after what I've gone through and 3 surgeries, we're giving the muscles a rest PLUS he said retraining an area, that is now constantly moving things out. Make sense? He said it may work. But may. He said proper food now that I can eat, may strengthen it. I was sick 3.5 years unable to get things out so couldn't eat, I mean I got sick. No one, believed me and wouldn't give me a function test. I had to write an impact letter to a top surgeon finally being my own advocate, he rushed me through the system and has really being trying to help me. I went through med abuse. Many of us do. SO I'm grateful for him.
I'd moved back to Canada after living abroad when I got sick. No one knew me here, not one doc, so they were treating me like I was doing this to myself. Like I didn't have anything physiological going on. I saw a dozen docs and not one would give me a function test. They all stuck with colonoscopy and things I knew would not show anything. Xray, and all the rest. I say function test they get mad. I brought in pics of me healthy, fit, well dressed all of it, still couldn't get through to them.
(That is probably why I went off on Pluot too. I was assigned psyche suggestion through my ordeal by the stupid docs before my surgeon, because no doc would give me a function test so I could get healthy. Acting like, I just decided to stop eating. It was really really bad. That's when I was angry, LOL plus sick.)
**The other one above this keeps telling me I'm angry now and I'm not angry. For what? I got medical help finally. It's just the same thing PLUOT did. Assigning things that aren't true. Yes, I can be sarcastic but who needs it? Now another one is using sarcasm like I do saying I've got deeply embedded hatred because of my thread title. know they're just "poking me" and faulting me from loyality to each other.
But being respectful is a 2 way street. It's like they have enabled each other but have still not even acknowledged what you did, in order to qualify me the bad guy. That's not very honest.( Now a 3rd, NiceCupofTea is insulting me saying I have mental issues.) All because I defended myself.
And now it's a pack animal gang mentality. First time I've come across this. This is like the LA riots.**
Anyhoooo.................continuing:>
I was so sick and emaciated and using enemas and laxatives to move things out, I would finally stop eating because those were so so hard on me. I mean they hardly worked. I couldn't work, I finally lived on couch sick. My mother did my shopping etc
It got so bad, I had lay a certain way to get feces out. I had to tape a garbage bag to my waist, lay on my couch after high dosing laxatives and get it out that way. It would only travel out of my body, with me horizontal So my bum was on couch, bag tape and resting on floor, and knees bent with feet on floor. BUT back and abdomen horizontal on couch. I ate so little a few times a week and it would take 48 straight hours for 1 movement to come out. I couldn't go through it all the time so had no choice but to not eat.
Turns out my colon was twice the length and part of is was literally flaccid, (which is why the only way it would come out was me horizontal.That was the only way it could stay
open enough for some reason), and all markers got stuck on 1 side from my function test. So a colectomy was first. I may not be in an ileo had I been tended to in a timely fashion. Many I know, share my story.9 mos after colectomy that wasn't working, not going still so unable to eat, and then a pain started, and I checked myself into ER at my surgeons because I still couldn't go. We did all the imaging, nothing showed up. He said "ileo", then Nov 27th/2015 he
opened me and found adhesions and twisted small bowel. First time he saw what happend inside of me so extreme. We got our answers why my colectomy was so so bad and hadn't worked.. He said this must have started right out of the gate of colectomy Feb/2015. We hoped fixing the small bowel would prevent ileo but it didn't. I still had problems. Dec 15/2015 loop ileo. So he gave me a 2nd surgery, loop ileo and now 'we're seeing' how my muscles strengthen and area gets to rest.
I was in hospital from Nov 23rd to Dec 23rd. But my team was so so respectful. It actually went by fast. I was still super sick and checked in at 89 pounds. Now a month and 10 days or so later, I'm my usual 115. :)I looked like a holocaust victom a lot of the time it was that bad. Hard to believe, docs sent me home in that shape with no function test. I was dying of starvation. I was so so hungry all the time. If you can't get it out, you can put it in. Hard to believe. And I'm not embellishing.
Thanks for reading. That is my deal and why I landed here. They say it's progressed from a child in that, I had bad constipation growing up, back and forth. Then it started to progress again. I thought my bowel habits were normal LOL. I didn't know I had a form of IBS.
I really appreciate you. Thankyou, so so very much. I think I know how and where to proceed forth.......................xoxoxxox
You know Notsosicklygirl, it FLOORS me how many with UC, or function problems like myself, all of it, get ignored and made more sick, because these docs don't refer, or believe the patient, or have a clue. I mean...................I've heard so so many stories like mine it's unreal. We know what is going on, what tests we need, but our doctors don't.
Post Edited (Vancouver-Girl) : 1/28/2016 8:32:22 PM (GMT-7)