Hi, new to this site. Sure wish I had found this site back in 2010 when I had to have my rectum removed for Stage II cancer. I had an ileostomy for 13 months then had a reversal at my ex-husband's insistence. I stumbled through wearing bags, accidents, embarrassments, then after the reversal I managed to survive...on loperamide. I take 3 2mg tabs every 4 hours, but it allows me to live a semi-normal life as long as I stick close to home. The frustrating part of all this was the lack of information out there, or anywhere for that matter. I was pretty much left to figure things out on my own. Everyone seemed to be of the opinion that I had survived, what more did I want? Well, even though I have survived for 10 years after my reversal, I never really got answers to my questions. I experienced a few bouts of intestinal blockage and trips to ER taught me that all they do is hook you up to morphine for the pain and an IV so you don't dehydrate on their watch, then send you home after they determine you have passed the blockage. Which left me with the impression that they didn't know what to do about it either. I stopped going to ER. Does anyone know where I can find real information on intestinal blockage, causes, treatments, etc. I'd appreciate any information, probably as much as anyone reading this wishes I had just asked this at the beginning. Sorry about that, but thanks for any information.
Hi Beezkneez i,ve had my ilieo. for 30 some years now and back then there was no internet, i was handed a book the second day after surgery on colostomies, well still loopy on meds i didnt know what the hell i was looking at even. As for blockages i found it was trial and error for differant foods, that and the fact that i have crohns which causes scarring and narrowing of my stoma and ilieum, but the thing to do if output is,nt normal is to increase the amount of fluids like fruit juice or carbonated drinks.
Would you consider having another ileostomy? Products have improved and you wouldn't have to constantly worry about being near a bathroom; although depending on the individual,
some ostomates are vigilant about knowing where the bathroom is outside of home.
Hi Beez,
Welcome! Well.......there's a lot of info out there if you Google "rectal cancer life after surgery". Everything from higher level medical videos to regular folks discussing their situations. Finding out what's going on with you should be pretty straightforward, so if your Docs aren't performing to your satisfaction.....get new Docs! Call the Mayo Clinic in either Phoenix or Scottsdale and let them take a look at your situation.
https://www.mayoclinic.org/patient-visitor-guide/arizona
;O)
Just thinking out loud here….have you tried not taking the meds that you do to slow down or thicken your poop? Cause what you're taking is made to basically plug you up. Sorry, I'm not into medical terminology, obviously. 😂
Hi! I was just reading a little from your profile page. This community is still a good fit for you. There are some people who have had multiple reversals/ostomies. I hope with whatever direction you choose to take next you do it for you (in regards to you having the reversal at your ex's insistence at the time). My husband was actually the opposite...he wanted me to keep my ileostomy because he thought I would be happier if it gave me more independence. My husband is also terrified any time I am put under anesthesia b/c as he likes to tell people I've almost died on him 3 times. But I wanted to at least try for the reversal...the new connection had already been made inside my body and was just waiting to be used and if I'd decided to go the permanent ileostomy route I would've needed another surgery anyways. I'm thankful I opted for the reversal because my ileostomy had been masking some motility issues, so trying to sort through that right now.
Stick around and you'll see I don't like to agree with Bob b/c he calls me crappy, but his idea to try Mayo out in AZ doesn't sound like a bad idea to me considering the description you've given of how your healthcare has been handled so far. Now I'm not trying to talk you out of the Mayo idea...but Cleveland Clinic actually outranks Mayo when it comes to these types of surgeries, and I bet you could get a virtual consult. If you're on IG there's a guy I follow I think his username is Larry's Fight? He lives out in AZ but comes to Cleveland for bigger treatments/surgeries. I'm not sure how they collaborate with his local medical team but it sounds like they have a good working system between the 2. I'm not sure if his colorectal cancer is in complete remission or not. If you want me to verify that's his username I can, it's a public account, he has A LOT of followers. If you're even a couple hrs driving distance of the Mayo locations in AZ, I would start there. But if you ever want to try the Cleveland route my surgeon is the BEST :) I'll find out on Monday if my general GI Dr has a new game plan for me or if he's going to send me back to the GI motility team. I moved most of my medical care under the Cleveland Clinic umbrella after I'd been told multiple times I was a complex patient. Places like Mayo and Cleveland like the challenge of complex patients. If you ever do end up in Cleveland, I'll visit if you want a visitor :)
Hi Ron i've gone through the same thing. just because it's on the internet doesn't mean it makes any sense to me then or now. I agree with you about the trial and error for the food. Isn't it frustrating though that the same thing you ate just fine one day wreaks havoc on you another day? One doctor told me the scar tissue was to blame for the blockage, stands to reason that scarring would narrow the passage of the intestine just as it would the stoma. I hadn't tried carbonate drinks as I know the one thing that truly makes my intestines go crazy is sugar, but i think i will try the sugar free drinks, don't know if artificial sweetners will do the same, but i will try. thanks for your response, i appreciate you.
Hi Audrey, i considered a reversal of my reversal for a few years but finally decided against it. I'm just not up to more surgeries, does that make sense? I just want to learn how to deal with the pesky blockages. Ideally, how to avoid them. Short of cutting out fiber all together, I am at a loss. Thanks, though, i appreciate the imput.
Hi Audrey, i considered a reversal of my reversal for a few years but finally decided against it. I'm just not up to more surgeries, does that make sense? I just want to learn how to deal with the pesky blockages. Ideally, how to avoid them. Short of cutting out fiber all together, I am at a loss. Thanks, though, i appreciate the imput.
Hi beez
Welcome to the site lot's of good information regarding any topic you can think of, also plenty of humour too. Xx
Chew chew chew. Blockage is usually caused by adhesions and or scar tissue. Foods get stuck. That's why you have to masticate very well. Lots of fluids. I've found that I can't eat Chinese food.
A lot of trial and error on what foods your gut can tolerate.
So true about scar tissue and adhesions.......they really suck. But what's worse is they keep getting worse. They don't just form and stop. So if you're having blockage issues due to either scar tissue or adhesions.......you best plan on addressing it before it becomes life threatening. And stretching scar tissue doesn't work. Been there, done that. It has to be removed surgically, in which case the new connection(s) will also form scar tissue there the ends are rejoined. Aren't intestinal disorders fun?
Seriously, don't wait too long to figure out what's going on..........these things don't fix themselves and only get worse with time. Surgical outcomes are always better when it's elective and not an emergency where you didn't have time to prep.
;O)
Hi. I am curious how you got a reversal without a rectum?
So sorry you are going through all of this.
It's best to ask questions about preventing blockages, etc and how to handle them from your gastro doctor and if you don't have a good one you may need to shop around. It's like having to kiss so many frogs to find a good one. My third is a charm.
Basically, for myself, I need to avoid eating a lot of bulk and fiber foods. When I feel it coming on, I drink chamomile tea to ease the intestine and rub my tummy lightly. Although, I know when I was too blocked to even want to put anything past my mouth or touch my tummy. The only thing that helped then was like what you had was the morphine and the iv. But, if you get too blocked, they may need to surgically remove the blockage so its best to go to the hospital to get checked out.
Hope that helps.
I have moved all my GI care to Cleveland Clinic also. It's a 5 hour drive one way but it has been so worth it. I was being passed around from doctor to doctor who didn't really know what to do and told I was a complex case also. The stoma therapy team there is awesome, too! Wishing you all the best as you make the best decisions you can for yourself! Go Girl!!!
We should talk about our favorite Drs/surgeons sometime. It's about an hour-ish drive for me depending which location I go to. Thankfully my appt. this afternoon is virtual to go over tests/procedures I had last month. Parking at downtown main campus stresses me out more than having surgery 😆
Hi, I thought that I would put in my two cents about blockages. I have also had them and they are awful. I was never given morphine in the ER as pain meds slow you down. I have been admitted and had the dreaded, awful NG tube inserted to move everything. One time I was in so much pain I would have inserted it myself. Despite the doctors saying that food had nothing to do with the blockages and it was scarring and adhesions, I disagree. I have eliminated the foods that seem to trigger it for me. Mostly fibrous fruits like grapefruit, oranges, pineapple, apples. Also if I get a blockage now I start the clock. You have about 12 hours to start moving your gut before you absolutely need to get to the hospital. Like someone else mentioned I start by lying on my side and gently massaging my stomach. A heating pad helps as does a warm bath if the pain isn't too severe. Gentle stretching and exercise a little has helped move it along too. Over the years they have become less frequent. In early days I spoke to my surgeon about removing the adhesions but he said it would cause more scarring. Good luck!
Yeah, adhesions are a 😖, and your body makes them with each surgery. For myself also have a hernia now from repeat operations, and when I go to hospital for blockage or pain they always want to do a CT scan . Any idea how much radiation that is? And I' ve had 17 over the years. The hernia won't get fixed because am on Medicaid and doctors don't want to work on me for $$ reasons. Living with the " bag" , and don't think I'd survive another surgery.
This thread is a bit old, but I can't pass up the comment about Chinese food. I heard the same thing from my ostomy nurse in the hospital. I felt I had to correct her, as she was talking about American Chinese food which is often cooked in a sweet slippery sauce that is hard to chew properly. I have not had a single issue with the traditional food my Chinese wife cooks! :-) Also, there are usually plenty of ostomy friendly items on most decent American Chinese restaurants.
--Daniel
Hi Bob,
A CT scan exposes you to between 10 and 20 mSv, depending on whether they use contrast or not. That's equal to between 3.5 and 7 years of background radiation per scan, but that's using today's lower dosage scanners. CT scans from just a few years ago used a lot more radiation than they do today, since the scan times have gotten much shorter. So it would be hard to guestimate how much total exposure you've had over the years, but I don't think 17 scans sets any records. But you've got me beat by at least 7, I'm guessing. I never kept track of how many CT scans I've had......it might be interesting to figure that out. But then again, maybe I don't want to know.
;O)
I've had 13 CT scans since the 8th of December 2022, plus 3 X-rays. Still not glowing in the dark, but I do wonder just what the effect on my overall health has been.
--Daniel
Daniel,
my Gi Dr back in Chicago (a decade + ago now) was really concerned back then about the radiation in ct scans, I actually don’t recall him ever ordering one for me. I think he did other tests a lot. But I had a situation where I was pregnant, very early on pregnant, they were leaning toward appendicitis, but I wouldn’t let them do a ct scan because they couldn’t tell me what it would do to a baby at that age of gestation. So they were relying on ultrasounds and blood work. I talked with the surgeon on call b/c of course it was an emergency visit and told him I know I would do fine recovering from the surgery and there was no evidence that it would cause any harm to the baby if their goal was to be quick and have me under anesthesia for as little time as possible. Based on what even I could see on u/s and blood work I told him to go ahead and do the surgery without confirming it with a ct scan. I still almost lost her-they could never tell me why or why suddenly everything turned ok, but she’s great and drives me crazy every single day.
My husband says she’ll either be head of a cartel or president. I‘M trying really hard to get her and her fierce spirit going in the right direction 😆
One of our regrets is that we did not have a daughter. Instead, it was 3 sons. Two of which came 3 minutes apart. My wife had to spend 12 weeks on bed rest while carrying the twins and she needed a C-section to get them out. Unlike our first born, the ob/gyn did not allow her to suffer through 18 hours of labor and did the C-section as soon as they were sure she was ready. That was the end of her interest in having any more children. So, no girls. But, I was allowed to watch the entire operation. It was fascinating. For me. Not for her. :-)
