What I am looking for is someone who either had an Ileostomy and had it reversed, or someone who had a reversal, but went back to a stoma. I'm due to make a decision very soon, after waiting for over 5 years, as to whether I keep my stoma or have it reversed, but can't find anyone who has any experience of this situation. Desperate to talk to anyone who is prepared to chat about their experien ...
What you do depends on why you had the ileostomy. Ulcerative colitis? Crohn's? Ischemic colitis? How functional is your rectum? Is your rectum inflamed?
People with ileorectal anastomosis usually ...
Jan 28, 2023
I had rectal cancer and was told there was enough colon to never need an ostomy. Nine years of suffering from radiation was a different story. I had a temporary ileostomy for three months at one p ...
I was in a motorcycle accident last August. Very lucky to be alive. I broke my back in three places. I have done spinal cord damage. I broke 11 ribs and partially collapsed one lung, and the other lung was also affected. This led to being on a ventilator, which then led to having a tracheotomy. This eventually led to pneumonia, and the infection settled in my colon. I couldn't get rid of the i ...
Turt,
I have not had that operation done to me, but I do have some advice. The success rate for the operation you are describing is around 75%. But a lot of things come into play, and you don't wa ...
Jun 07, 2021
Dear Turt in West Virginia,
In 2016, I also had my colon plus several inches of small intestine removed due to an infection caused by Clostridium difficile bacteria. An infectious disease speciali ...
how much of your colon can be removed? and still go thru a reversal with out ending up in dialises and or the other option i was told is that if the colon was to short even tho not on a bag i would know of every bathroom, outhouse,do to colon being short it would be no different then being on a bag but with out a bag or end up with a ileostomy and relocation of were my stoma would be move to ...
J" pouch:
Usual candidates are those who have had their colon (large intestine, large bowel, all the same thing) removed due to UC or Familial Polyposis. The anal sphincter must be free of dise ...
Sep 26, 2009
Well I've always wandered since I heard the term. I had asked my surgeon about the possibility of having a reversal and in his nicest way told me I could ask any questions I wanted but in the end ...
Hi there. I've been lurking here for a few months and have found information here to be invaluable. Thank you so much for this resource and to all of the contributors.
Back in January of this year, I had a perforated colon, most likely as a result of a diverticulosis episode. Long story short, I had an emergency colectomy. There is still a tiny smidge of my sigmoid colon remaining, and my rect ...
Thank you Jodie and John! Yes - I met with my preferred surgeon on Friday and he explained this exact end-to-side connection! The other surgeon very clearly called this 'geometry' a 'j-pouch' - it ...
Aug 27, 2023
Yeah… even if it was a terminology mix-up on behalf of the one surgeon… that would be a no-go for me.
Hello,
I lost my large intestines in 2012 due to RA. My RA is so bad I've lost most of my organs. It's now in my kidney, my left lung, my liver, etc. My wrists are so bad I struggle to care for my ostomy because I cannot shower alone, open anything, cook, drive, clean, or do laundry. I'm homebound.
Can you tell me who you see here? Who did your surgery? Do any of you have a Jpouch? If I can't ...
I had my ostomy work done by Dr. Bashir Safar at Hopkins. This was my 19th and 20th surgeries. I had a lot of damage to my abs and skin because of exposure to gastric juices from an abdominal fist ...
Jul 19, 2019
Yeah, I had an appointment scheduled with Bashir last year when they thought I had a stomal hernia. He ended up not showing up due to an emergency, but it turned out it wasn't a hernia.....so I di ...
After having anal cancer in 2014, I have had fecal incontinence from pelvic radiation. I had the Medtronic Interstim device for 3 years with very little improvement! I had it removed and my surgeon suggested I get an ostomy until something better came on the market for incontinence. I did that because I was told I could have it reversed! After the surgery, now 6 months ago, I hate it because m ...
Hi KathyMac 423! First, I'm sorry to hear that you had anal cancer and hope you are in complete remission. What I don't understand is if you have a colostomy or ileostomy? If it's an ileostomy, I ...
Jan 10, 2019
KathyMac 423--This is out of the box, but as you are in Florida, have you researched the BCIR operation done at Palms of Pasadena in St. Petersburg, Florida. Their surgical procedure is a speciali ...
It's been two weeks since my ileostomy surgery and I'm still in the hospital. First complication, 3 days after my hemoglobin was at a 5.3, yup should've been passed out. They found there was an 800cc hematobin so I had to get cut open again, best part, the doctor said it wasn't even on the side they really operated on. 2nd complication, I had a small blockage, my bowels didn't fully start back ...
Are you still in the hospital? Our stories sound similar.
May 30, 2016
Stories
Once upon a time, there was a little girl named Alice. She lived in a small village called Wonderland. Alice loved to explore the forest near her house. One day, she stumbled upon a magica ...
Hello!! I have had my ileostomy due to Crohn's Disease since 2009. It was my understanding at the time that it was permanent and over time I accepted it and went on with life. Recently, my gastro doctor asked me if I'd like to have a reversal done and that my Crohn's has been in remission. I have been cleared by the colo-rectal surgeon and all they need now is my OK. I have never really though ...
Good grief, how in the world did they fracture your skull? Did you fall off the table? I used to work at the hospital here. Seen many brutal surgeries, been through a few myself, but a skull fract ...
Oct 18, 2013
Dear Sorchiaxmlo/o,
I have just read your background story and found it heartbreaking. o/o
What about the Obama Care we are hearing about? It's all over the TV that the USA is going to start up a ...
Evening everybody,
I've been absent from this site for quite a few weeks now because I've been very busy with uni. It turns out that the subjects that the uni recommended that I study this semester were recommended with them thinking that I wanted to finish at the same time as if I hadn't missed a semester. Wise move.
Anyway, it's getting to that time where I need to be seriously considering m ...
Hungry Hamster,
There's a great thread on this topic which you will have seen. It seems to be a choice for and specific to the individual as to whether the J pouch or stoma works. I don't think it ...
Sep 20, 2017
Hungry Hamster,
There's a great thread on this topic which you will have seen. It seems to be a choice for and specific to the individual as to whether the J pouch or stoma works. I don't think it ...
Hey again. Apparently, I'm a social one tonight.
Just curious if anyone experiences this.
When my bag fills up to its limit, my output stops. Like completely.
I can sleep through the night now knowing that a full bag won't fly off. There's no pressure, no signs of a potential blowout... nothing.
Then when I empty, things start flowing again. I usually have to empty again within the hour of wak ...
I typically wake up to empty because sometimes I get lucky and somehow my body knows when it's full. Other times, I wake up in the morning and it's filled right up.
May 18, 2023
My output doesn't stop at night, but I do sense when my bag needs to be emptied (or burped if I'm really lazy), and I wake up. Except for the expulsion of output from a partial blockage a couple o ...
Hello Everyone!Over the past week or so I have been contemplating the concept of ‘buyer beware’ with regard to those brave (if sometimes gullible) people who offer themselves for clinical trials where surgery is involved. There are so many aspects to this, notwithstanding my deep mistrust of organisations that send people to ‘war’ but don’t take full responsibilit ...
Another feather in your cap, Bill my friend. The negative consequences are thrown away like yesterday's fishwrap.
I was a very early recipient of the J-Pouch. The pouch rests just about where th ...
Feb 11, 2022
Hello Magoo.
Thank you for your reply to my blog. I do so agree with you that the medical profession should be non-profit(along with many other aspects of life). However, there are so many making ...
People with ileorectal anastomosis usually ...