Phantom sensations after colostomy: Seeking advice

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Dragonfly64

Hi all,

This is my first post. It's a sensitive subject, so I hope it goes well!! I have had my Colostomy due to Crohn's since 2016. Due to having to have 31 rectal ops, it was finally taken out mid-2017. Yes, the ostomy is now permanent. Overall, it has been trouble-free, but over the past month or so, I have noticed that I have pressure in the rectal area almost constantly. I have this overwhelming feeling and need to push as if I were to open my bowels on the toilet...which, of course, I can't do. I feel I should talk to my surgeon, but I have a feeling he is going to tell me it's normal or it's phantom sensations. Any advice would be so appreciated...Thank you in advance!

Past Member

Hi 64, you answer your own question. Yes, I have the same phantom feelings. Just a small leg in the pelvic area for intestines to sit. It takes 6 to 10 years for slow resurrection. Eat a lot of protein. Meat, meat, and more meat. Grind and chew meat down so no blockages. Your body will adapt with or without you. In 2014, I still have the feelings you talk about. Jerz from Baltimore.

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Xerxes

Hi dragonfly,

I still get that feeling even after 39 years with an ileostomy. However, I have found these pangs to be periodic and only last for a short time. Sometimes, there is a buildup of mucus in the remnant of the colon that will cause a more prolonged cramping feeling. It disappears when the mucus is passed. This might be your problem.

X_

Michoo

It will go away in time. Everything at first is new and it makes you think. I got to a blockage at the beginning, meaning after surgery. It was not very easy. But we learn one day at a time for our body to live in a whole new way of life.

ejbetty

Hi

I had a proctectomy in June 2016. That's the removal of my anus and rectum. I was having that same pressure, plus I was having seepage from my anus. It's real. Ask your surgeon about it.

Good luck,

Betty

 
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Immarsh

Hi, my name is Marsha, and I've had my ileostomy for more than 50 years, since I was a kid of 15.

The doctors had to do the surgery in stages, so I didn't have the rectum/anus and sigmoid colon removed until I was 19. After the additional 4 years, trying to heal it hadn't worked so I argued with my parents and doctors to have it removed. I never regretted the decision....knowing back then, that I'd never risk a hook up....even if some time in the future it would be possible. I was very lucky, and the rectal incision healed relatively well. I didn't know until years later that it can take some people years for the area to heal.

However, like you, I'd often have what I called phantom pain... feeling like I had to "poop". According to the doctors, that feeling wasn't unusual. There are a lot of nerves, scar tissue, and lesions in the area, and I'd feel it most often before, during, or after my periods or when I used a tampon.

I don't have that issue anymore (I'm 69) BUT I have occasional pains during sexual or intimate times. Sitting down on the edge of the seat sometimes stimulates that pain, and riding a bicycle has been painful since I had the surgery (even when I changed the seat). Sometimes, the pain just happens. Just to be sure that there's nothing physically wrong, check with your doctor.....even if it seems embarrassing to you... Best of luck...and please stay in touch... Marsha

Immarsh
Hi....It's Marsha again. I just noted that you're from Australia. We have that connection as well. My son met a lovely Australian gal here in the states and followed her home...to Oz. They're married for more than 10 years now and live on the Gold Coast, about an hour south of Brisbane. I've visited them 7 times so far, and each time I go, I visit another city. To date, I've been to Melbourne (and loved it), Sydney twice, and Cairns, the Great Barrier Reef. Fabulous, like swimming in the pages of National Geographic. Since my grandsons were born, I spend more time exploring local areas around Brisbane....I hope to go back this year... Would love to chat...if you'd like to write. Marsha
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