Home » What Having Your Colon & Rectum Removed Is Really Like | Let's Talk IBD | Thủ thuật hữu ích về let’s talk 1

What Having Your Colon & Rectum Removed Is Really Like | Let's Talk IBD | Thủ thuật hữu ích về let’s talk 1

37 thoughts on “What Having Your Colon & Rectum Removed Is Really Like | Let's Talk IBD | Thủ thuật hữu ích về let’s talk 1”

  1. I admire your ability to be so open to tell your story. I’ve had the same operation. Full Panproctocolectomy but have severe small bowel syndrome with three previous operations on the small bowel

  2. No matter what you would talk about I would probably watch it just because I like that you throw humor in I like that you're down to earth and again your personality just shines through and you're great. Sorry you had to go through everything you had to go through for so darn many years but it sounds like you've got a good handle on things and I wish you nothing but the best🥰

  3. I had a proctocolectomy when I was 27 back in 1988. I am now 60 years old my worst complaint is painful sex and I blame it on them sewing me shut too close to my vagina. I am waiting to see a plastic surgeon to see if they will fix this. Otherwise, this surgery saved my life and couldn't be happier to have "Oscar" on my side.

  4. my husband has had prostate cancer twice. The first time round they did 38 radiation treatments, the last 10 double. He did very well for 8 years and then it came back, same numbers the whole thing. He had very few options left so he went for ileal conduit surgery. Unfortunately, the prostate was fried onto his bowel and while trying to remove it, the surgeon cut the bowel. My husband had to have an emergency colostomy surgery in the middle of the other surgery — it took him 3 years to completely heal. His ostomies are not in the usual places and he is very self conscious about them. He doesn't feel comfortable changing a pouch anywhere except home and as a result — we don't go any where and aren't intimate. Actually not intimate since the radiation. We have a good relationship but it lacks what it used to have.

  5. Having to still pass mucus with an ostomy sucked. I thought it was so weird that stuff still came out. My ostomy was reversed and I’m so afraid to have to get one again because my skin reacted so bad to the adhesive. No matter what I tried it got inflamed, oozy and even ulcerated in some spots. I put on crusting powder, tegaderm….nothing worked. It was so bad at the end that the bags wouldn’t even stay on, I had to tape them on around the edges.

  6. Same. I’ve had the Ostomy bag for a year now and decided not to do the j pouch. Yes the bag is no fun but there are also downfalls with a j pouch. I didn’t want to continue with more surgeries or chance on needing a reversal. I am 3 month out from having my rectum removed. It is what it is I’m alive and can live a pretty normal life. I’m too old to worry about vanity and lucky to have a wonderful girlfriend who supports me

  7. Just read some of your comments.
    I have not tagged 'thumbs up' so many times! Ever! Most of these are better written than anything I can write. You are an inspiration. And a gifted speaker/teacher. Thank you from everyone! Please carry on!

  8. I had ileostomy with complete colectomy (colon, rectum & anus removed) as a single surgery 38 years ago at age 28. You are correct that the perineal wound is much more painful than the abdominal incision! I had ulcerative colitis- why do they believe you had crohn’s & not UC? On the upside, 10 years after my surgery I got pregnant (no help needed!) & carried my son to term. He was born by C-section due to nothing to do with my surgery.

  9. I have Hirschsprung's Disease and had my colon removed in 2008 and a year later, due to diversion colitis, had my rectum and anus removed. The biggest thing I have dealt with is scar tissue from the surgery. I had to go to pelvic floor therapy to get help in loosening the scar tissue. I too was not qualified to have a J-Pouch, due to how damaged my rectum was, so I have a permanent ileostomy.

  10. I am trying to think of an original question to ask? Ok, here it is: Does actor Alexis Bledel know she looks just like you? I have IBS, but not a bad case. You generously shared your very personal and painful story to help others. You are an extraordinary person, and an effective communicator. And clearly nothing can conquer your humour, courage and determination. There must be something wrong with you? Ah yes, I have got it, you dog-ear your books! Disgusting.

  11. Imm a man n i learn a lot watch n what your experience. U might think im crazy but doctor or clinic dont really tell u before u get this done. Why cause everone body us different. But u done a perfect job n well done for a nurse. Thank u for.explain n teaching me more out in life..may god bless n a better recovery. Have a nice day

  12. I to have crohn's, I'm in my 60's. It is hard to live with. I never had the surgery you've had. I have had bowel recession. The bathroom is a place I go to a lot. It gets old. Glad you're doing great.

  13. I'm impressed! You're willingness to share your story is so commendable! I can only imagine what kind of thoughtless comments you get. Sorry to hear about your ig account. I don't get any of the social media platforms. They allow the crap to remain and remove educational information. 🙄 I don't have crohn's disease but I liked learning about the things that could be involved with having it. Thank you Maggie! Best wishes today and always. 🥰

  14. Your attitude is inspiring. I have Crohns too, though my issue is mostly my ileum and is manageable with meds right now. I’m so grateful mine is as mild as it is (though I know it could (will?) get worse over time) and I haven’t had to deal with any major surgeries or anything but I still get very depressed/negative about it sometimes. You were so young when you were diagnosed, but at any point were you dealing with family/friends/etc not believing your issue was as severe as it is or downplaying your pain, etc? That’s definitely been a struggle for me, having an illness that can’t always be seen. People tend to think I’m bailing on things when I say I’m not feeling well, and I even had one friend pretty rudely tell me she has a bathroom at her house so that’s not an excuse to get me out of plans. I know it’s not fun to think about that kind of negative stuff, but how do you deal with it when it happens?

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