What I've Lost After Colon & Rectum Removal | Intimacy, Infertility, & Adhesions | Let's Talk IBD

Having your colon and rectum removed and your anus sewn shut (also known as panproctocolectomy or proctocolectomy surgery) is not an easy decision. It took me a decade from begging my surgeon to reverse my stoma to begging them to make it permanent! In this video, I reflect upon the things I have had to give up because of this surgery. Even with infertility, pain during intercourse, extensive pelvic floor therapy requirements, and scar tissue and adhesion build up, I am still glad I went through with it.

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*This video is not meant to diagnose or treat any illness or condition. This is for entertainment purposes and to get you thinking! Please ALWAYS refer to your physician for medical care.

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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ostomy #ibd #chronicillness

[LetsTalkIBD]

Thank you so much for tuning into the video! If you liked this, I'd love if you subscribed! ❤

[virginiagrundman]

I'm a female retired trauma surgeon and you have my utmost respect. Hardly anyone in your circumstance would be talking about this. You got guts....uh, an Amazon 😅😅.

[joycependleton]

I had this surgery years ago. The only thing I lost was all the pain and misery I was going through. Because of my colostomy (33 years now)and the proctocolectomy surgery, I am headed to my 74th birthday in August. I had no clue that life could feel so good! It’s like having life and life more abundantly.

[Rigel_Chiokis]

In 2017 my partner was diagnosed with cancer. A scan showed half a dozen large masses in her abdomen. Surgery was scheduled immediately. But when the surgeon had her opened up, he discovered that her entire colon was covered in cancer. So he removed it and created a stoma with the end of her small intestine. Well, she was shocked. It took some time for us to adjust to that, and using the pouches etc. We found a support group that she joined. There was a 22 year old man who spoke to the group about having an ostemy pouch and he loved to do competitive cycling. He talked about how if he ever crashes at high speed, it was going to be a mess. But he refused to let that slow him down. It was something she needed to hear. So thank you for sharing your experience.

[paulashealthyliving]

does anyone else see the irony of a nurse worried about losing her position if she doesn't recover and return to work in a specified time period?
Also you are probably the most transparent person I've seen on youtube. Such honesty is refreshing.

[waynegillham]

Miss Maggie. I have been following you for a few years now and I am confident in saying that this video today is the most poignant and impactful one I have seen. Thank you so much for sharing and providing insight and information to your viewers. You are amazing.

[carolynhudson]

I had ulcerative colitis from 11 yrs old until 24 when it was so bad that I couldn't take it any more and I decided to have pan procto-colectomy surgery. That was 35 years ago and I don't regret it for a minute as it gave me my life back. However, I did have trouble conceiving a child so went down the path of IVF which thankfully resulted in a son being born 10 years later. Interestingly, I conceived for a second time 3 years later without any intervention and had a daughter. I am very thankful that I was able to have children even though it was a difficult path at first. Please don't lose hope yet, keep trying and look into possible interventions. Sending you the best of luck, Maggie. You are amazing and so inspirational!

[JohnKaman]

My story is too long for a comment but briefly I contracted UC at 28, had a portion of my colon removed at 35, 10 years later a surgeon connected my small intestine to my anus and I lived for years without a pouch. What I was not told was that UC can manifest itself in the anus and that happened so eventually I had my anus removed and a stoma created again. That was 20 years ago and I am now cured of UC. My recovery was about 3 months but now I am fine except for occasional leakage problems. We are warriors who survived and still managed to have a life after our disease. Thanks for your videos. I am a man and before each surgery I was told I could have problems with ED. Thankfully that never happened. Courage and be of good cheer!!!

[AusNetFan]

Dear Maggie. You’re a friend magnet. Yes, having surgery is like the domino effect. Other things are affected in the chain. Maggie, you’re beautiful in so many ways. You’re a treasure to Zak, your family, your friends, and us your YouTube friends. You touched all of us. I’ll say a 🙏 for you and Zak. Much 🤗 and 😘 from me.

[sheelfjohnson]

It must have been so hard for you to give up your nursing job caring for people in person, but it seems to me that you're doing a ton of good here, helping people through their medical challenges. Maybe you're even reaching more people this way.
I hope that your efforts at parenthood turn out in a wonderful way for you and Zac, whenever that may be.❤

[twinoakscottage]

Oh Maggie. My husband and I have followed your channel since before his ostomy surgery 7/2020. You have given us so much useful information! We truly appreciate your candor.
My husband had his proctocolectomy 12/2022. The minute they got him out of surgery and into his ICU room, he said, something is wrong “down there.” He is currently seeing a urologist with little to no improvement. I am so glad you are recommending the Pelvic Floor Therapist!!! (As you stated, everything is in such close proximity down there, there’s bound to be nerve issues) Also, my husband had massive amounts of scar tissue from an infection that was a result of his ileostomy surgery in 2020. His proctocolectomy took over 9.5hrs because the Dr had to painstakingly dissect the colon from the scar tissue.
Anyway, THANK YOU for the great information! We will most definitely speak to his urologist about PFT at his appointment this Friday! ❤

[Diarygirl]

AMEN to pelvic floor therapy - I have been recommending your channel to my patients because of your calm and thorough educational style. :)

[hooliganjr]

Wow. Is all I can say. Immense Strength, humility, and educational all in one video. Videos like these should be shown in school to help increase TRUE understanding and empathy. Bless you and your husband...😊

[callummacleod]

Thank you Maggie for this amazing and revealing video. At age 57, I had my proctocolectomy surgery, and though it was a long and hard recovery, I got my life back and have carried on virtually free of Crohns symptoms. A few years later, I met my and then married my wonderful wife - we met dancing - and now in my 70s, my life has never been better. In my case, the surgery has not interfered with intimacy - although I had feared it would. I'm so thankful for the modern medical advances and great health care heros that have given me a second chance. For those contemplating this major surgery, I'm here to remind you that miracles are possible.

[uselessoldman]

I am now 58 and had my Ileostomy/Colostomy ages 21 so 37 years ago and what it gave me was my life back what I lost was sweet eff all. That said the ulcerative colitis came back last year in the form of a blocked bile duct and pancreatic cancer was found so yet another massive operation (whipple). We are survivors and live to tell a tale, in the end only one thing matters, your still alive

[ninjamom]

I had a daughter in 2000. I was sick for many years prior to that but didn’t yet have a Crohn’s diagnosis. When my daughter was 2 1/2 I had a terrible flare and ended up hospitalized and had to have an open surgery bowel resection. We wanted to have a large family. I was never able to conceive again. We did try some fertility treatments short of IVF as we couldn’t afford that at the time. All efforts were unsuccessful. I know it is not the same as I was blessed with my one child, but I spent many years heartbroken that I could never conceive again. I feel for you and all the other ladies who experience this pain. I hope you will yet get to become the momma you want to be. Blessings. 💙

[dudebud]

I’m facing this as my spinal cord damage as a male. I was police, got hurt, had numerous spinal cord stimulator trials, (which caused tumors- rare), I’m a male have self cath 10xs a day and now this. I’m nearly divorced now and am totally isolated. You are amazing and glad I found your channel.

[garybean]

You are warrior. I applaud your courage, strength, and willingness to talk so openly. I am thankful for the wisdom you shared.

[marikotrue]

This was a very gentle yet informative way of explaining what a patient can expect from this type of surgery. Not that I regret any of my past experiences of being operated on (not for IBD), but I have never received as much clarity regarding any medical procedure as I have on this channel. Perhaps I did not ask the right questions or doctors just do not get courses on patient conversations.

[anitaford]

You are one remarkable woman!!! Your strength and courage is so powerful. Your knowledge and experience are helping so many and you bring peace to those who need guidance. ❤❤❤❤❤