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Hi Lili,

I am sorry to hear that you are faced with this decision. You have come to the right place for information and caring people.

At the age of 63, and after 20 years of active colitis, I started getting high grade dysplastic lesions in my rectum. At that point my GI told me that’s it; colectomy and jpouch.

you don’t state what type of dysplasia you have or it’s location. Depending on that and other factors, plus your care teams recommendation, you will be able to make a decision that is best for you.

I advise to read, read, and read some more. Don’t rush any decision and choose surgical options and surgeons wisely.

good luck and please return here as often as needed for follow up questions

eric

Thanks for your reply, Eric. I don’t know the type or location of the dysplasia. I’ll know more after my appointment on the 14th. I’ll be back here after I hear. In the meantime, it’s so reassuring to know this group is here. Thanks again! —Lili

My jpouch is about 23 yrs old, and I'm still doing ok. The road was rocky at first. Expect to take a long time to get yourself a 'new normal'. It took me about 2 yrs. So you've got to be patient with yourself. This site is a great place to be for advice, information, and maybe just to vent. Most people here are very helpful and understanding. Good luck with everything.

Thank you for your response. With a name like “Maverick“ it sounds like you’ve got this under control

@Lili R posted:

Thank you for your response. With a name like “Maverick“ it sounds like you’ve got this under control

😂🤣It sounds like it, but I do have times when it's only a mirage. 🥴

Hi Lili,

You nailed it - surgery and a j-pouch are better than cancer. But "better than cancer" is a low bar. I totally empathize. I was so freaked out when I was diagnosed with extensive polyposis and told I needed surgery right away to remove my large intestine that I just nope, not doing it. When my family doc learned from my GI doc that I was refusing the surgery, she called me in and said "Not on my watch, you are NOT walking towards cancer".

That was in early 2007. I am now 68 years old, have had the j-pouch (with one super effective rebuild) for almost16 years, and I'm fine. Honestly. It wasn't a picnic at first, I had some problems, but my roommate, my daughter and this forum were a huge help in helping me get through the "learning phase". My GI surgeon told me after the surgery that the body learns to adapt over time, and that it would get easier, and it has done just that.

Come back and post if you need or want support! Best of luck (and skill) to you,

Jane

Jane, thanks for responding. It feels good to know that others have gotten through this. Of course this is a huge bummer at any age (understatement of the year!), but somehow when you’re young (as you were) and still very active, it feels more dramatic and life-altering. I’ll sure I’ll be back here after I hear from the GI. —Lili

Lili, ask your surgeon if he has a list of patients who have gone through this surgery with him, and ask if you can speak with them privately. These former patients are known as peer supports. Just like everyone on this site.

The difference is the surgeon’s former patients have gone through the same surgery with him / her and possibly with the same medical team who will surround you during your surgery. You can ask the peer support person how they made it through, what the surgeon and his / her team were like (and I include their office staff because secretaries are the gateway to the boss), ask what they experienced during their hospital stay, pain management, the level of after-surgery care from the team, what they did when they got home, tips, advice, everything.

My surgeon has such a list and I was given three names to call and ask them anything. They were in different peer stages: one was a year past her surgery, another was five years past, and one was 20 years. So I got a good picture of what was coming. We didn’t share last names, just first names, and after my surgery I didn’t need to talk with them again, and I came to this site and found thousands of people. It was so helpful to me. I was the same as you are now, UC for 30 years, regular colonoscopies that showed mild inflammation, and then dysplasia, and a malignant tumour stage 1. That was six years ago. I saw my surgeon regularly for follow ups every six months for pouchoscopy and CT scan of my organs, then “graduated” to the senior class and now see him every two years for pouchoscopy and CT scan. I feel great. Now I am a peer support for other patients.

@Winterberry, this is great advice! It’s so heartening to hear stories like yours. Thank you for sharing.

DIAGNOSIS UPDATE: I had a consult at Mt Sinai Hospital in nyc. They felt it was too soon to talk about surgery. They increased my Lialda dose from the low maintenance dose i had been taking and suggested a chromocolonoscopy. I just got the results and while they found and removed two small polyps, there was no indication of dysplasia and no inflammation to speak of.  I'm cautiously optimistic that I may not need surgery quite yet. I see the doctor on February 8 to figure out next steps. I’ll post an update when I have it.

Thanks to you all!

Hey Lili,

glad to read you are taking your time with this.

the first time high grade dysplasia showed up in my rectum, the GI doctor freaked out and basically fired me and referred me out to an expert (my current) GI. New guy repeated the colonoscopy and the HGD was gone. We did not talk about colectomy again for 4 years until lesions stated appearing.

these things can take a long time to manifest, so caution and prudence are in order, which gives you additional time to evaluate your options along with active surveillance.

Great advice! I feel like I have been given a wake up call. I plan to take better care of myself and keep my stress levels down. At the same time my I’m prepared for the possible eventualities.

I think you are in good hands.

if they are performing techniques like chromo, etc they are on the cutting edge.

while we cannot predict the future, being with the right care team will help mitigate nasty surprises.

you will have plenty of time to worry about surgical decisions when the time comes.

In the meantime:

Dont worry, be happy!!