Does your bumbumhole hurt a long time afterward? And other questions

Hi all, new to the site, first post. I have severe aggressive crohns all throughout along with anal fistulas and perianal disease. My Dr wants me to try the reversal - no pressure from her, I really like her- but I have been thinking about making my ileostomy permanent and getting a total proctocoloectomy as well as hysterectomy due to uterine prolapse, fibroids and adenomyosis. 

There's a lot going on in my head and I need help because the thoughts and fear of it- it's becoming all consuming.

**I know everyone is different and all that. I just have NO ONE to talk to about this nor do I know anyone with this much illness in their life. 

My reasons are:

   Pain from re-establishing use of colon,     Anus and rectal area- ya know, all that.

    More fistulas and all THAT fun

    More surgeries that are guaranteed 

    Trauma and mental strain that having.      consistent pain causes - like when.             starting to use that area again. 

    The downtime from the surgeries.               themselves 

Has anyone had anything similar? 

 

 

Good morning, welcome to the community. Your story is  common with most of the members here. I just quickly read your profile. It sounds very similar to mine. I'm glad you're here and I'm gonna comment a little bit later. I'm on the road right now. But I just wanted to say you're in the right place. Just be patient.  Others like yourself will be chiming  in so don't worry.I'll get right back to you as soon as I can hang in there.

I’m sorry you’re going through all you are, I really can’t talk, hon Crohn or things like that so I won’t, I had cancer the rectum which resulted in having my rectum totally removed and having a permanent class to me my cancer came back again and now I’ve had half my vagina removed and the tumor removed and the back wall of my pelvic area scrapes so hopefully I’m a cancer is gone and I’m sorry if that TMI. Find that there’s a group of people here that will provide their knowledge of what they’ve gone through how they’ve handled it. What was good about it bad about it they’re all amazing. I had a hysterectomy when I was 47 before all my colostomy issues and I haven’t had too much pain except from surgeries like now I’m going through PT and occupational therapy nurse visit but yeah, I do have some Barbie but because they removed my my anal and yes, I occasionally have pain there not every minute sometimes randomly sometimes I have the urge to go poo but I have a Barbie butt so I can’t go to And then my bag feels up so the ghost feelings are still there but like I said, there’s a group of people here and they’ll help you out. They help me immensely. Have a good day Linda. 

Hi, not sure where you’re at in MD- what hospitals you’re close to… I hear that you like your surgeon, but it’s never a bad idea to get a 2nd opinion. I have an amazing colorectal surgeon who also specializes in female pelvic floor issues (for her a hysterectomy is a last resort surgical option). She’s at Cleveland Clinic but she does do virtual consults. If you’re interested in her info let me know. 

Good afternoon, . I wanted to touch bass with you. Because I reviewed your profile again and you stated. You had severe  aggressive chrones. I don't like the sound of that and it's nice that your physician recommends reversal. No pressure...But if you have aggressive chrones, I would think real hard about reversal.. because if you have a suppressed immunity system  such as I have had... it's likely you will encounter a few problems with or without you're colon...  So that 's something to think about. I suffered 

 37 years yeah, it was no picnic on all these medications. And just this past October, I had a Ken butt and that opened up a variety of new symptoms.  So you have to understand that there will be complications and again. ..... No 2 people are the same. I think I am the odd ball. I've been put through the Ringer. But that's why I'm a Warrior I dance..I sing..ha ha..

.Surgery  and reversals and current health and age are something you have to think real hard about...it's  your future...plus ..u are still young and that helps recovery quickly.

Some of us suffer-  begin at age 25..we are seniors now.

Some of us have IBD..CANCER..FISTUALAS..2 BAGS..BLADDER CANCER..ETC.some of us it's life threatening in dire need of surgery. We maybe on different ships but share same ocean...

the people here will help you and in regards to your question about having pain "afterwards"??  Are you saying after the  reversal or a kenn butt?? you have to be specific..

Pain from your butt hole is never good.

Thank you so much!♡♡ 

Thanks everyone for the good info and kind words♡♡♡ 

The pain I am referring to is the rectal pain from using the Anus and rectum for the first few weeks after reconnecting surgery. 

And also if there is pain associated with the proctocoloectomy or os ot more of a void feeling like something is missing 

I've had crohns for 34 years now- dx at 11 took a long time to get dx because the 90s. I started with Perianal disease at 17 and had 2 fistulotomies before 19. I've always been a warrior and the past 3 years with this ostomy- to say it's the most challenging time in my life is the understatement of the century lol

I'm so grateful for the responses and any info anyone has and is willing to share♡♡♡ 

Ahhh..good follow up..

You had me  at " warrior".😉

Having a kenn butt, procto...I can assure you- for me- that there is no phantoms, urges.. or pains down there.  I am still in early stages of recovering and the sad part has been leaks from being sown up down there. 2 attempts done to fix it. 

So there is that possibility..rare..but happens.

Remember,  surgery does not cure you of IBD. My opinion is an inflammatory issue is always present and traveling..Again, IMHO. 

The other members whose poop shooter works will reply regarding pain issues.

 

Hugs Warror, you give others strength, and still do a happy dance, thank you for beingYOU!

Hi Skeezal welcome to the site, have you consulted with a gastroenterologist and not just the surgeon, i would think a gastro might agree with you on a ilieostomy especially if no relief with meds.

Welcome to the site, Skeezal. I've only had my ileostomy for about 15 months. For a number of reasons, not the least of which is my age (76), I have decided my ileostomy is permanent. I also do not have any colon left. All I can say is, if I had your history, I would opt for the permanent ileostomy. However, I am not 42. That must make the decision even more difficult. However, I agree with Ron. Talk to a gastro person and see what they say.

Daniel