It’s amazing how I can get myself so nervous about things. I mean, a meeting to just talk and get answers to all of my questions is nothing to be nervous about, yet I was soo nervous that even my rectum hurt! Haha now that wasn’t fun, bloody good job it didn’t stay that way for long, but the nervs stayed. For weeks and weeks now I have heard so many different stories and theories about what paths can be taken when having an ileostomy, what the future may hold, the dangers and complications. I have laid awake so much having some sort of question-theory-‘what if’ war. Finally my questions have been answered and I now have a load of other things to think of.
As I have had a total colectomy done I therefore have no colon anymore, instead I have a ileostomy stoma and the rectal stump left, as the image shows here.
The thought of only having about 2 years to decide if I was gonna keep my stoma for life or try a re connection surgery was eating at me. As well as the removal of the rectum, cancer risks, infertility, and all the stress around that. So I met up with the most fabulous surgeon yesterday, the same one I met before my last surgery. He is an older man, with plenty of experience and knowledge. He is a real person, talks calm, and in a language that is understandable to me. He is honest about pros and cons. Best of all, he has calmed my nervs. I was thinking I’d have to rush to have children within 2 years, and then have to have another surgery too and I felt like I was loosing my life, loosing control.
Well apparently none of this is the case. According to him at least.
Option one: IRA
I apparently have around up to 3-4 years to decide (depending on the state of my rectum) if I want to re connect and get an IRA (ileorectal anastomosis) which basically is where they take the small intestine and connect it to the rectum. This has a chance of between 30-70% of being successful (might as well say 50%). In a positive mind I’d be one of those who has a great experience and it all works good with. If this doesn’t work and leads to complications he said I can always go back to an ileostomy and I wouldn’t have to remove the rectum, as he said that the inflammation would calm down once the bowl movements stopped flowing through it. He said he recommends trying this surgery to everyone, especially someone younger like myself (unless dead set on keeping the stoma that is). This surgery should only take about 3 hours and apparently recovery shouldn’t be too long. This option also doesn’t affect fertility or chances of getting pregnant or carrying a baby. I also asked if life with a stoma can be reflected at all in the IRA, as I can currently eat everything without any real problems and he said that in theory it should be the same just that it would come out of a different exit.
Option two: J-Pouch/IPAA
The other option is a j-pouch (IPAA = ileal pouch–anal anastomosis). This surgery is more complex as they remove the rectum and build a pouch, which is to act like the rectum, out of the small intestine. I could wait up to 10 years or more before deciding to have this surgery, he also recommended to try IRA before this because once you have done this, the rectum is gone. This option is also recommended more once you are done having children as the chance of getting pregnant lowers to 30%, so he said it’s usually recommended to people done with kids, unless it’s necessary. This surgery can cause other complications as well though as it is a more difficult and complex surgery located in the pelvis, for example with the nervs around the urinary tract as well as the vagina. I’m not going to go into too much detail right now thought. He also told me that after 20 years 70% of patients are over the moon with their surgery and live normal, even forgetting they have had surgery, 10% have had to get a stoma again due to complications and the rest of the 20% aren’t completely happy as they might have some problems but not enough to revert back to a stoma.
On an average the amount of toilet trips with an IRA can be around 4-6 (but can of course be 2 or 10) and with a J-pouch can be around 5-7 (but of course can again be 2 or 10). This varies greatly depending on how much it is pressing, how often you want to go and is about the same amount as you empty the bag, or fill it up.
Option three: Keeping the stoma
Of course the third option would be to just keep the stoma. If the stoma is kept with the rectum still there then there would be yearly (or every other year) visits and check ups to make sure there isn’t any cancer signs or other problems. This is the case with both IRA and leaving the rectum and stoma. The risk of rectum cancer is increased after ulcerous colitis, however on a more positive note, I can’t get colon cancer!
One thing that scares me is the thought of removing the rectum. Because of the way the body is ‘built’ the rectum holds the uterus in place, and of course, when the rectum is removed the uterus falls back. There is nothing dangerous about this, apart from the fact that it may need cleaning more as bacteria can get stuck and maybe won’t flow out normally, or that the discharge that normally comes out a little bit at a time, keeping things clean and under control, may all come out in one blob when for example standing up. It may also change the sex life and feelings down there. However a J-pouch can do that too if the nervs are damaged. Even now I have been noticing a difference, being sore in some positions, and of course I asked the surgeon about this and he assured me that as everything heals and the scars become softer, this discomfort should hopefully ease too. I must say I have already started to notice a difference in not being as sore, so yay that looks positive at least.
There seem to be so many pros and cons with all options and I am currently in a confused state – again – however this time it feels a bit more concrete. I do not have to rush children, I do not have to rush another surgery. I actually have some time to think about things and gather information from people who have been through these surgeries (as this is only really the information from the surgeon). Of course the surgeons will want to cover their backs by talking about the negative things that can happen (which of course can be many), as well as mentioning the good things (which also can be many), and no matter how many people I ask, however many different stories I hear, I will never be sure on how things pan out for me until I am in that position having had whatever I decide on done. Of course I have heard stories where people have been through hell with their IRA and had to remove their rectum, as well as people who have been able to get pregnant after their j-pouch, but nothing is ever really certain and everyone experiences everything so differently and has so many different reactions, sometimes knowing more than the surgeons do too. But it feels good having spoken to him and got these answers. So now I can let these thoughts sink in, slow my body clock down a bit, as well as the stress syrens going off in my head. The next step is getting my appointment for the autumn to check my rectum out to see what state it is in, and after that I will have a better idea of what may lie ahead of me.