I am so sick of this I am going to begin researching surgery

Yeah, it seems like most people are out for around two or three weeks. I'm sure with the laparoscopic surgery it would really help with the recovery time. I'm lucky in that my job is not only one where I sit at a desk all day, but it's also at a hospital so if I went back and anything were to happen, I'd be in the perfect place for it! Haha.

From what I've read, the two step procedure is the most commonly performed... I think it's mostly because if you go one step you have a higher risk of infection from the fecal matter and what not going right through your new wounds, you know?

ComedyDork... I Know what you mean!! After I posted my comment I had gone and read more deeply into the posts and found a lot of IVF posts which was NOT very comforting... Especially since my insurance company does not cover infertility treatment of ANY kind. Yuck. It was nice to see so many women pregnant and having normal successful pregnancies is what I meant, but the fact that so many on there have had to take extra steps to get pregnant was a little disconcerting. But I've read a lot that says most women don't have any problems, so hopefully they're the exception and not the rule :(

If the 2-step is the most commonly performed it's not because of fecal matter infecting the new plumbing (that's a non-issue since patients don't receive any food for several days post surgery) it's because the patient is too sick to have a 1-step. And lets face it, most people don't elect to have this surgery when they are feeling good, they wait until they are so ill that it becomes medically necessary!

Sue

suebear- that's interesting! I never really thought of it that way... I always thought 2-step was standard to let the pouch heal. That's nice to know, one would think having it in one step would reduce scar tissue, thus maybe reducing the infertility risk?

ComedyDork, you're right- that article IS scary!! I've never heard of it being 48% though, that seems awfully high. I mean, you think they would mention that more or maybe even try to talk young women out of having the procedure if the risk was really that high.

Someone in the j-pouch group was talking about a special film or something that their doctor put over thier tubes to help protect against the risk of infertility and scar tissue. That seems interesting. Also, I wonder if laparoscopic surgery reduces the risk any??? Most surgeries were done open up until a few years ago I guess so maybe the previous/current numbers are based largely on patients who have had open surgery.

I don't know, I guess I'm just trying to rationalize it all and tell myself that there's not that big of a risk, but it is really worrisome :-/

ComedyDork,

I started a thread on j-pouch.org about fertility and have had a few good responses, and hopefully will get more. I thought I'd post the link to it here so you could read it if you wanted.

http://j-pouch.org/eve/forums/a/tpc/f/3451071921/m/7001074682

That's what I'm wondering. Some have posted surgery scar pictures and they have HUGE scars from open surgery, so there's no wonder they have a lot of scar tissue and adhesions!! It makes sense that laparoscopically would cut down on the scar tissue but maybe I'm wrong. I don't understand the whole adhesion business either or why that happens.

Hmm, so I haven't found much info on laparoscopic surgery and fertility (I googled "laparoscopic + colectomy + fertility).

This one talks about IRA being better for keeping up fertility rates instead of IPAA (which is j-pouch, right?). But what exactly is IRA?

http://www.ncbi.nlm.nih.gov/pubmed/16733384

The rest of the articles that came up on my search were related to "regular" colectomies.

 

I am scheduled for surgery next week. I determined that the permanent ileostomy made most sense for me since the prospect of life with a bag seemed acceptable and was concerned about the the # of surgeries and length of time needed to adapt to the pouch (assuming normal recovery times). I also heard from my 2 GI's that if it were them (mid-50's males) they would opt for the permanent ileo.

My surgeon suggested the best of both worlds for me: He will perform laprascopically a proctocolectomy but keep my anus and sphincter muscles intact. While there is some remaining risk of cancer, it is statistically far less than the general population of non-uc'ers. Apparently the risk is 1 in 10,000 vs. 1 in 25 in the general population. This way I keep the option for a future j-pouch (2 more surgeries) and I am told that I am much less likely to find sitting for long periods in any way uncomfortable.

I am petrified about surgery-especially the idea that I will cede complete control but after 7 months of every med available and still up to 40 bm's daily, I know this is the right step for me.

Mike

Best of luck to you. 40bm a day would push me in that direction, regardless of my previous posts.

ComedyDork,
Most definitely! My insurance doesn't kick in until July 1st and I have an appointment with a new GI scheduled on July 18th (it was the soonest I could get in that month) so now I'm just pretty much waiting until I can talk to him and get a referral to the surgeon I've picked out to meet with first... I don't plan on scheduling surgery in July or anything but I want to at least talk to a surgeon about everything. I'm mainly worried that the GI will be against it and not give me a referral.. I hope that won't be the case. I mean, I should be allowed to go talk to a surgeon if I want!
I'm thinking, if I do decide to go through with it I'd probably wait until sometime next year that way I have been with my job for a year and can take a few weeks off without having any problems (and have enough PTO saved up to pay for it), and so I could qualify for FMLA/medical leave.

How about you?

Comedydork, just a suggestion:  You should start looking for insurance before you leave your father's insurance plan.  If nothing else go for a catastrophic plan with a high deductible.

Ah man, they're doing an ileo redo bowel case at my work right now and one of the techs asked if I wanted to come in and watch... I got excited but then when I got close to the room I almost threw up... 1) there was no prep done as it was an emergency and 2) they use hot tools to cut the skin so all you can smell is an overwhelming stench of burning flesh and feces and I couldn't even breathe through my nose without feeling nauseous, so I was like "Yeah maybe later" haha. It was the most indescribably disgusting smell in the world. Worse than dead roadkill.

I did get to see a piece of the bowel up close, but it was dead bowel so it was a little black and rotted. It was so weird though.

Just thought I would share... hahah

Edie, thanks for the visual...NOT! I'll try to keep that out of my mind while we move closer and closer to bratcat's surgery.

ComedyDork, it might not be the best option but can you stay on your dad's insurance if you stay a full time student? Ours lets our kids stay on until 23 if they are full time. Since our son was just diagnosed with Crohns and graduates in January with his associates degree, he is looking for a job with group health benefits. Otherwise, he will be going for another degree!   He went to school to be an auto mechanic, loves the shop he is at, but (1) they really don't need him full time, (2) the pay stinks, and (3) no insurance.  So he just got employed by the school district as a substitute custodian. He is hoping it will lead to a full-time permanant position. (Hey his dad is a custodian in another school district for almost 30 years...great benefits and pretty good pay.)  In his first week at the schools, he is programming and setting up computers throughout the district. And so far, he likes it. But come the end of August, it is back to school full time unless he is hired permanantly.