Proctocolectomy on 8/17/15 lots of questions!!!

Quick review of myself, diagnosed with pancolitis July 2007. off and on flares since then, been on all the typical mess, like 6mp, mesalamine, prednisone. Failed Humira initially after several months of great results going into a terrible flare in January. GI said a new med called entyvio was out and wanted me to try but didn't qualify as I needed to try remicade first (long story I get treatments from the VA). Just like Humira remicade was working for a few months with the help of prednisone, ultimately ended up with the the double dose and again a massive flare. So now I "qualified" to try entyvio. Mulled it over for a few and decided to go with the surgery for various reasons.

Now I have some questions for the vets of surgery out there! First thing first is I'm a police officer and was really hoping someone on this sight would be able to relate to that profession and give me some insight on returning to work ( can't imagine it's that hard compared to a UC flare!).
I opted for the ileostomy, just think having a bag will be a way easier transition for me and learning to live with it as opposed to a multi structured 3 tier surgery to make a pouch that I need to learn how to use that can also have lots of complications. I don't have that kind of time due to work and being head of household.
For the surgery itself and my early days at home, whats the discomfort level, I learned on this sight that them sewing my backside will hurt the most? I had no idea about that hurting I thought the stomach would be the issue. Any tips to alleviate pain and get comfortable with a sewn up backside? And how long can I expect to be in total discomfor upon returning home?
Also a big concern for me is diet, I feel like since UC interrupted my life and eating almost anything is the enemy, and I'm hoping someone on here has some good foods to help heal and are easy to eat during the early stages of recovery.
I want to hear what u think about gas, seems to be an issue with a bag and wanted to know if u guys take any gas relief things, or just avoid gassy foods. Or if gas is just going to be a big part of wearing a bag. I'd have to say I'm quite gassy while in a UC flare and that's the most uncomfortable part. It makes things very painful during a flare. Also, as time goes on do you notice that gas starts to settle or is it mostly food related?
Last topic for now I want to touch on is stoma guards. I'll be wearing a normal police uniform and from what I've found is there are not a lot of guards out there. I've found stomaplex? Does anyone wear one of these, do you like it? Do you know of any other stoma guards that I shoukd look into?
Sorry for the long post, any info you have about your expieriences would definitely be very helpful, I look forward to them!

The rear is the worst part. Mine was really sore for about 4 weeks, is only slightly sore now. (had my surgery on 6/26/15) Getting comfortable takes some work. For me i always had a pillow or cushion to site on. I was fine in bed, on the couch or laying down anywhere. Never use one of those inflatable rings to sit on. It will pull the stitches apart. It will drain while healing. I just dabbed it from time to time. Hot showers always helped me a lot. I took a few everyday and let the hot water run over the area. I was told it helps the healing process, as well.

For food, avoid high fiber foods. I kept it light for the first few weeks. Just graze, I didn't eat meals. I would just snack throughout the day several times. Make sure to chew the food well. Keep hydrated. I eventually eased back into meals and slowly added other foods back into my diet. It's different for everyone. Some foods are fine, some may not be. It's trial and error with food.

It takes time to get used to it. For me it was more mental and emotional. It gets better, so I hear. I'm only less than 2 months out, so I'm still dealing with it. Good luck to you.

I had a total colectomy, so I still have my full rectum, even though my ileostomy is permanent (surgeon didn't want to do pelvic surgery on me). So I can't comment on the backside being sown up aspect of the surgery. I don't really have problems with my rectum - I pass mucous from it every now & again, there's no consistency with it though, just get the urge every so often. Sometimes I've been a little crampy in that area but it's never lasted long, or impacted me in any way. So that could be another option for you to bring up with your surgeon.

With food, for the first 6 weeks or so you're recommended to eat a low residue diet, and eat little & often as previously mentioned. I had no appetite at all for the first few weeks, I just made myself eat every few hours. Things like crackers & cheese, toast & soup, yogurts, chicken, eggs, etc. You gradually add different foods back in, and learn what works for you. Everyone is different in that sense. What took me personally a long time was eating large portions. I had to eat small amounts for probably close to 5-6 months. It wasn't really an issue, unless I wanted to eat out somewhere. I had to make sure to not finish the meal! But now I can eat as much as I want.

With gas, I found that for the first couple of months I had loads of gas but then it settled down too. My bag would be like a balloon! Now I seem to get some if I don't eat regularly, but nothing like at the beginning. I also seem to get most during the night also, quite often I wake up & my bag is half-filled with air and half output. When there is air in my bag though, I just let it out the bottom in the toilet as I'm emptying (I use a one-piece bag), it's not much of an issue for me.

I don't have or use a stoma guard, but I was shown one by a Convatec nurse that looked pretty good. I'm sure there's a few different ones on the market.

Good luck!

I had a protocolectomy in June. I was very lucky to have an extremely experienced and skilled surgeon who is also a professor at our local university hospital. She performed the entire procedure lapriscopically, with the exception of a 5 inch incision at my bikini line. My surgeon does not believe in leaving a rectal stump because of the high incident of reoccurring UC in the area. I did have about 3 weeks of significant gas but walking will do a lot to relieve this issue. Walk, walk and walk some more. My appetite 8 weeks post surgery is not huge but starting to increase. Body is just taking its time to heal. And, I have luckily had very little rectal discomfort; partially attributable to the skill set of the surgeon. I am back to most of my daily activities and have started body work (pully weights and yoga) in earnest.

As for rectal discomfort, there are a couple of wound cushions online that are very helpful. They are pre inflated and relieve pressure on the rectal site; easily portable and should be used while sitting or driving.

Notsosicklygirl, I did consider the j pouch as I've met with the surgeons several times over the past couple of years. At first I thought there would be no other option. First time I met with a surgeon I was 26 and fresh out of the military, the thought of a bag was mortifying! But this last time I had a flare and the years of random google searching I just decided the bag would be a good route for me. A lot of it does have to do with work, I feel like I really don't have the time to get so many operations. And I feel like Murphy himself follows me around so I felt like if I got the pouch I'd certainly be in the small percentage of people that end up with chronic problems. Mostly just boiled down to time off of work and uncertainties about the procedure working for me. I really hope the pouch works for you and everyone else who desires one. I know it's my first choice but too many cons for me to consider. With my profession it seemed like the best choice as I'm not giving up being a police officer over something as simple as a stoma!
I did get onto the website and order a waffle cushion and I went to a furniture store and got myself a recliner for something to serve as a post hospital bed!
At this point I'm just a little anxious for the surgery and hope everything goes well. I'll keep the site posted when I get home and try and do a short daily log of obstacles and accomplishments. 4 more days til surgery, will be nice to be UC free!

Hi Seanie, welcome to the forum!
I have private health insurance, and have done my whole life (so pre-UC), so that would make the healthcare easier for me as I went private for most things - though it did make it expensive to see my consultant!
I had my surgery in St Vincent's Hospital in Dublin, and I can't fault them. I was initially with a different consultant for most of the time I was sick, and I can't fault him either, but when I had gone through all of the treatments & had no other option, he referred me to the IBD clinic in Vincent's. They have a huge clinic there, and to be honest I wished I had been there from the start - even though my initial consultant was great also. But they work in a very multi-disciplinary way which I liked. My surgery ended up being pretty much emergency surgery - once I was referred to the clinic, my consultant there said that would take me in for a sigmoidoscopy the next week & I could speak to the surgeon then, but when I went in for the scope, I was admitted as I was too ill & had surgery a day later.
My insurance covered remicade, so I didn't have to pay anything there - the receipts I received showed that it was very expensive! But I never had any issue receiving it.

Having a stoma, initially it's very overwhelming. But it does become normal funnily enough! Especially when you aren't sick any more and can do so many things that you couldn't do! I began to realise how much I put up with, and that's where it became overwhelming. I still am having issues mentally & emotionally, not with my stoma exactly, but just with the whole experience. But I've been on 3 holidays, swimming, rollarcoasters, ziplining, clubbing with friends, I can eat most of what I try and am adding things to my "can-eat" list all of the time.

Regarding having kids, my surgeon told me that he wouldn't like to do pelvic surgery on me because of the risk of infertility that has. I am at a bit more of a risk for that, as I had an ovary removed when I was 19, so it may be harder for me to conceive anyway. But he did say that he didn't like doing pelvic surgeries on females of my age, and at my stage of life (without kids, and potentially wanting them in the future). He said having a stoma causes no issues with pregnany, once your medical team know obviously! So I still have my rectum, he didn't remove it, but it doesn't cause issues. I sometimes get the urge to go & pass mucous but that's it!

I hope I've been some help! If you've any more questions, just ask! :)

Well thanks for all the input everyone!
I've been doing research and did find quite a few stoma guards and I'll I'm fortunate enough that the va hospital is going to foot the bill on them for me which is pretty nice! Those things look pretty expensive so I'll take what I can get.
I'm a full week out from surgery now and doing pretty good. Changed a bag by myself for the first time this morning. Using a coloplast sensura mio 1 piece. So far so good. Not using any barriers or anything just slapped it on after a shower without any bag on, dried it with a hair drier and it seems to be working well. Time will tell I suppose, this is a free sample they sent me while I was in the hospital still.
Not too hard to adjust so far with the bag, just adjusting to being in pain still but that will pass, and once it does I think this thing will be great!