Surgery virgin

Welcome to the Ostomies page! I just recently went through the entire surgery process. First, which surgery are you going for? J Pouch, Permanent Illeostomy? I had a bowel resection in 2013 at the Cleveland Clinic in Weston, Florida. My J Pouch surgery was at Boca Regional. Regardless of what surgery, it's natural for your nerves to be on edge, it's a big decision. I know I couldn't sleep the night before. The nurses do a great job making you feel comfortable. You'll usually check in, they'll get you into a bed, get some fluids going and check your vitals. You'll have a visit from the anesthesiologist who will ask you various questions. He may ask you if you want something to relax you prior to going into the operating room, it's generally a drug called Versed given in your IV. I get it all the time, it actually had me smiling being wheeled into the operating room lol. Your surgeon will also come to visit you as well and give you some general info. You'll be wheeled into the operating room and surrounded by quite a few people and equipment. They'll put oxygen over your face and talk to you and tell you to take deep breaths. They will knock you out fairly fast and the general anesthesia will burn going in but you won't be awake for a few seconds after. You won't remember a thing, you'll wake up in recovery and will be there till they move you out. You'll probably have a pain button to administer pain meds yourself every 10 minutes and they may give you more through your IV. After surgery it's important to get up and WALK when they tell you. It does two important things, gets your bowels moving again and also will greatly help with any pain you feel. You won't feel like walking but I promise you it will greatly help and you want to get your bowels awake as soon as you can.

Hi sc2016....welcome.

Sorry you have to be posting here at all but it's a great support site. :)

Have you had your surgery consult already? I had j pouch surgery 6 years ago. Not at the Cleavland clinic but I have heard such great things about that facility and the doctors/surgeons there. You will be in excellent hands.

I had a two step laparoscopic procedure. Step 1 was the proctocolectomy and j pouch creation with the temporary loop ileosotmy. Step 2 was the ileostomy reversal (takedown).

After step one I was in the hospital for 10 days. I had to return to the hospital a week after I got home because of an abscess/infection that developed and it needed to be drained. So that was a complication I wasn't expecting to have to deal with. Mentally prepare yourself for those "just in cases". They can happen. It wasn't a major thing and it was dealt with in a timely manner but I remember being really, really upset about it at the time. Don't be surprised if you feel a little depressed afterwards. Surgery is just as hard mentally as it is physically. Emotions can get pretty wacked out.

I had a really hard time with my ileosotmy. I won't go too much into that but I think mainly because my stoma was recessed I had a lot of skin issues. Burning and itching. It was really bad some days. Let's just say I was counting the days until my takedown.

For step 2 I was in the hospital for 4 days. That surgery was so much easier for me than the first one. I was very fortunate to recover very quickly. After 2 weeks it was back to life as usual. Start to finish this all took me a little over 4 months.

As far as my scars go...they are minimal since I had a lapo procedure. They did make a c section type incision right above my pubic bone. Mine would have been great but it kept opening up and I had to pack it for a while. So my scar is kind of wide since it didn't heal in a nice, thin line that it should have been. The good thing is that it's below the bikini line. The scar where my stoma was is barely visible now. My surgeon did a nice job closing it up.

I'm very happy with my results. My j pouch has been very good to me. I'm extremely grateful for the procedure.

Jpouch.org is a good support site as well. Many people on that forum have had their procedures at the CC. Best of luck and feel free to ask any questions that pop into mind. :)

Hi SC - I had two step robot assisted lapro jpouch surgery at the Mayo clinic. My second step or takedown was 6 months ago and my life has dramatically improved from my UC days. Unlike ByeByeUC, I do not have a c section type scar. I have a 1.5 inch scar (former stoma site) and tiny lapro scars (the length of my pinky nail) underneath my right ribcage, inside my belly button and on my left side halfway between my rib cage and my hip. My scars are really no big deal. I am loving life not having to worry about UC, taking a bunch of meds, scheduling colonoscopies, etc. I blogged about my experience from start to finish to help people facing the surgery. Feel free to take a look - http://fyouuc.blogspot.com/

Best of luck!

I am so happy to have joined this forum- it's so nice to not feel like I'm alone in all of this. Especially after spending the last four years trying to hide or downplay my disease and what was going on.

ByeByeUC- I had my surgery consult at the CC four days ago, and he seemed ready to proceed as soon as possible. I had read some reviews on him before I went in, and heard a lot of people that didn't have good experiences with him because he was "too blunt" or "not sympathetic". But honestly, I appreciated how honest he was with me about what I'm getting myself into. He explained the vast amount of complications that can arise, and definitely didn't sugarcoat what this recovery is going to be like. On another note, I am worried about those complications that might arise- I'm getting surgery 3 hours away from where I live. However, I am very glad to hear that you are happy with your jpouch.

blksteeda- The surgeon I met with said he does it in either 2 or 3 steps. He said he will make the decision during the first surgery, once he gets in and sees how severe the damage is to my colon. I'll be getting open surgery, he decided against laparoscopic (something about my size- I'm not entirely sure).

atwoodt- I am glad to hear that you had a good experience and are happy with the outcome of your surgery. I am really looking forward to getting my life back. Also, I am going to check out your blog- thanks so much for sharing!

SolomonSeal- I do have the option of a permanent ostomy, but I definitely don't want to be stuck with the bag forever. Why are you unhappy with your jpouch? You're only my age and I couldn't imagine opting for a permanent ostomy.

blksteeda said...
always remember if you have issues with your J Pouch you can always get a permanent ostomy.

This is so misleading, although so commonly said. I'm actually facing this reality right now. As a dude, I have a 25% risk of irreversible urinary or sexual incapacity if I opt for jpouch removal. Yeah, I can go back. There's just a 1 in 4 chance I will wake up with a urostomy (stoma for urine) or never be able to have sex.

For women there will be even further fertility issues and the same bladder risk. There are also way more adhesions, you also lose about 50cm of bowel.

You can go back to a stoma if a jpouch fails BUT IT'S A MASSIVE SURGERY WITH RISKS. I think that I would like to go back to a stoma given my quality of life over 1 year out, but I don't know if I can responsibly make that decision.

It was hearing horribly misleading things just like this that have put me in this awful situation, and I want people to know that going back from a jpouch to a permanent ostomy is a BIG BIG DEAL. Not casual.

SC2016
I am unhappy because from day one I have had issues like pain, bloating, incontinence, waking up at night. I go as much or more than I did when I had UC. My quality of life is much better than UC, but my life is still highly controlled by the bathroom. This wasn't what I was told, and things were a good bit better with a stoma. I seem to have chronic pouchitis, much like UC.

The only reason the jpouch was invented was because people didn't want stomas. Stomas can't get pouchitis, cuffitis, don't increase your risk of Crohn's, don't involve anastamoses (cutting your intestines apart and sewing back together), involve less dissection, don't have incontinence, don't take away any of your small bowel (OK, they can use up to 4-5cm... instead of 40-60cm for jpouch). Jpouch docs will say themselves the complication rate is lower for stomas.

Yes, I am your age. Probably not more than a year older. I don't know whether you too have Dr. Wexner, but those were his words too "a stoma at your young age." What's WAY WORSE at my age is all my classmates and colleague seeing me hurt and going to the bathroom over and over again and pitying me. I feel self conscious about that.

I'm a guy, so it may be different for me. That said, you're self conscious about scars? Scars don't hurt. There is nothing sexier to me than a woman who loves her own body. If your (potential) boyfriend can't accept you as an ostomate... forget about him. I felt much better about my body when it didn't hurt, when I would work out and was optimistic about my future health. I had much higher testosterone and a sex drive. My GF loves me, with all of my scars and when I had my stoma too. She misses my stoma self, because I was happier and not suffering. We used to draw on my ostomy bags. I would look at the messages she drew me for the week on my bag and smile. If you want, message me and I can even send you a photo.

Stoma=body image issues that require you to accept yourself and find QUALITY, NON-SUPERFICIAL people who will accept you for who you are NOT HOW YOU LOOK.

Jpouch= risk of MEDICAL issues and similar symptoms to UC.

I'm 22, going on 23, and too young to be explaining to people why I didn't sleep last night or why I am not sure what I'm doing with my life due to medical issues. Jpouch has basically taken 1.5 extra years of my life being sick for no darn reason. I do not give a **** what a stranger or even a pretty girl I might otherwise hook up with thinks about my stoma. I had this surgery to END my UC and the accompanying symptoms.

In the end, if you have jpouch surgery, supposedly your chances are good for a nice outcome. Ask yourself whether the benefit really justifies the risks.

Are you going to consult with other surgeons? I wouldn't have been open to having open surgery particularly. I realized it was a possible risk going into surgery, but I was thrilled when I woke up with the smaller incisions. I know scars aren't the end of the world, but i want to minimize them as much as possible since i don't have the most stellar healing from scars (compared to other people i know). We have a few people who have gone to CC for surgery. You can always ask for referrals here. I had 3 steps, but I find that it's rare, most surgeons do it in 2 steps. I had a pretty easy time with each step, no returning to the hospital between steps. Everything went according to plan.

I also heard that "you can always go back to the perm ileo" too and I agree with Solomon to some extent. it's not that easy. I don't care about fertility aspect, but I do care about losing more intestines. If i were a guy, I'd be extremely worried about some of the potential issues. On top of that, the less intestines you have, the faster the transit, more frequent emptying. Best case, is you get a j-pouch and you'e happy or you get an perm ileo and you're happy. Going back, is not easy.

The cool thing about the 3 step is you get to try out the permanent ileo. I have one friend who had it and liked it so much she decided to stay with it. On the other hand, I liked mine just fine, but I was ready to move on to get my jpouch. I didn't really desire to stay with a perm ileo, even though I knew it was less at risk for future problems. It sounded to me like you had no interest in going that route either... If you do have any interest at all, three steps could be a good option.

I wouldn't let a few bad jpouch stories scare you into thinking the worst. If I did that, I'd still be running to the toilet repeatedly and on all sorts of medications. Like Byebye said, do your research, consult a few surgeons and know you're in the best hands at a place like CC.

While people can sing the praises of the stoma and ileo, I could tell you about some of the challenges. It's not all rainbows and sunshine. In fact, I had to change my wardrobe quite a bit to accommodate. People say that improves over time, but I didn't have it long enough to say whether that's the case.

In regards to the issues with ostomy:
Skin wise, almost anything can be solved by just changing the hardware. I remember my first 3-4 weeks with my ileo being abysmal until I finally figured out what worked well for me. When I did, I did not have to hcnage mt bag for over a week, and my skin was quite healthy! Dudes can have body hair issues (OUCH) but that wouldn't be a problem for the women here.

If you do happen to be allergic to many ostomy products (most people aren't allergic to any), ostomy life could indeed be very hard; however, it's quite easy to get a skin test to check whether this is the case or not. Ask your nurse.

Carrying supplies is a nonsense issue to me. I guess that some people are doing so well that they don't need a bidet, soft towel, and calmoseptine, but if I leave my home for more than 24 hours, I will be risking severe butt irritation without those items. I also have to take a nice variety of drugs with me at all times. I also take a change of clothes sometimes, although thank goodness I've only needed to use that rarely. I'm carrying supplies, either way. Ostomy supplies actually fit better into a little baggy than everything else for me. :)

I realize that I would be reliant on the appliance. However, in developed countries, you really should have affordable access to them (I know some people get screwed over in the US though, sadly). If there is a zombie apocalypse, anyone with IBD will be done for anyways, I reason.

NSSG, with all respect, I had to make adjustments in my wardrobe too. Is that a body image issue or a medical issue?

I personally don't carry any supplies with my j-pouch. With my ileo, I would carry a one piece bag and some wipes. It wasn't a huge concern and I never had to use it, but I hated having to carry it. I don't carry a purse so carrying this stuff was never easy.

I guess it's partly insecurity on my part that I didn't want to show off my bag, but at the same time, people who have surgery to treat other medical conditions reconstruct to restore themselves to their pre-surgery condition. For example, breast cancer patients, they tend to get breast implants to restore their breasts... I don't want to have my life revolve around an ostomy bag. I don't want to answer questions. I don't want it to be something that people relate to me. I don't want it to be a topic of conversation. I would much rather keep it covered, and to do that, I needed to have appropriate clothes. Flowy tops and high waist pants. I dressed that way to make the bag less noticeable. In reality, tweaking your clothes is a small price to pay to be UC free. I wasn't embarrassed, I just don't think it's anyone's business. If i felt comfortable telling someone, I would tell them at my own discretion.

Actually toward the end of having the ostomy, I realized that dresses were the best for covering. I wish I had thought to wear them earlier.

I always hated the involuntary sounds too. I think that actually freaked me out the most. Wearing a billowy top wasn't so bad compared to a noise. I had a bit of anxiety about being in a quiet room because of the potential for noise. Again, maybe insecurity, but i don't want to explain the fart sound.

So no, it wasn't medically necessary to change my wardrobe, but I didn't want to shout from a mountaintop "check out my ostomy bag". If that's a body image issue, so be it. I just want to feel comfortable. I wanted to be restored to myself if possible, and that includes wearing my normal clothes.

I actually wore whatever I wanted often, especially with my end ileo. The loop never stopped going so it was much more difficult. The problem was that I would have anxiety about if there was a bulge. I remember the people at my doctor's office thought I had been reversed because they couldn't tell I had the pouch and I was wearing my little jeans and tanks. It really depends. Sometimes I was fine, other times I would end up with gas in the bag and a lump under my clothes. Any issues I had were multiplied 100x with the loop. I went to the beach and I wore a high waist bikini. I would have never worn that before surgery, it was cute and I would still wear it now, but it was definitely not something i would have bought if I weren't trying to cover the ostomy pouch.