I'd like to share with others who may be facing the J pouch surgery, my experiences with a less commonly seen 1 step surgery. Prior to surgery on Oct 6th (Yes, I am still very much so recovering right now, so I by no means have all the answers), I was scared and felt like the unknown was killing me. Unlike many here, UC wasn't the cause of me needing a J pouch. I had one stupid spot of low grade dysplasia (LGD) found in the right side of my colon....and only found once in one spot.

I'm 34, female, no kids and I live a very active life. Having to make this decision was the hardest thing I ever had to do. I only used the bathroom once a day...maybe. I had no pain, discomfort, or knowledge that I had a "problem" until my annual colonoscopy results came back with this low grade dysplasia thing I had never heard of. That was in May 2011. Over the next 4-5 months, I would talk to 4 surgeons and several people on this site to help me find my way.

After speaking with all of these people, I determined I had options. Sounds like a good thing, yet I was clueless as to what I should choose. I learned "some, but few" surgeons will leave your rectum in, some will do the procedure in one step instead of the usual 2 steps. I spoke with 2 surgeons in ATL where i live and they both sounded similar. 2 step laproscopic was the way to go and remove everything. Why would you leave your rectum in they asked. It sounded crazy to them. For me I was just trying to evaluate my options and taking the least amount possible sounded good to me. Again, one spot of LGD EVER...why not try to salvage my rectum. My LGD was FAR from the area of the rectum...opposite sides in fact.

Only one surgeon thought leaving the rectum in might be good for me. He said I was young, still of child bearing age and it was less likely to cause "potential" fertility issues for me later...since I do want kids one day. My issue with each surgeon in ATL was that none of them (even the two who are in this BEST Doctors of Atl magazine) do this surgeon with enough frequency to make me comfortable. I had no idea what to expect, but I knew I wanted a surgeon who did. I wanted him to do these things so much he could do them in his sleep. One surgeon in ATL told me no one in ATL does this more than a few a every couple of months.

Fine, then I needed to find someone else. I really didn't want to do this out of state, but what choice did I have. My family is from the Raleigh, NC area. I found a lady on here who like me, had LGD and was similar age to me, and used a surgeon at UNC Chapel Hill named Dr. Mark Koruda. It wasn't easy getting all the referrals and junk together, but I got an appointment with him for about a month out. He's a busy man. Good news to me.

When I arrived, I could already tell this was a different kind of place. They had a routine, they knew J pouches inside and out. While I was already very knowledgeable about J pouches, I had no idea how a one step worked or if I should do it. I admit that the option sounded GREAT! No bag. The thought of the bag scared me to death. The thought of infection from using my new pouch too early scared me even more. I also knew he didn't do it laproscopically. I didn't want a huge scar. I wanted it all huh? Clearly accepting that I had this issue and needed surgery took me forever to come to terms with. I don't think I ever did until I was rolled into the operating room. Everything became real.

Prior to surgery, Dr. K explained anything I asked about. I didn't know what to ask, but this site had helped me get questions together. He had an immediate answer for them all. I was instantly comfortable that this was my surgeon. I scheduled the surgery almost 30 days later.

Prior to surgery, Dr. K told me I could expect 7-10 days in the hospital. I would have a horizontal incision along my bikini line, I may or may not need a NG tube (again, I had to ask him about this), I may need pain meds for the entire time while I'm healing...he has seen it all and has stopped predicting when people will stop hurting. I was basically told I will be back to normal after this surgery and be able to eventually do all the things I did prior....even have kids. I may have issues...no one knows until I try to get preggo. Again, more uncertainty. What i did know, was that I would be free of my colon and risk of cancer that I currently had. My GI in ATL said my risk of developing colon cancer was around 56% in the next 5 years. I was having surgery! I don't want cancer. No one could tell me when to have the surgery. That was thankfully up to me and its controversial as to when/if you have it at all. For me it wasn't. I don't take chances with my life when I KNOW it can be prevented.

So onto surgery. I had a pre op appointment 2 days prior to my surgery date. I had no time for surgery until the afternoon before my day. At pre op, Dr K answered any last questions I had about diet, confirming my incision placement, pain meds I wanted to be on, follow ups etc. Most importantly, I met with an ostomy nurse. She drew a "dot" on me with a sharpie where my bag would go, should they determine during surgery my one step wasn't going to happen. Dr. K said it was rare, but could happen if my small intestine wasn't long enough or if something happen with the staple gun and the staples didn't take to my small intestine...stuff like that...and I probably even messed up explaining that. I just knew the first thing I would do in recovery is reach down and feel for a bag...and hope it wasn't there. I also got a bottle of special soap at that pre op appt, and was told to bathe in it the night before and morning of surgery. I wasn't to put anything on my body other than this soap. No lotions, no deodorants, no hair gel, no powders, no make up, etc. I guess all normal surgery stuff, but this was my first surgery. It was new to me.

My surgery was scheduled for me to arrive at 6am. I went into the pre op room shortly after I arrived. I was allowed to have two people go back with me. Eventually, they let everyone back to see me to say farewell. We were told my surgery would start at 7:30am and was anticipated to last 6.5 hours. Recovery would then be about another 1.5 hours. During my consultation, Dr. K had told me he thought he could do my surgery in 3.5 - 4 hours...so I assumed the 6.5 hours was just them being safe in estimating my family's wait time.

My surgery lasted 4.5 hours. They immediately told my family everything went well. My colon didn't look healthy (meaning you could tell I had UC 14 years) and I didn't have a bag! I would then be in recovery for an estimated 1.5 hours. Well, that ended up being 6 HOURS! I have no idea why it took me so long to wake up. I just remember people asking me my name and I wanted to tell them, but I couldn't. I just fell back to sleep. Eventually, I woke up. My mom was there. She didn't stay long, she said she was going to leave and let my dad come back. It felt like forever before he came back. They said he had to wait an hour. No wonder! I only found this out later. So around 6pm, I went to my room. I kinda remember the ride there. I remember when I got there having to pretty much get myself off the rolling bed and onto my hospital bed. I didn't hurt though, so it wasn't a big deal. I'm glad I had pretty good upper body strength (and I just mean pretty good...not great) because over the next 2 weeks in the hospital I needed it alot to pull myself up in bed.

All of my family and a friend were in my room with me. I don't really remember the discussion, but apparently there was a JP tube in my side that drains blood from my incision for a while. It was all bloody and needed to be changed. Someone took a pic of it with my phone, that is the only way I even know what it looked like that night. They changed the gauze and it was fine for the next few days. After about 4 days I think, the Residents helping Dr. K came in and removed it. Speaking of tubes. Now is a good times to tell you just how many I had in me. So having a one step means no bag. Apparently not for everyone, but for Dr. K's patients, that means you get a rectal catheter for about 4 days or more in my case while you rest. I also had the regular Foly catheter. So my surgery was on Thursday. Dr. K said on day 4, that would be a key day to see how I am doing. I was one nothing but ice chips night one. I was in and out of sleep. I would ask my brother to feed me some and sometimes fell asleep before he could give them to me. I also fell sleep sometimes after he put them in my mouth, but before I could swallow them! I had to tell him to keep me awake so I don't choke. I was clearly out of it.

Day 2, Friday, I only recall it being a lot like the next few days. I slept a lot. I had a hard time keeping my eyes open. I had a pain button with Dilaudid in it. I could push it every so often. At first it wasn't enough, so they increased it to every 8 mins. That seemed to work for me for the next 14 days I spent in the hospital. I wasn't in pain that couldn't be dealt with until they removed that pain button. I was allowed to have liquids on Friday. I remember Ginger Ale tasting SO GOOD...and I don't even like it that much. Anything other than ice was nice. I ate jello too. It tasted too sweet. So did Gatorade. Weird, none of this was true pre surgery. I started asking for sugar free everything. I got up to walk on this day. It wasn't too bad. I was just slow and carrying all those bags "behind me" was annoying. They didn't hurt as long as I held them though. I needed to keep them in the right position.

Day 3, Saturday, I tried to watch part of a football game, but it mostly watched me. Again, I was still very tired and slept a lot. I did manage to get a bird bath from the side of my bed. It felt good. The Dr.'s said I could eat real food. So I did. Why did I do that? Now, I had read on here that you shouldn't try to eat anything solid too quick. I ended up throwing up on Sunday. Apparently, my small intestine didn't pass this test and was still asleep. What doesn't go down, comes back up.

Day 4, Sunday, my test day per my surgeon. I woke up apparently eager again to eat..again, I hadn't thrown up yet and didn't know i had an issue. I order breakfast. My eyes were bigger than my stomach. I ordered pancakes, toast and who knows what else. I only ate about 3 bites. "Eating" wasn't something I really wanted to do. I just felt I had to do something. By later that afternoon, I never made it to food again, I threw up. The resident came in and said I may need the NG tube. I said, do I have to have it? He said, no, it depends on your tolerance for throwing up. lol, clearly a nice way of saying...here, im going to leave the NG tube right here and when you get done fighting it, you can have the nurses put it in. I didn't want that thing. I walked again that day, took another bird bath. Things were good most of the afternoon and evening. At 2:30am, I was vomiting again. This isn't your normal vomit. This was bile and stomach acids coming out of my mouth and nose. I felt EVERY INCH of my body, abs, intestines, and stomach move as it came up. I said I was ready for the NG tube. I’m not convinced these nurses knew exactly how to put this tube in, but I will spare everyone the details and just say it was awful…but worked. As soon as they put it in, a liter of fluid came out. I would have had to throw that up had I not asked for the tube. No thanks. That tube stayed on for several more days. I ate ice chips during this time. Ok, with me, I didn’t want food anyway. I did, however, want something to drink. I didn’t get it until the tube came out.
The next few days continued about the same and on Tuesday, Day 6, I got my NG tube removed. It apparently was remove tubes day. Later this evening, my rectal catheter and Foly catheter came out. YAY! I could now walk without tubes. However, now I had to get up to go use the bathroom. Not fun. I really didn’t want to move. It was a challenge to have the motivation to get up to walk. I tried to walk 3 times a day. I know I needed to do more, but I just didn’t have the motivation to do it. So, as the day went on. I tried liquid foods again. Again, everything was sweet. I ate though. BUT, nothing was coming out of my butt. Houston, we have a problem. There is clearly stuff down there and it was emptying when I had a bag. Why don’t I have urges? Dr. K said I might go once an hour until I start eating more food of substance.
So on Thursday, Day 7, I was told I needed the rectal catheter again. Ok, fine, but was it going to hurt? I also wanted a shower before this bag got added back. So I shower for the first time in 6-7 days and washing my hair was like heaven. However, showering was like running a marathon. I was exhausted afterwards. I also felt my first urge to go poop! Yay, maybe I wouldn’t have to have the rectal tube again. I went, but no such luck in convincing the Dr’s to not reinsert the rectal tube. After my shower, they put it back in. Right there on my bed. It was uneventful. Didn’t hurt. As soon as it was in, more poop emptied into it. Clearly my pouch and small intestine still weren’t fully working yet. Oh well, I continued for a few more days with the bag. I walked with the tube and I went to pee with it in. It was annoying, but otherwise didn’t bother me.
I don’t recall just how many days the tube stayed in, but I know from here out….it seemed maybe I was getting a little better rather than going back and forth. I took a shower with help every day. I felt like I was exhausted every day too. I sweated out my sheets every day and night…an apparent side effect of meds. I often needed anti-nausea meds and I had to force food in my mouth. I had NO desire to eat. I just wanted to not hurt, not feel nauseous. I might eat a corner of a soft roll with some peanut butter and jelly for lunch. For breakfast, some cereal. They sent me random food because I’d often wait too long to order food. I really didn’t want to eat. All I wanted to do was drink water. Water was my consistent desire. I was so thirsty. My lips and skin were dry. Very dry. I seem to blow out my IVs everyday as well. Apparently one of the anti-nausea meds I preferred also wasn’t great for my IV. My mom helped me stay on top of my pain meds during this time period at nights by pushing my button if I asked her to, or if I was asleep for a while, I asked she push it randomly so I didn’t go long periods without meds. Long periods without meds wasn’t a good look.
The next momentous occasion was on Friday, Day 10. They took away my pain pump and were working on getting me out of there. I was allowed to eat. I didn’t eat much and like I said, I still struggled with nausea. My Dr.’s clearly didn’t look at how often I was pushing that pain pump. I woke up Friday, hit my pain button before I showered. I felt good after my shower, so I went for a walk right after it. Usually, I had to rest after everything. I walked around the entire floor and even to the other side of the hospital. I had “pep” in my step. I thought, man…I’m good and ready to go….I just need this rectal tube out…lol. They took that out that day too. I starting using the bathroom. All seemed good. Until….the pain pump was gone. They put me on 2 Oxycodone pills every 3-4 hours. I could ask for a shot of Dilaudid every 3 hours to compliment if I needed it. I NEEDED IT. Friday was my WORST day. I clearly didn’t realize how much I was relying on my pain button. Long story short, it took me until Day 14, Wednesday to get my pain under control with oral meds so that I could go home. I even threw up on Sat…and Sunday. Not enough to get me another NG tube, thank God.
Wednesday am arrives and I take a shower. It was exhausting. I almost passed out. I rested. I walked and rested until discharge at around 12pm. We were on out way home and I felt EVERY bump in the road while riding. Not fun. This is what my pain feels like. I FEEL everything going through my body. I FEEL my small intestine. It is like a lump in there that just hurts. Everytime something digests, anytime gas moves, I feel it. Using the bathroom doesn’t hurt. Movement in my body hurts.

Day 1 at home wasn’t a good day. I hurt. Sleeping in the bed was difficult because I can’t get out by myself. Or maybe I’m scared. I don’t have the strength to lift myself. At home I don’t have the “bar” over my bed to lift myself like I had in the hospital. I don’t have urges to go to the bathroom. I don’t think I am normal in that regard. Nothing I eat seems to thicken things up. When I feel like I have been sitting for a long time and surely I need to go…I do. Something almost always comes out. It feels great when gas comes out. It just doesn’t come out alone! Lol. I had one accident one night. No idea what happened, but thankfully it wasn’t a huge mess.
I seem to be getting stronger and have less pain every day I am at home. I eat a little bit more now, a week into it, than I did when I arrived at home. I lost 17 lbs in the hospital and another 4-5lbs or more at home. I haven’t weighed myself in a week, so I’m hoping the additional food I have eaten stopped all of that. I sit in a recliner almost all day. When I am not in the chair, I am going to the bathroom or trying to walk outside. At first, I needed a walker at home to walk outside. Holding my own weight was tough. That only lasted a day or 2. Now I walk longer distances without assistance. I use baby wipes religiously and they seem to work well. I have a chair in my shower. I couldn’t take a shower as easy without it. I would be exhausted. I use that chair to brush my teeth and do my hair too. I seem to be in the most pain when food is moving through my body. Otherwise, I seem to be ok. I’m starting to know when I need to pee, but still no urge to go poop. I just go after things have been “moving”.

I have my first follow up appointment next Tuesday, two weeks from my discharge date. I will continue to update or answer questions anyone may have. I know this was long, but I hope others who face this and maybe someone who will be presented with a one step as an option, will have less uncertainty after reading.

This message has been edited. Last edited by: JG,

I'd also like to add this is just my experience. I am certain others have had the one step with very different results. Anyone is welcome to share their experience, I just wanted to fill the void of detail with one step surgeries for those considering it...or maybe never knew it could be an option.

Wow, thanks for sharing your story JG. Your circumstances sound very much like my mine. That is, in regards to how I was diagnosed (years of well-controlled UC,one area of LGD). I am meeting with a Dr. Huong at Shands in Gainesville, FL on 10/31. I'll be armed with lots of info thanks to you, and a LONG list of questions! Best of luck to you as you heal, and look forward to reading about your progress!

good luck to you PamShea.

I've thought about a few other details.

1- How many times am I going a day right now? I don't have the urge to go, but I get up and go about 6-7 times a day. I can feel when I have to pee sometimes, but generally I am just paranoid of back up.

2- I had a "pain ball" leading to my incision for serveral days while in the hospital. IT was a small ball with something like novacain (sp?) in it and made my incision numb so I didn't feel it. There was a tube running from the ball into my incision. They eventually took it out and it didn't hurt. I never really had incision pain, so I'm guessing it did its job. Again, one more tube!

3- What did I eat today? For breakfast I had a cinnamon bread stick from Pizza Hut. Lunch I had left over pizza. Dinner I had meatballs and white rice with tomatoe sauce. I also had a few fully cooked green beans.

In general, I can't tell the difference in what I eat...so I just try different things and hope I like them. I just stay away from raw foods for now. I like peanut butter, bread, cereal, pasta, lasgna, meaballs, rice, chicken and fruit cups. To drink, I tend to stay with at least 3 bottles of water a day and some G2 gatorade...that is the sugarfree kind. It still tastes sweet, but it is nice to change things up and it has good electrolytes. I eat slowly, chew well and drink as I'm thirsty. Today I was very thirsty. I feel like I've been drinking non stop.

4- How many hours do I sleep a day? At night I get at least 8 hours, sometimes 9 or more. I get interrupted to take my meds every 3-4 hours. Sometimes I have to use the bathroom too. Usually that is at least once, but not usually more than twice. I also sleep in my recliner during the day as I get tired. The weirdest things seem to tire me out. Like writing on here. After I made this post earlier today....I needed a serious nap. After I walked this afternoon, I needed another nap.

5- I have a raised toliet seat for the time being so I don't have to go so far down or get up. Its great and I recommend it. I also have a seat in the shower. Another life saver. I personally find it hard to go up and down stairs, so I don't. It is energy wasted, so I don't do it and luckily don't have to.

6 - I have been stretching my pills 4 hours (rather than 3) today and I seem to be fine. I have less pain today than any other. I don't seem to be feeling EVERYTHING digest like before.

Ok, I'll add more later if I think of something.

JG thanks for posting your experiences. Every little bit helps trust me. Like the shower chair etc....what kind of pain meds do they have you on at home? I spoke to a friend of mine today she has had a j-pouch for 20 years and has done well, she has had some issues but for the most part she has been living her life fully. Works full time, takes care of a home and yard and travels alot!!
She said she was going to check out this site and see if she can add some input from a veteran poucher for us newby's soon to be newby's.

God Bless JG,

Whether 1, 2, or 3 step, these are tough journey's for all of us. Some fare easier than others but we all have our trials and tests!

I believe you are doing great and wish you continued speedy healing. The biggest thing I picked up from your very detailed post is that you are determined to keep moving forward! Soon you won't be so exhausted and the shower chair and elevated toilet seat will be distant memories.

Best regards,

Mark

{b}J-me[/b].

I'm so proud of you. You really have earned your pouch. You're one tough lady!

Thank you for sharing your story. Finding a colo-rectal surgeon that you're comfortable with can be a pain in the butt, as is the paperwork. Thank God you're well prepared for the battle.

I've been trying to make people aware of the proper pain management since my first posts. It's so important protocol, and most folks miss it totally; more important, the docs appear to miss it totally. They're just eager to taper you off the IV meds to change into oral, and don't really think the proper pain management at all. Thus, patients suffer unnecessarily.

You'd not have had any problems changing to the orals pain wise. The concept is very simple: take the pain meds regularly regardless of the felt pain so the pain level will never increase and you can eventually taper off the painkillers comfortably. Should one let the pain level increase, then one needs more pain meds to extinguish the pain to get back on track. You end up taking more meds by letting the pain increase, not to mention suffer from unnecessary increased pain. Makes no sense.

Again, the pain management chart: http://i47.tinypic.com/x5qhbl.jpg

Pain med chart: http://www.vaughns-1-pagers.co...iller-comparison.htm

It's been a rough road for you, but the worst is over. Now you just need to gain more energy,and you'll be back home in no time. Don't you forget that I'll be needing you in December.

Speedy recovery and God Bless,

Tino

JG, I printed out your story for my husband to read I think this will better help him understand what I / we will be up against.
Thanks again for taking your time to do this.
Holly

Thanks guys. I can't wait til all of this is over.

TheStomac - I also can't wait til that raised toliet seat and shower chair are a memory of the past. I feel like I am getting stronger some days and don't need the shower chair and then others...I couldn't make it through without it. Also, last night I would have sworn to you that I tore my incision from my surgery while trying to adjust my sleeping position. It made me cry it hurt so bad. I had my mom look at it and she was like, you're pretty far along in healing...it must just be something you are feeling inside. Clearly it was and I felt every inch!

All in all, I'm feeling good most days. I'm fighting fatigue. I have little energy...especially after I do something to use energy. My main complaint is not being able to sleep comfortably all night in bed....and sweating. I have the worst side effect from Dialudid....sweats! That is better than itching, but still! lol. Percocet makes me itch.

Every week brings better feeling and progress, so I hope in another 4 weeks I am ready to go back to work.

I had the 1-step J-Pouch surgery 14 years ago. The pre-surgery step that my surgeon had me do was take Fleet the day before. It completed "cleaned" my insides out and I HATED that step. However, it was for my own good. He said I was less likely to have complications or infections. I'm glad I followed Dr.'s orders, too. Right after my surgery, my friend had hers (same surgeon as me), but she DID NOT do the Fleet step--against his orders and she ended up having several complications that led to her being stuck with a bag. Not trying to scare anyone, but I really feel it is important to follow the dr.'s regiment to the letter no matter how bad it sounds.

I want a one step because I know I can't deal with the bag mentally and emotionally. How do you demand it if you want it? I mean clearly not everyone can have a complication from one step. I just don't want to do 2 surgeries.

Thanks for the great description. You are doing better than I was after my step #1!

vanessat,

A lot of factors determine if you are a good candidate for the 1 step. It is pretty rare.

JG mentioned that she had her UC under control and the colonscopy showed dysplasia. So she wasn't coming off of months of prednisone or a colon filled with ulcers and such. There are other factors as well. Some have to have the surgeries in 3 steps. I had a 2 step because my colon was in sad shape, I had not been on prednisone etc.

I didn't think I could do the bag either but you do what you have to and I learned how to change it really fast by the time the 2nd surgery came around. By having it I know somewhat how it would be to have a permanent stoma.

Take care everyone.

quote:

I want a one step because I know I can't deal with the bag mentally and emotionally. How do you demand it if you want it? I mean clearly not everyone can have a complication from one step. I just don't want to do 2 surgeries.

The surgeons do what they deem medically necessary and proper. I was in remission for years and only had to undergo the surgery due to dysplasia. Your situation, unfortunately, is worse. I seriously doubt any surgeon goes for one-step for you. In addition, I'd prefer to proctocolectomy in two steps. It's a better guarantee that the pouch heals properly.

The 'bag' is not a big deal. You'll get a lot of help with that from the stoma nurses and even home health visits should you need those. If you end up with the j-pouch, the 'bag' is only there for a few months. If I were you, I'd prepare myself mentally for that option. It's tough for you now, but it will get better.

The end result is what counts: a healthier, new life.

Hang tough,

Tino

**************

JG

Good to hear you're preparing for the marathon.

You don't want to hear this, but think about tapering off the Dilaudid. The Melatonin pills are great sleeping pills.

You've got 43 days to recover fully. You promised!

Cheers,

Tino

I don't have UC, my colon is in good shape I just have 10o polyps from FAP. My rectum has dysplasia though. One surgeon said it was up to me to decide. The other 2 said they do 2 steps only.

I will ask though and see. I rather have one and be done with it all.

I agree with the one surgery is better than 2 and you might be the perfect candidate for it. I think they only save 1-2cm of the rectum but that might not be possible in your case. Please let us know how you are doing.