What can I expect after step 2 of 3?

Hey there. I had Step 2 of 3 at the Cleveland Clinic on August 4. I know how you feel. I had gotten quite good with my end ileo and was anxious about the next surgery. Today, almost 8 weeks after Step 2, I've got my loop ileo and I'm doing OK. In fact, I'm actually excited about takedown in early November. But back to your questions. I've posted them below with my responses:

1. What about recovery time compared to the first one? I could go back to work (a desk job) after two weeks, but I expect this surgery to be a little harder to recover from.

--I had read on one of the forums that the second surgery is the hardest of the three so I prepared mentally. The reality--for me--was that the second surgery was much easier. However, my first surgery was emergent and I was anemic, malnourished and had lost 35 pounds from a raging flare that could not be controlled with drugs. I went back to work six weeks after that surgery but I was out from work a total of 12 weeks (six weeks in the hospital). With the second step surgery, I wanted to be prepared. I gained all my weight back and was in the gym--lifting weights and biking--for 4 months prior to going to Cleveland. With the second surgery, I had the operation on a Friday and was discharged on Monday. The only issue I had was dehydration on the 5th day--you've got to be mindful of how much fluid you take in versus output. But I felt so good. Honestly, I felt like I could have gone back to work after two weeks but my surgeon and the nurses told me it's not how you feel, it's your need to heal. Quick story: I had a consultative phone call with my surgeon's nurse on Day 10. She asked how my daily walking was going and I proudly said I was walking up to two miles each day. She literally reamed me out on the phone and said stop immediately for a week. She said that all that walking this early (up and down movement on pavement) could negatively affect the complex sutures that were holding my new j-pouch in place, etc. Freaked me out a little, since I had read "Walk!" every day. So I did as told. I also waited 4 weeks post-op before returning to work. I have a desk job in marketing so the surgeon was OK with returning early. They had advised 6 weeks.

2. Any major differences in every day life between end and loop ileo? It seems like most people hate the loop, but what are the actual differences? Just more (liquid) output?

--The main difference--at least in the first few weeks--is to make sure it doesn't leak! My end ileostomy was a bit longer than most. The length would range from about 3/4 inch to almost two inches. That made it easy to take care of and I became expert at keeping my skin clear and changing the bag. Fast forward to today....I am so glad I had the experience of caring for the end ileo before I got the loop. My new stoma is very close to the skin, probably only a half inch. Fortunately, the stoma nurses I had at Cleveland Clinic taught me some new tricks. Like most people, I had skin issues while my belly swelling went down. I used the old tried and true crusting technique, but I also used a colloidal ring underneath a deep convex one-piece bag (Sensura Mio by Coloplast). And yes, as you pointed out, the output is a lot more liquid than the end ileo. That's why you've got to be even more vigilant about staying hydrated. I measured my output in a measuring cup the hospital gave me for two weeks while I was home. That was helpful to the nurse when she checked in on me and recommend that I "up" my imodium dosage from 4 to 6 times per day. I never had to take imodium with the end ileo. I'm also more vigilant with my diet regarding foods that slow down the output--you know, the BART diet: bananas, applesauce, rice and toast. My surgeon also had me eating a lot of potato chips after surgery. She said the chips may be empty calories, but I needed the salt and they helped slow down my output. The chips also helped stimulate my appetite as I had no interest in food after surgery. As you know, you need to eat after surgery, especially protein.

3. Could you still use the same appliances for your loop that you used for your end ileo? Or did you have to find something new?

--I went from using a flat wafer with my end ileo (part of a 2-piece Convatec system) to using a deep convex 1-piece system (Sensura Mio) for my loop ileo. Most loop ileos will need a convex system because the stoma is close to the skin.

4. Is the loop ileo not circular like the end one is? I think I heard something about this. Which means you would need to cut the hole yourself for each bag? Sounds bothersome, if that's the case.

--My loop ileo is somewhat oval but I use a pre-cut one-piece bag. However, next to my skin I use a 2"X2" square of colloidal skin barrier that I cut to fit my stoma. That goes on first. Then I put the one-piece bag/wafer on top of the square. This is a trick I learned from the stoma nurse at the Cleveland Clinic. I also wear a Coloplast belt as that helps pull the wafer/bag down on my belly, and that pushes my stoma up and away from my skin. Right now, my skin is doing great but it took a few weeks of tweaking my system.

5. Will there be actual BMs after the 2nd surgery? I'm a little bit confused about this, but as far as I understand you will be somewhat hooked up?

--There should not be any BMs after the 2nd surgery; although I have read online that sometimes a little stool can find its way down the second opening in the stoma. I have not experienced that. But I have experienced a significant mucus discharge from my bottom which is annoying as heck. In fact, my mucus discharge has increased to the point that I need to wear protection at night (a pad in my underwear). I'm already awakened during the night at least once to empty my bag, but lately I'm also awakened by the feeling of a mucus discharge. Only had one "accident" and while it's not as bad as a bag blowout, it's still slimy and wet and not something you want to clean up in the middle of the night.

Hope this helps! Let me know if you have any other questions.

Best,
jfill21 (John)

All your questions were pretty much well answered. I'd add that you're at a greater risk for a blockage with a Loop vs an end Ileo, so chew your food completely and stay hydrated

Have you had any blockages with your end ileo? Do you know the signs to look for?

I dealt with high-output were it wasn't safe to leave the hospital for a few weeks. Usually the hospital stay is longer than with the colectomy, about twice as long.

A convex wafer is useful with the loop, it gives the stoma some additional support. The barrier sheet that John mentioned helped my skin, before using it I would get burns around my stoma.

I also stay on pain meds longer after my step-2 vs step-1.

I had more mucus discharge after my 2nd step.

The discharge is very normal. You have much more intestine there now than what you had after your first surgery. You just had a small rectal cuff and now you have a jpouch, you should expect more discharge. Also they did a lot of work right there, you will experience some discomfort, it will go away in a few weeks after you heal.