Step 2 is tomorrow

Tomorrow I have to be at Yale in New Haven, CT for my step 2 of 3 in my jpouch process. I'm a little nervous, not so much for the surgery because that's the easy part, all I have to do is go to sleep and they even do that for me. It's just the aftermath and the not-knowing of how it'll all end up...just general anxiety I guess.

Hopefully all goes well and smooth and I can stay on schedule to get the reversal on August 29th.

Wish me luck, please!

Best of luck Rabbit! You'll do great....wishing you a very speedy recovery. Give an update when you're feeling up to it. :)

Good luck. I am sure everything will go well :)

Good luck, you are more than halfway there.

Good luck rabbit!

I'll be sending positive vibes, good thoughts, and prayers your way!

Just a quick update.

All went well. Experiencing some discomfort with the catheter and as long as everything heals right I'll have to knock the dust off my butthole and start using that thing come the end of August.

I'm still heavily medicated right now but look for a good sized post in a couple of days, which I'll go into more detail.

Thanks again.

First poo will be cobwebs ;)

So here's a little update.

Because I had some crazy bladder spasms during my first step, which they attributed to the stents, they left one stent in post-op as well as a catheter which they plan to keep in for 4 days. Let me just tell you, that stent is extremely painful. It would cause spasms which would make my penis "flex" almost like when you try to get the last drop of pee out and when that would happen it'd cause an unbelievably painful burning/stinging sensation. So the first night I got zero sleep.

Well once they removed that I was able to get up and walk around and what-not and things got a lot better. I did get a fair amount if sleep last night but since I cannot push my pain pump while I'm sleeping I wake up well behind my pain management. It's okay, I can tough it out. Compared to step one I can't really remember which was more painful but I can tell you my abdomen is extremely sore. Also, since there was a fair amount if bleeding when they created the pouch they packed by butthole with gauze. So I can feel that in there and they plan on removing that today.

Overall, I think things are going rather smoothly. No major issues. In the next two days I should get my catheter removed and my bowels should begin to wake up so I can start eating a big. I am on clears and I have heard gas pass through my stoma so that's a good sign.

One thing that I wasn't prepared for was the "bridge". The bridge is for loop ileostomies. It's literally a rubber hose they loop under the ileo to keep the loop ileostomy from falling into my stomach cavity while the sutures heal. It's no big deal or anything I just didn't know about it. In 2 weeks they'll remove it and I can start getting x-rays and dye checks to make sure the pouch is in good working order.

The surgeons also said the procedure went really well and the pouch came out great. So that's pretty reassuring. The plan is to get the reversal in 6 weeks barring any type of set backs.

If anyone has any specific questions they'd like to ask feel free and I'll do my best to answer them.

Also, here's something pretty neat. I usually have my UC stuff treated at the VA which is pretty ghetto. Due to logistical reasons I've had this procedure done at Yale and the rooms are way nicer and the amenities are much better. They even gave me a tablet (a samsung galaxy tab 12") that's connected to wifi so I can stream movies and surf the web. It also has this "bedside" feature which allows me to pull up my medical records and I can see what time and what meds are scheduled as well as my recent vitals. I can even see the nursing/doctor staff as the shift changes. I can also order food, warm blankets, heat pads, etc. Lastly, I can send messages to my nurses and surgical team if I have any questions or anything. It's unbelievable how far things advance in sic a quick amount if time.

Again feel free to ask anything. Thanks again for the well wishes.

Quick update:

My wife will be bringing my laptop today so I'll be able to type up a more extensive update but just something really quick that I've never seen mentioned or have read about regarding a loop ileo.

The bridge. So when I woke up and did the inspection of the area for a lapro hole count and just general over view I noticed something huge hanging out of my stoma. At first I thought it was the loop ileo since I've never seen one and knew the looked different. Upon further inspection I saw the actual stoma and this huge rubber tube that was shaped into a circle and stitches together. So naturally I asked the doctors what that was.

So, when you get a loop ileostomy they essentially pull a part of your small bowel through your stoma hole and slice it open so they can divert the stool to come out rather than continue on into the newly created pouch. So with that they also suture the stoma to the abdominal wall much in the same way they do for an end ileo but with a loop since it's "bent" in order to protrude out of the hole and the whole thing continues to do it's anastomoses it could "fall" back in if the sutures are healed all the way. In walks the bridge. The bridge is a piece of rubber that slips under the loop ileo and prevents it from falling back in until the suture line has healed. So basically In 2 weeks I come back and they cut the tube and pull it out.

In the mean time however I do not plan to go anywhere I'm not comfortable as the budge from the tube will make the ostomy impossible to hide under summer clothes. For some of you it might not matter but in still insecure. Either way I thought it was a nifty and simple idea and I haven't seen it mentioned elsewhere.

I'll give a full update of how the healing/soreness process is and any complications I've had tonight when I get my laptop. Thanks!

Hi Rabbit! I'm so glad things are going well with you, and it sounds like you are being taken care of in a great centre :)

Keep us updated and best of luck!

Update:

So I guess I dont have as a huge of an update as I'd like. However, today (Monday) I'm getting my catheter pulled after 5 days of annoyance. If when they pull the cath I can pee on my own I could be released , if not I'll stay until I can. I'm in no rush honestly, I'd much rather make sure every issue is resolved before leaving so I don't have anything pop up while I'm home. Regarding the catheter it has been the most uncomfortable thing to deal with starting with the stent and then since it's been in for so long the risk of infection has gone up and the "mechanical" irritation has been annoying (mostly comprises of general itchiness or the feeling that I have to pee all the time).

I'm not sure how many, if any of you, followed my updates from step 1 but I had a severe back pain incident while in the hosptial which we never found out what it was caused by. This was the reason the stent was left in post-op because the theory was that one of my ureaters became inflamed from the stent and catheter removal. Well it happened again. I still had the catheter in but the day after the stent was removed it happened. What I think is happeneing is that when the stent is removed my ureater becomes inflamed and when this happens urine cannot pass from the kidney to the bladder and the kidney fills up and either spasms or causes my back muscles to spasm. This is excruciating, I cannot overstate that enough. They had me on everything imaginable and still being half sedated I ccould still feel it. Again, like last time, the only thing that quelled it was a heating pad. Convieniently enough the hospital does not have these, they have the crapty little shake heat packs which weren't enough. So my wife ran and got one and things were all good.

Other than that things have been good. I can confirm that post-op pain/soreness is definitely higher in step 2 than step 1. This has to do with how low they construct the pouch. Its not unbearable by any means just more so than step 1, in my opinion.

My reversal is to be scheduled 6 weeks post-op. It was initially scheduled for august 29th as a place holder but it looks like September 5th might be the day, based on OR availability. I'm excited. In the meantime I have a few things to break up the weeks in between. At the 2 week mark I go and get the bridge removed and sometime after that I go for the dye/xray of the pouch to make sure its healing right and there's no leakages. One more bonus I learned from surgery was that there were very minimal adhesions which is always good. Hopefully that stays.

Anyways, thats pretty much it. The time in between is just adjustment time and will probably be similar to post-op step 1. I hope this gave a little insight to those who are still in the process of the jpouch procedures or who are contemplating getting it, or just general knowledge. If you have any questions feel free to ask.

One last thing, does anyome have any advice regarding any significant differences (if any) between the care of a loop ileo compared to an end ileo? That's all. Thanks!

Post Edited (Rabbit81586) : 7/28/2014 12:46:11 AM (GMT-6)

It's probably because of the catheter being in for so long. Sorry I cannot give any advice about caring for the loop vs. the end ileo. I only had a loop since I had a two step procedure. All I know is my loop was the pits!

Sounds like everything is going smoothly. They took the bridge out before I left the hospital and now that I'm hearing yours will be in for two weeks, maybe mine should have been left longer. My stoma ended up "sinking in" somewhat making for a miserable 3 months living with it.

Hope you get to go home soon! :)

Pluot said...

That's the only real difference I can think of -- I had to change my routine a little bit with the loop because of the hot weather and liquidy output, but it was more or less the same (I switched from Hollister Adapt rings to Eakins, and I added a belt).

Liz makes a good recommendation on the belt, it was really helpful to me to have the extra support which also added some more comfort to me having the belt(took some weight/pressure off). You'll probably have more output with your loop than with your end ileo so either you'll be emptying more often or your ostomy bag will be more full before you find a bathroom.

See if you can grab some samples of the high-output bags before you leave the hospital; they are good for sleeping through the night so you don't have to wake up to empty.