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1st step of 2 step J-Pouch - lots of questions

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Posted 9/6/2017 2:52 PM (GMT 0)
I have been browsing these forums for weeks and months leading up to my surgery. As much as I read or tried to learn, no one can prepare you for what it is like.

27 Year old male with UC for 7 years. Ultimately became steroid dependent and failed all other medications. Surgery became the best course. My surgeon performed a colectomy with j-pouch creation as part of a laparoscopic procedure. I am currently on my fifth day post-op. The pain was initially managed with a pump but I have since transitioned to oral pain medication.

If anyone can help alleviate some of my concerns I would feel so much better.

My bag output is very liquidy and contains blood. The doctors say while it isn't good, they have seen this before. After waking from my surgery my bag was filling with blood and I needed one pint transfused via IV. My counts have since stabilized and they say I am trending in the right direction. Clinically I am progressing well. The blood in my bag has me very scared and afraid however. They can tell me it is normal all they want but it feels just like having UC. Blood that never ends.

I am able to eat and tolerate solid foods, my stoma passes waste and gas. Sometimes the gas pains are incredibly painful, especially at night. I am learning my new anatomy and what feels normal.

I also have tremendous anal pain. It can hurt to sit and I am internally very sore.

I am scheduled to have my JP drain removed today, as well as my stoma rod. I am afraid my stoma will retract and become very difficult to manage.

Can anyone here reassure me that some of this is at least normal? It would make me feel so much better!
Posted 9/7/2017 3:25 AM (GMT 0)
At 5 days post op, you still have quite a bit of healing to do. I know i'ts human nature to want to know everything before it happens, but the reality is, there probably aren't any specific answers we can give to ease your mind. At 5 days, you have to be patient. I think anything can be normal at that point. I had some blood in my bag, but it was from my stoma, not in the output. I had 3 steps, so I can't speak much to what's expected in a 2 step, but I can tell you pain is very normal at 5 days. I had 3 steps, so less work with each step, and I was in quite a bit of pain after the first 2 steps. The first was the worst, if I had done the first 2 steps at once, I am sure it would have been even harder. I think you need to relax, use your pain meds and give yourself time. Everyone has pain at 5 days. If you're weak, dehydrated, experiencing severe cramping, have a fast pulse or changes in blood pressure, go to the ER.

How did the drain removal go? I remember having that, it was not comfortable. I never had a rod I don't think, but I believe there are some sutures to stop it from recessing. Mine was somewhat recessed, it was very short and difficult to manage, but I tolerated it for 8 weeks and got reconnected. thinking back to my loop ileo, it was nearly non-functional - but at least there's a light at the end of that tunnel.
Posted 9/7/2017 11:45 AM (GMT 0)
notsosicklygirl,

Thank you for taking the time to respond to me! The rod removal was nothing, I barely knew it was happening. I think it was the sight of a rod sutured into me that had me worked up more than anything else. I still have my JP drain so I cannot speak for the feeling of the removal. I am hoping after the catheter this is nothing... I am very nervous about managing the bag and stoma. I admire all of those who find a way to live normal and happy lives like this. It certainly feels like a big downgrade of quality at this point. The doctors are very pleased with my progress yet I cannot help but feel as if things just seem off. No one can prepare you for how you feel after a surgery like this. I will definitely continue to just try and relax and manage the pain as it comes, because it is most certainly there!


Thanks again!
Posted 9/8/2017 5:06 PM (GMT 0)
After you change your appliance 2 or 3 times (and not on pain meds) you'll get the hang of it. Appliance changes aren't that difficult if you have the right supplies (find the ones that work best for you) and are prepared.

If you are worried about the bleeding then ask them to scope your stoma and find out where the blood is coming from.

You had a very big surgery, it will take a few weeks before you feel 100% but every day you will feel a little better.

I had a 3 step surgery, I was so sick at the time that I don't know if I could have handled a 2 step.
Posted 9/8/2017 7:17 PM (GMT 0)
Thank you for your response!

I am home and doing my best to adjust. Right now I need to cut to fit the stoma which I think will just be more stress because the size keeps changing. It also adds more time to the wafer changing process. I just hate the thought of food and waste coming out of me while I change things or making a mess but I suppose at some point these things will happen.
Posted 9/8/2017 8:49 PM (GMT 0)
Did they give you any supplies to go home with? I was given some disposable medical type towels. I would change right over top of that.

Some people change in their showers. They take off their appliance nd wash all around (and shave) before putting the new device on.

Your stoma will shrink over time. this is normal.
Posted 9/8/2017 9:32 PM (GMT 0)
I have some gauze, but no disposable towels. I was advised not to use gauze because it can be a little rough on the stoma. I can cover it in a hand towel if need be i suppose.

How does someone know when their stoma has stopped shrinking or changing? How long does this process take?
Posted 9/8/2017 11:55 PM (GMT 0)
I have a visiting nurse that is part of my health insurance - she is scheduled to come on the days I change my pouch. The first time she had me do it with a little help from her and then the second time I did it all by myself while she watched. We measure each time and it's been two weeks and the stoma is still shrinking.

My nurse in the hospital said it's good to wait two hours after eating to change the pouch- less likely to get squirts. The first time I did t, the nurse just came by and didn't give me notice, so I had eaten an hour before. We just put a damp paper towel over it while I cut the thing. If it expelled, it wasn't much, I just changed the cover and went back to what I was doing.

Another hint she gave me is to use a heating pad to warm up the pouch/wafer. It makes it easier to cut. But you can't warm it up too much bc it'll melt and be too hot for your skin.

Hope things get better for u.
Posted 9/9/2017 4:19 PM (GMT 0)
Thanks for your input! I had a nurse come as well. She helped me through it but my stoma kept squirting the whole time. It was definitely a battle. I made a mistake of not eating for a little over twelve hours so while there was no food coming out, the stoma was active due to gas and being hungry.

Next time I think I will eat some marshmallows before the whole process. I hope it gets easier and easier because it definitely is a challenge! I have some skin creases and a very active, short stoma which makes it tough as well but I am trying to stay positive.

I find I have confidence until I start to think about changing the whole appliance myself. It will be a learning process for sure.
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