Introduction:
My name is Kyle and this is actually my 4th time posting on this site. I first joined about a year after I was diagnosed with UC, but I started posting updates when I made the decision to have the J pouch operation. As I’ve mentioned before, I’m a very active 21 year old guy who loves sports, working out, good food and good times with my friends and family. I had my takedown surgery (part 2/2 of j pouch) on February 7th, and this is just an update on the process and how I’ve been doing after about 3 and a half weeks.
Some more about me:
Baseball, football and basketball, I love music, especially Weezer and Billy Joel. I’m from Rhode Island and I’m going to school for medical imaging. Also, I no longer have colitis thanks to the work of my awesome surgeon and his surgical team.
Symptoms:
I have zero symptoms because my UC is gone! My body is just adapting to the J pouch day by day and I am finally almost off of prednisone for the first time in years.
3 Weeks Out of Takedown Surgery
So here is my J pouch update. There was no prep for this surgery, only I couldn’t eat anything the night before. It was pretty much the same routine as the first surgery (colectomy and j pouch construction) once I got to the hospital. I got my bracelet and then undressed and put on my johnny. Then a nurse came in to give me my IV and then it was just the waiting game until surgery time. They wheeled me in, put me to sleep and before I knew it, I was awake in recovery. The first thing I noticed was, no more bag! But I also had what felt like a throbbing at the surgical site, I think just from my intestines getting used to working together again. I was then wheeled to my room for the next few days. Once the anesthesia wore off, I realized I was in a lot of pain, mostly due to the amount of gas in my system that I was unable to pass due to my bowels still being asleep. I hicupped a lot and burped here and there but it didn’t really ease any of the gas pain. I walked as much as I could to try to wake up my bowels but it didn’t really help. My doctors has me try some clear liquids (broth, jello, water) the day after the surgery. They went down fine, but I became nauseous a few hours later and threw up because whatever I ate that was thicker than water would not pass trough my system. So I waited a few more days and finally started to pass movements through my j pouch 4 days after the surgery at around 1:00 am, and I went 3 times that night. I figured things were going well, so Tuesday I tried some more clear liquids but things still didn’t feel right. Wednesday came and I felt better, I ate some toast and kept it down (so I thought) but still had a LOT of abdominal pain. Foolishly I let the doctors convince me that it was normal and I could go home, so I did. I felt like crap and continued to throw up for the 2 days I was at home, and then was re admitted on Friday, when they took an x-ray whi ch showed my bowel was still asleep, being the reason why I could not pass anything solid.
So, I spent the weekend in the hospital, on IV fluids only, to give my bowel a chance to really wake up. On Sunday (10 days out of surgery at this point) I successfully had clear liquids without abdominal pain and on Monday I ate a solid, low fiber breakfast successfully and did fine with it, allowing me to come home. From then on it was smooth sailing. I slept great that night, and I now that my j pouch had begun working I was going to the bathroom around 10-12 times a day. I experienced some pretty painful butt burn during that time, but calmoseptine helped a ton with that. Now that I am further out of surgery I have started to take one stool thickener a day, which has reduced my BMs (depending on what I eat, of course) to only about 7 or 8 times a day, and it also helps prevent butt burn. I have also gotten used to dressing my wound. My surgeon left my ostomy site open to heal from the inside out with less chance of infection. The doctors cleaned it, packed it, and dressed it in the hospital twice a day, and now that I’m home and it’s healing well, I do it myself and only once a day, usually after showering. It’s strange having an open hole in your side, but it should heal up pretty well, leaving a decent scar, however.
Although it isn’t the same as having a colon, it is definitely better than living with colitis. And, I know I am still adjusting and things will only get better. With a j pouch, for me anyway right now, I can feel a lot more digestion going on than I used to, and I can feel the food emptying into the pouch. The urgency to go to the bathroom is gone, and it is a different feeling when you “have to go,” but you still know when it’s time to go. I’m currently able to go to school and do everyday things without pain or discomfort, and in a few weeks I should be able to exercise and start working out again (thank God). My recovery for this second operation was longer than average probably due to my dependency on prednisone, making the healing become a little slower than most, so don’t let that scare you if you are about to have a takedown or are considering surgery at all. I am very happy with my outcome and I can’t wait until I am fully back into the swing of things, even though I already pretty much feel back to my old self again.
Medications:
I was given dilaudid for pain in the hospital, then was switched to perkaset while at home for about a week and a half. I am no longer on any pain medication, but have tapered to 5 mg of prednisone daily until I follow up with my surgeon.
written by Kyle Thomas
submitted in the colitis venting area
People should know that I’m tough as nails, I just won’t eat a bowl of them for breakfast.
Kyle, good to hear things are going well, I’m just 5 weeks ahead of you as far as recovery goes and things are really good. I’m back to exercising, travelling, and all my symptoms and drugs are gone. I had to deal with all the things you did in the hospital after my first surgery, fortunately my second surgery went much smoother. I started exercising again at about 6 weeks but I’m waiting till about 12 weeks to do anything involving my abs. Good luck!
Baker,
Sounds like you’re doing really well! I am now almost 5 weeks out and I have started to do a little bit of exercise at the gym, and I agree with you, I’m going to wait a few extra weeks before I begin any core work. I was very relieved when my post op pain subsided. There’s no good without the bad! I wish you good health for the rest of your life and congrats on your recovery.
-Kyle
Congrats to you Kyle and best of luck with continued healing and getting back to your normal ball game:)
Great to hear you’re doing so well post-surgery!
–Adam
Thanks Adam, it’s much appreciated. Recovery is going very well and again, this site is fantastic and I’m so glad to have it to post my story.
-Kyle
Kyle!!
Rockin’ good news!!
:)
Thanks, Bev!
Kyle…Awesome! :-)
Thank you, Shelly!
Hey Kyle! Glad to hear you are doing well :) I am having j-pouch surgery in June and am scared to death! I keep reading post to help me better understand what I am about to go through. Thanks for sharing you story so that people like me can have a better idea of the road ahead. Please keep us up to date on your healing and keep rockin!!!
Jackie,
You’ll do fine! I was scared too, but it helped knowing that I would no longer have to deal with UC, eventually. Just know that everyone is different, so take everything you read online lightly and go into your surgery with confidence and knowing that you will soon be on your way to a fantastic life once again. Also, use the time between now and your surgery to work out, eat healthy and get your body in tip top shape (if you are able) I found it really helped with the recovery process. I’ll be looking forward to hearing how it goes! Any questions feel free to ask.
Best of luck,
Kyle
Hi,
I had takedown 5 days ago and so far it is horrible. I am continually having spasms to go to the bathroom and am going 20 times a day with butt burn. How long does this typically last and do you have any tips to make it better.
Thanks,
Chris
Hey Chris,
I didn’t have my first bowel movement at all until 5 days out of my takedown. after that I was going around 10-15 times a day of just fluid, I couldn’t eat anything because I had an ileus (asleep bowel). Once I could eat I was going around 10 times a day and after another week or two it has become less and less. Eating low residue foods and using calmoseptine really help with the butt burn and don’t worry, as time goes on it’ll soon fade, but I know, it definitely sucks. Also, once your connection of your bowel has had time to heal, stool thickeners (imodium, metamucil) help thicken your stool and reduce frequency as well as butt burn. You will know when you have healed enough to the point where you can start introducing some more different foods into your diet but for now, rest and take it easy and stick to the bland things. Any questions don’t hesitate, I think we may have spoken over twitter as well. Best of luck to you dude.
-Kyle
Hey Kyle,
Glad to hear you’re doing well now. I had my temp ileostomy on the same day you did last year, and I have my takedown in about two weeks. I’m planning on 17 days from takedown to going back to school. How were you about 2 weeks out? What do you take to thicken your stool? How would you describe the feeling of having to go? Can you hold it? Thanks, so happy to be disease free!
Hey Anthony,
Two weeks out was about the time I started to feel great. I was re admitted after being home only for a few days (about 7or 8 days after the surgery) and then went back to let my bowel wake up so that I could eat. When I came home again, I went to class that afternoon and was fine, surprisingly. I wouldn’t recommend doing that though. You will know if you need to rest, don’t push it. Right now I just take the store brand of anti-diarrheal medication which is the same thing as imodium or metamucil. I take one a day in the morning and I haven’t had butt burn since. My stool is still kind of watery at times depending on what I eat. The feeling of having to go for the first few weeks was like, I would feel a bubbly sensation in my lower abdomen and then I compared it to it feeling like a balloon is being blown up (letting you know there’s stuff in there that can be emptied) and then it deflates again, like a contraction. When there is stool in there you’ll get a contraction or urge every 20-25 minutes or so, but you can hold it. At first, it’s good to go as soon as you feel the need, but over time it’s good to practice holding it a little so you’re j pouch can expand a bit. I’m just about five weeks out and that contracting feeling has started to fade a little, but I still know when I have to go due to the feeling in my lower abdomen. Any other questions feel free!
-Kyle
Hi Kyle,
Thanks for the response! Hopefully I’ll be able to do it, I have 17 days between takedown and return to school. When you say you don’t recommend it, was I’d that bad? I’ve been going to school for over four years with colitis. How does it compare to that? I just have a few more questions. First, do you find that your j pouch output times match the ileostomy output times? My ileostomy is pretty quiet during the day, so will the jpouch be the same? Have you tried any high fiber foods or vegetables yet? Also, did the calmoseptine work well? Do you apply it often? Also, how much gas do you get? Can you pass it? My bag expands a bit at night, just wondering if that will be a problem. Finally, how’s your sleep quality/night continence? Sorry for all the questions, I’m just trying to prepare! Thanks!
Hi Kyle,
This is my first time on this website and found it very helpful. I have had UC for about 17 years and while I responded to medication well my doctor found dysplasia (pre-cancerous cells) during my colonoscopy about 2 wks ago. Recommendation is colon surgery with j pouch.
The reason I am reaching out to you is I live in Rhode Island. I was wondering ( if you don’t mind sharing) who was your surgeon and what hospital did you have the procedure? It sounds like you had a rather good experience ( except for a little challenge with the take down). If you would like to talk offline, I can give you my email address. Any of your advice would really ease my nerves and help with my decision.
Thank you and I am so glad you are doing well.
Michelle
Hey Kyle,
I just had semi-emergency surgery for UC a little over 2 weeks ago, so right now I’ve got an ileostomy with the bag, but can have the J-Pouch done in the future if I choose to. I’m a 29 year old male, diagnosed in January 2012, but had symptoms of UC since March 2011.
Best wishes to you in the future.