Hello all..I had my first surgery in April of last year and had my take down in December. The 8 month stretch with a colostomy bag had me insecure with myself and depressed. Now that I had the surgery I and blessed to be without the bag but just wish I could be back to my normal 100% self. I wish I would have tried the medicine they offered first. But the doctors said my large intestine was pretty much no good. I feel blessed to not have UC no more, but the bathroom trips can be overwhelming. It's hard to have these conversations with people who do not understand what i go through...The waking up in the middle of the night throws my whole sleep pattern off. I'm tired all day and moody during the day. I have PTSD from being shot from an attempted robbery 6 years ago and adding this im emotionally drained. My wife she don't understand i try i tell her but its like I can't express how I'm feeling so I come here from time to time and read posts and it ease the stress sometimes because there are people here who are like me and understand...Im sorry for venting this is draining me..(deep breath)..thanks for reading going to sleep now to wake up at 3am smh this sucks
It’s tough, especially initially. I had a single stage surgery four years ago, so I went from having an extremely poorly functioning colon to waking up with a J-pouch all in one step. I get the impression that the recovery from this method is more intense, but at least it’s over and done with much more quickly.
In my case, I was released from the hospital 5 days after my surgery, only to be rushed back to the hospital by ambulance 12 hours later with a nearly ruptured stomach. My small intestine had not “woken back up” yet, so it was backing up into my stomach. I spent two more weeks in the hospital, 9 days of which I had a tube up my nose and into my stomach, with no food nor water allowed. Fun!
Honestly, the first year with a J-pouch was horrible. I was taking 16 pills a day just to keep from camping out in the bathroom. And I was sleep-deprived, much like you describe.
But, after that first year, it was almost like flipping a switch. I believe that my body adjusted. But more importantly, I think that I learned a number of habits and tricks that make my pouch function much better for me, and it has made a world of difference. I sleep through the night almost always (wake up, maybe, 1-2 nights a month) and I take NO medicine for my gut (or what’s left of it).
I learned many of those practices from reading on this forum, or from researching reputable medical sites. But it seems like everyone’s experience is a little different, and what works for me may not be what works for you. Still, I would be glad to share my experiences.
I see from your profile that you are in Durham. Is that UK? Or North Carolina?
@BillL I am in Durham NC..I know about the good ole NG tubes had the same issue for both of surgeries..not fun at all...I would like to hear your experiences so I can try to use some in my daily routine and see what works. I know its only been 5 months since my take down surgery but I am ready for some type of normal. I wish I could sleep through the night that would be nice I was up again this morning at 3:33am which is outside of my 3am on the dot mornings. I do see on here where people say the first year is rough 😔. I just wish they would find a cure so the people after us don't have to go through this. Thanks again BillL
Well hello, neighbor. I live right down the road from you, in the town of Wake Forest.
I am certainly not an expert on what it is like to live with a J-pouch, but I do know what has worked well for me.
The first thing that I found helpful was to pay close attention to what I ate. I find that I do much better if I limit the amount of bulk in my diet, and I eat fibrous vegetables very sparingly. I was never very good about eating my vegetables anyway, but now I have an excuse!
If the veggies are well cooked, I seem to do much better. I will also add spirulina to protein drinks, or throw some kale or spinach into the blender. Finely chopping everything up helps a lot. I also make sure to supplement my diet with vitamins to compensate for what I am not getting from food.
I am also very careful about when I eat. I prefer to not eat anything solid (and even liquid, usually) after 5pm, or 4pm is even better. My wife is not crazy about this, since she likes to cook a nice dinner, but I will often sit at the table, even if all I can do is just stare longingly at the food.
What made the biggest difference for me was my water intake, both how much and when I drink it. I make sure that I drink a minimum of 120 ounces a day. This might seem counterintuitive, since most of us have to deal with diarrhea, but it helped me considerably. First of all, I tend towards low blood pressure, and the water increases blood volume, and helps to prevent dehydration.
Each morning, I drink 48 ounces of water before I have any food. With nothing to slow it down, I can count on a bathroom trip within an hour, and I have the sensation that my pouch is thoroughly empty. I continue to rehydrate during the day, and I rarely have to revisit the bathroom (other than to empty my bladder) until late afternoon or evening. It has made a tremendous difference in how I feel during the day.
Case in point, my wife and I just hiked all weekend, and I was without bathroom access for most of the day. I was absolutely fine, and would not have dared to do that just a couple of years ago.
Obviously, you’ll want to follow your doctor’s advice on anything that you do. All I can do is talk about my own experience.
It does get better, as your body learns to deal with having a “stolen colon.”
Hang in there!
Yes you are right up the road..I do want to say thanks BillL..I am going to try some of these things and see how it goes..This is why I visit this site when I have these down moments..Its just good to know there are people like me out there..Have a good one and thanks again
You are very welcome. Please feel free to contact me anytime. In fact, if you send me a private message, I can give you my phone number so you can text me directly.
I sent you a Private message
I’m excited to hear that you two are in NC. I’m in Greensboro and do need an experienced j-pouch Doc. Do you see anyone in Wake Forest or Durham? Greensboro must be too small to have. Right now I’m on Cipro twice daily plus meds for other problems. Please let me know if you have docs you are happy with. Thanks. Olina
it’s good to hear that you are nearby. I had single stage surgery in 2016, so I am will have had my J- pouch for four years next month.
The doctor who performed my surgery was Dr Matthew Strouch. He is wonderful, and I highly recommend him. Dr Strouch has an office here in Wake Forest, but I believe he also sees patients somewhere in Raleigh. In fact I had my surgery at Rex Hospital, which would be a lot closer to Greensboro than Wake Forest is.
I also saw a gastroenterologist whom I like:
Dr Sachdeva - https://rmggastroenterology.com/
I hope you find someone you really like. Having a good doctor makes a big difference!
Thanks Bill for responding. I did send you a post but it must have disappeared. I had my colon removed in 2002 and iliostomyremoved In early 2003. Mayo Clinic did a three holer surgery I think they were experimenting on me Awful! I’ve had every problem and am now allergic to all uc meds I haved moved several times and have not had enough follow up care My great internal med Doc has been terrific and kept me going, but Indo need an experienced j-pounce doc for care and follow up I’ve asked my Doc to refer me to yours and am looking forward to some good help. Thanks Bill will let you know Olina
I had both of my surgeries at UNC Hospital. They did a great job with everything as that is a surgery that the specialize in there. I am overall pleased I must say. Just trying adjust to this new me. I am glad you got referred to BillLs doctor hope everything works out for you there.
Dear Walking....Will you also give me the names of your docs for back up in case my internist has questions? I feel so much better knowing you and Bill are close by. I thought I was the only j-pouches in the state. Thanks. Olina
Glad that you’ve got some good referral’s there, Olina. I have not seen any of the doctors at UNC, but they have a great reputation. My youngest did a medical internship there one summer a few years ago, and she was really impressed.
I think you have some good options around here!