I am a 21 yo male who have been suffering from extreme UC issues for the last 3 years. My whole life have been flipped 180 degrees and I am have been extremely depressed/suicidal due to my life situation. I am in the process of having a j-pouch now, but I am so scared that I have just damaged my body permanently or that this won’t be the miracle I desperately need. I was looking for some success stories of people who are now able to be physically active and stuff like that. Or any optimistic input. I am just so tired of this whole thing and feel so incredibly done of living a life of so low quality. I don’t see the point of this and I have tried so many things. I am just too tired lf this shit.
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@Fredz This is often a tough hill to climb. While you’re waiting for this week’s crop of success stories, I suggest you use the search function on this site to find the many that have been posted here over the years. Just search for the word “success” and your likely to turn up a bunch. Most folks here at any given time are looking for support, so only a small fraction of the J-pouch successes will ever see your post, but many folks with success stories came here for support along the way.
I was sick for a long time before my surgery. The J-pouch enabled me to study a martial art with my daughter (I eventually became an instructor) and to scuba dive. Sometimes it’s the little things - I now prefer a window seat on an airplane, because I no longer care about quick access to the bathroom.
Good luck - keep your eyes on the prize.
Better to talk about it, you're already going in the right direction.
I just finished my squat and deadlift workout. I can run 10 miles, though I do have to stop and poo sometimes. I scuba dive too. And ski. I learned to play golf last summer. Yes, you can be active.
When I'm feeling sorry for myself I'm still amazingly better than when I was sick with UC and a falling apart colon.
I have had my J-pouch for 6 years going 7 years in October. I have never had pouchitis once. I have 14-20mbs a day but I am happy and I would not change a thing. I take no medicine and I live a full life.
I got my J-pouch at 22 and I am now 28.
Workout tips: If you have shows recorded on your DVR, try working out in front of the tv to catch up on some shows. I like to workout while I am watching tv, that keeps me motivated lol. Putting on dance music and dancing to that works too. Try to put your workouts at 30minutes but no more than 1hr, extensive exercise can cause potential damage. 30minutes- 1hr exercise sessions. Riding a bike is good too or just walking in general.
Eating and drinking: Drink water: before, during, and after every meal; I find that keeps things moving pretty good too. Oatmeal helps keep me cleared out too and move things along, try oatmeal ANd Greek Yogurt is heaven for us!
I had my takedown surgery 2 days before Thanksgiving of 2020. I am roughly 4 months out and I feel great! I'm in the gym 4 to 5 days a week. I lift weights, bike, jog, or anything else I want with no issues. 2 weeks ago I started coaching wrestling again. It's definitely not the same as having a healthy colon but I have no real complaints. This morning I went to the gym where I lifted weights, did eliptical machine, ran 2 miles on the treadmill. Then after I cleaned up I went bowling for 2 hours all with no issues. I can only speak for myself but so far I'm very pleased with my jpouch. It forces me to eat a clean diet and stay away from garbage but is that really a bad thing?
I've had my pouch for 4 years and it has been a complete success. I'm active and can eat whatever I want. My life is almost exactly the same as it was with a healthy colon.
It's definitely a "shock" to your normal healthy lifestyle. My colon was removed in emergency surgery @ age 49. Since then, I have had 2 pulmonary embolisms, congestive heart failure, 3 stents, and nearly lost my right leg in a car accident (now held together by pins and plates).
Today, I have 2 new grandchildren, work a 30 hr per week, travel, walk up to 3 miles per day, foster senior rescue dogs, and enjoy gardening and DIY home improvements.
That which doesn't kill you makes you stronger and I wear everyone of my medical calamities as a badge of honor.
Hi, I had my j-pouch in 1992, and yesterday a good friend reminded me how sick I was back then. I couldn't make it to her wedding I was so sick but my parents went along to the reception instead!
She said it's amazing how well I've been now-a-days. And yes, I'm studying my PhD full-time and working in a casual job. I exercise and socialise and enjoy life to the full!
Hang in there! The surgery changed me from a young person who didn't have the energy to work and volunteered only 1 hour/ week to someone who has been able to work full time and study over the years and enjoy life!
I hope this wonderful procedure gives you relief from that horrible disease. I know some people have different results, but 40 years ago I was you. Early in my sophomore year, I started having symptoms of what I learned was UC when the symptoms got very bad. If I maxed out on prednisone, I had an almost tolerable existence, but the minute they tapered me back to less than 25mg per day, I would end up in the Hospital. By Fall of my 3rd year it was bad enough that I could not complete a whole semester without winding up in the Hospital for 2-3 weeks, forcing me to resign from school. I got so tired of being sick, I refused to get help one time; my room-mates had to drag me to the hospital. I had been living for a week in the Powder Room on the ground floor of our town-house. Literally. I was on the toilet and throwing-up every 20-30 minutes, 24 hours a day. I got a blanket and slept on the floor between the toilet and the sink so I would not have to walk far when I had to go again. As you probably have experienced, if you cannot keep anything in your stomach, then you cannot take the meds that make you (temporarily) better. I left the Hospital that time at 116 pounds which does not look very good when you are 6 foot 2 inches. The Doctor that cared for me in the Hospital said that had my roommates not forced me to come in, the weigh-loss and dehydration might have been so bad that recovery might not have been possible. My parents rented a mobile home so they could drive me 6 hours in a vehicle that had a toilet inside. I had to resign from school that spring. I tried again in the fall. I got smarter about the meds, and knew when to up the dosage before I wound up in the Hospital, but I got sick over Thanksgiving and still could not go back to school to finish the semester. I finally got fed up (like you seem to be) and I pressured my Doctors to do a K-Pouch. I figured out that would not be very sexy, but neither is living in a bathroom for 96 hours. My Doctors did not know how to do the K-Pouch, but they recently read an article about the j-pouch and we went for that. I was 22, going on 23, and was only a sophomore because I kept getting sick. I figured that even if I could tolerate high doses of prednisone, there was a high risk of cancer or an emergency surgery. I decided that then was the best time to have the surgery, when I could pick the place, the time, and I could recover without fear of loosing a job or something. I can tell you that simply removing my colon and leaving me with an ileostomy was the best I felt in 3 years. After they removed the colon, and allowed me to eat, I was gaining 2-3 pounds a week. I was able to jog, lift weights, walk my dog, go out dancing with my friends. I could go to a concert and not worry about what might happen when I rushed to the bathroom only to find out someone else had passed out in there leaving the door locked. I saw, and still see, j-pouch surgery as a miracle. My first surgery was 38 years ago this April, and I not only never regretted the decision, I wish I had done it 2 years earlier (except I dont think the procedure existed in 1981). I think you will be amazed at how fast you will heal at your age. I was able to attend a 4th of July party at The White House about a week after the 2nd surgery. They kept me in the Hospital for a full week after the surgery, letting me go home on a Saturday morning. The 4th was that Monday. I had an ileostomy at the time, and was wearing shorts and playing volleyball on the White House Lawn, and no one but my friend who worked there knew I was in the Hospital a week before. Google some pictures from 1983 and see what Men's shorts looked like then. After you are done laughing, realize that getting rid of my sick Colon two months earlier made we well enough to do that, and as bad as you might think it would be to have an ostomy-bag, I was able to drink beer and eat BBQ at an outdoor party without anyone knowing. People will ask me what I am unable to do with this surgery that I could do before I was sick; really the only thing is deep-woods backpacking because I am still going to the bathroom more times per day than I would find enjoyable to do in the woods. To be fair, I was not able to back-pack with UC either, so its not really an accurate thing, but it gives you an idea of realistic limitations. I was able to graduate College like the rest of my friends (made some new ones too since I was there longer than most). I got a job, traveled the world, got married, had kids, got to enjoy boating, and the beach and other activities that are not within 50 feet of a bathroom. Spending 4 hours on a Sunday afternoon playing Volleyball at an outdoor sand court, with no restroom, and no porta-potty and never missing a game was like heaven.
It was life-changing for me. I hope it will be for you also.
Ken