20 Year Old with UC, Getting J Pouch this Winter, Any Insight?

Introduction:

My name is Kyle and I’m 20 years old. I was diagnosed with ulcerative colitis in early 2010 when I was a senior in high school. I’m a tall, athletic guy who loves to play baseball, racquetball and lift weights. I also enjoy basically any nintendo game, going out to eat with my friends and watching the Red Sox, patriots and Celtics.

My Current Symptoms:

Currently I have moderate symptoms- going to the bathroom around 4-6 times a day, lots of gas and a little discomfort, but no blood as of now. My symptoms and their severity are a result directly due to how much prednisone I am on at the time, which currently is 15 mg.

Getting a J-Pouch

Diagnosed at age 18 in 2010. It all started when I had consumed a large amount of alcohol. The next few days after I began seeing blood in my stool and eventually that’s all there was. The pain in my abdomen was so immense I thought I was going to die, or at least have an alien bust through me like in the movies.

After seeing my physician, I was referred to a GI doctor who set up a colonoscopy appointment for me. I had to wait a few days before I could go in and boy those were the worst days of my life. Blood was coming out like a faucet and the pain was unimaginable. I honestly do not know how I didn’t end up in the hospital. But I made it to the appointment, where my doctor concluded that I had sever ulcerative colitis of my entire colon and that he would put me on 40 mg prednisone and 2 cort enemas a days.

The prednisone provided instant relief and I managed to reach remission in time for baseball season and I was still able to close out my senior year as one of the top hitters in the state, but that achievement was bittersweet as my colitis flared again and again as the year went on. I attended the University of Rhode Island my freshman year, still waning off prednisone only to get down to 5 mg and then flare up again. Not being able to party with my friends and live life the way a normal college kid should, I transferred to Rhode Island College so that I could commute to school and also be able to reach my doctors much easier.

Since then, I have been on numerous courses of prednisone, imuran did not work, asacol did not work, mesalamine did not work and neither is remicade. Prednisone has been the only medication to provide relief. Over this past Summer I saw another GI doctor in Boston for a second opinion. His results were the same, however my doctor in Providence became frustrated and dropped me as a patient, so I am now seeing a different doctor but from that same group. He has been great, but unfortunately after my last sigmoidoscopy he has highly recommended surgery for me. I believe I can handle anything, if that is one positive thing I have taken from getting UC. But surgery was something I really wanted to avoid. I have accepted that I will have it now, and am relieved that I will hopefully be cured.

UC has changed my life in the sense that I know where many more bathrooms are than what I normally would have, haha. I do not go out as much as I would like and I am very hesitant about dating again (I haven’t had a steady girlfriend since my diagnosis). I know that I cannot drink alcohol, not that it matters anyway because I am still underage. I don’t really mind doctors looking at my butt. I know that it’s their job and they were trained to do it. They look at dozens of butts each day, so I am in no way uncomfortable. I feel that I have handled my UC very well for the past 3 years and my only concern now is that when I have surgery, I really do not want to have to take any official time off from school. I am eager to start my life independently and begin my career in medical imaging, move out and begin dating again with the same confidence I once had.

Colitis Medications:

Prednisone has worked the absolute best for me. But I have also taken:

-imuran
-asacol HD
-hydrocortisone enemas
-mesalamine enemas
-and currently taking remicade, but will discontinue after surgery.

supplements- occasionally a whey protein shake if my bowels are ok that day, 600 mg calcium, vitamin C

written by Kyle Thomas

submitted in the colitis venting area

Tags: j-pouch





16 Responses to “20 Year Old with UC, Getting J Pouch this Winter, Any Insight?”

  1. AdamNovember 15, 2012 at 8:53 am #

    Hey Kyle,

    Thanks so much for sharing your story. I’m sure you’re ready for a major change, and the chance to get back to living your early twenties how you want, without medical things trying to take over.

    Keep your positive thinking, no matter what, that’s going to get you where you want to be, I swear from everyone I’ve met with UC, those who can keep a positive spirit through the tuff time and those who can continue to go after personal goals, those peeps are the ones who make it happen.

    One tip, take a look at the Surgery Survey, where over 20 UC patients participated who have already had UC surgery. The link is right here: http://www.ihaveuc.com/26-colitis-surgery-patients-survey-results/

    And, you also might want to take a look at the UC and relationships survey answers, there’s some ideas that just might help you get back into the dating/relationships game, lots of ideas from other UC’ers about how they’ve handled this situation, and you might get inspired to get back in the mix with that. here’s that link: http://www.ihaveuc.com/50-person-relationships-and-uc-survery/

    Wishing you the best,

    -Adam

    • KyleNovember 15, 2012 at 11:38 am #

      Adam,

      Once again thanks so much for your advice and for providing me with an excellent resource to help vent and express my feelings about UC. I’m eager to check out the links you provided and I’m sure they’ll help a ton when I’m out of surgery and ready to get back on the horse and meet some new women!

      -Kyle

  2. Baker
    BakerNovember 15, 2012 at 11:18 am #

    Kyle,

    I’m 5 weeks out today from my first (of two) j-pouch surgeries. I’m due to post a very lengthy and detailed post on my experience, the good, the bad, and the ugly. I found it extremely helpful to read the stories posted by Blake, Curtis, and others. I hope my posts will eventually be as helpful as well. I like you was (and will be again) very active. That’s honestly been one of my biggest challenges with the surgery, I had expectations of a much speedier recovery and when things were going much slower than expected and I had complications I was getting pretty upset and depressed. And while recovery can be hard I found the lack of staying busy and active almost as hard. I would also say be careful about what you read online, there is a lot of horror stories but I beleive it’s because most of the people that have very positive outcomes are out living there lives like normal. You’re young and fit and should recover well and return to life as normal. Do your research, find a good surgeon, and set your expectations realistically and conservatively. A lot of my frustration was due to my overly high expectations, it’s a big surgery, there are many common complications, and it just takes a lot of time for recovery and adjustment, much of which you have little to no control over as you’ll read in my upcoming post.

    -Baker

    • KyleNovember 15, 2012 at 11:35 am #

      Baker,

      Thanks so much for the reply. Like you said, a speedy recovery is ideal, especially for people who love to exercise and are used to being in shape, despite UC. Even though the thoughts of surgery and what it will be like keep me up at night until the early morning, I am becoming more and more positive about the process. Even over the course of the last 3 years i have remained psotitve through numerous public accidents and very hard physical and emotional times, so I believe having UC has helped prepare me to beat UC by surgery. The hardest part for me will be not being able to lift weights, and depending on the time of the surgery, enjoy my birthday in january. I will most definitely stay up to date with your posts and good luck with your recovery as well as your take-down surgery.

      Best regards,

      Kyle

  3. umaNovember 16, 2012 at 1:15 am #

    Have you tried probiotics at all. They help in putting this Uc into remmission. It has helped many of us here, so may be you

    should give it a shot. Garden of life Primal defense is the probiotic which has helped me. I now have no symptom at all for the past 2

    and a half year. I have almost forgotten what it is to have colitis. In fact my colitis is 22years old. But now in total remission.

  4. sharaleeNovember 16, 2012 at 10:41 am #

    I had my colon removed on march 4th this year. I was off work for 9 weeks. I teach preschoolers andI find my life so much better since my operation. I am active with my classroom as well as raising a 3 year old. I am on a two year waiting list for a j pouch. Where i live in nova scotia canada there is only two surgeons who specialize in the j pouch. I am presently using cort enimas because i still have a foot of my bowels that is still in me til i get the j pouch. I have the ileostomy and for the most partit doesnt bother me. Unless i have bags breaking which happened a bit when i gained weight. I was 100 lbs when sick and am now back up to 170. I met a new man in my life and july and my bag has never bothered him and i did quite a bit of dating two months after my surgery. Everyone is very understanding and accepting. It has been a very positive change in my life and i very rarely remember what its like being sick. I sometimes suffer from survivors guilt when i read how sick others still are and i feel so well. I wish you luck and if they are saying its time and you are ready go for it.

  5. KNovember 17, 2012 at 6:15 pm #

    Almost 40 years separate our uc experiences, but I still consider my surgery (an ileostomy)a miracle. No uc, no meds. As you move forward, Kyle, I wish the same good results for you.

  6. ChrisNovember 18, 2012 at 12:52 pm #

    Kyle –

    I reccommend reading Blake and Baker’s stories. Baker’s really helped me get to the operating room for my j-pouch surgery (a week after his – post-op four weeks for me). Side note – glad to see your comment Baker; I’ve been waiting for your next post.

    Anyway, Kyle, I too am active. Bootcamp three times a week plus a gym session once or twice a week. Plus a 3 and 5 year old. But, as my fantastic wife reminded me, short term pain long term gain. In the grand scheme of things, taking a few months “off” (or just at a slower pace) is nothing.

    I decided to have surgery for two reasons 1. I try to be healthy in all that I do, and yet I was putting harmful chemicals in my body (prednisone 30 mg and Remicade – all other RX did not work). 2. Prednisone and Remicade stopped working.

    Although I have had one complication (a blockage) I wish I had the surgery a year and a half ago, instead of starting Remicade.

    Surgery is a tough decision. One my wife scheduled for me, because I was going to “think about it” – again. Waiting the two weeks for my surgery was long. I wish I had it a week sooner. If you elect to have surgery, ensure you have a good support system. You will need help at the hospital and at home during recovery. Like Baker, I had higher expectations for my recovery, but being acti e prior to surgery is making the whole recovery easier.

    Good luck.

    • KyleNovember 18, 2012 at 1:10 pm #

      Chris,

      After each comment I read I become more and more comfortable with the thought of surgery. It sounds like you lead a busy and active life much like mine (aside from the wife and kids). I am meeting with a surgeon tomorrow in fact, and we discuss everything. I am really hoping I can leave there with a scheduled surgery. The ideal time would be to have it around December 12th or 13th, in hopes that I will be able to be home for Christmas and still have enough time for recovery before school starts up again at the end of January. However, after reading posts like yours, I am much less upset about the fact that I will be out of the gym for a while. I have an excellent support system-great friends and a very loving family, so I am in no doubt going to have great care. I have learned to take care of myself and become more independent since my diagnosis, but I believe it will be good for me to be taken care of for a change. Thanks so much for your advice and i’ll be sure to keep everyone updated.

      -Kyle

  7. StephanieNovember 20, 2012 at 9:48 pm #

    Good luck, Kyle! I was 18 when I had my surgeries and I didn’t really have that much information about what to expect with everything. I was so embarrassed by what my body was doing, that I pushed people away hoping I would somehow get better on my own. Obviously, with this disease, that is not realistic during the worst of flare-ups!
    My first real ‘flare’ landed me in the hospital on Christmas Eve, at which time I needed a few blood transfusions and was severely dehydrated. As bad as I was, they recommended an emergency surgery with no guarantee that I could have the reversal Jpouch. That scared me to death! I was WAY too young to be going through this! So my parents and I decided on trying alternative medications at CHOP- a children’s hospital an hour away. After a two month hospital stay, I went home with the doctors telling me that I really should get the operation because as bad as I got- the next flare could be even worse.
    The hardest thing for me to do was to schedule that surgery when I was feeling ‘good’ knowing everything it entailed- but ultimately it was the best thing for me because my body was able to heal very fast. Six weeks later, I had the reversal surgery with the J pouch and am thankful for these miracles that doctors can perform!
    Keep your friends and family close- and keep your positive attitude! With that, you can conquer anything!

    • KyleNovember 24, 2012 at 1:25 pm #

      Stephanie,

      I am doing my best to stay positive. I know that I will get through this with the help of my family and friends and each day closer leading to the surgery I become more confident and I cannot wait to get better. As I like to say, people aren’t dealt cards they cannot handle. I wish you the best of health in your future and thanks so much for your comment and advice.

      -Kyle

  8. JasonNovember 24, 2012 at 5:42 pm #

    Kyle,

    I just had my first of two surgeries last Wednesday, November 14th. I am doing very well and feel great! They told me at the hospital I was getting the medal for fastest colorectal recovery. Haha! I attribute my fast recovery to my youth, I’m 31, and the fact that like you, I work out quite a bit. I think the other major part is attitude. You have to have a positive attitude going in to this. It makes it so much better. It is a huge decision and you just have to know that after it’s all done, you’re going to feel so much better. I was diagnosed back in January with mild proctitis, and within a few months I had full blown UC. I ended up in the hospital in June for four days to receive IV steroids because I had gotten so bad. Life was almost unbearable my symptoms were so bad. Going to the bathroom 20+ times a day, blood, and horrible urgency. After the steroids, I felt like I was reborn, I could not believe how great I felt, my symptoms were gone! They started me on Remicade and everything was great. Then within a month my symptoms started coming back. They doubled my dose of Remicade and it did nothing except give me a horrible reaction that made me feel the worst I ever have in my life. I ended up in the hospital again in October, and after my third colonoscopy, they said there was zero improvement from the last one back in June. I was done with this disease, the medications, all of it. I made the decision to go for the j pouch. I had already done a ton of research on it as I knew the meds weren’t doing anything so my decision was pretty easy. Anyway, enough of my blabbering. I wish you all the best with your surgery, I’m sure you will do fine. Just be prepared for quite a bit of pain for a while. I was in the hospital for five days and after I got home I was still hurting pretty bad. But now, just a few days later I feel really good. I’m hoping to have my takedown in beginning to middle of January. If you have any questions I would be happy to answer them. My e mail is JFreese727@aol.com. Good luck brother, you will do great! And when it’s all done, I’m sure we’ll both be better than ever!

    JASON

    • KyleNovember 25, 2012 at 9:25 pm #

      Hey Jason,

      It’s nice to know another younger guy who has had success! that makes me a little more hopeful that I may have a faster than average recovery time. Even so, I am prepared to take it easy for a while. Being steroid dependent I believe will be the only difficult part in my recovery, but I cannot wait to be off the prednisone since it has ruled my life for the past 3 years. I know that my first thought when I’m out will be when can I get back in the gym or go running or throw the football, but getting better the right way is top priority. I’m glad to hear that your recovery is going well and everything went okay. I have met with my surgeon and I believe my first surgery is scheduled for December 11th or 12th. I will be sure to keep this post updated through my journey and I look forward to hearing from your experience as well!

      Thanks a ton,

      Kyle

  9. KyleDecember 13, 2012 at 12:28 pm #

    Hi All,

    I just wanted to post an update on my story here. I am having my ileoanal reservoir surgery tomorrow, Dec. 14th at noon. The past month since I created this post has truly flown by, thanks to both my schoolwork and a little bit of anxiety. I am quite nervous, but knowing that so many others have found success in their journeys with surgery gives me much more confidence. I unfortunately had another accident last night after dinner, but I looked at it as a blessing because in the back of my mind I knew that it was in fact the last time that would happen to me and made me feel a little more assured about having the procedure. I will start my bowel prep at 4 o clock pm and then I’m sure everything else leading up to surgery will go by in the blink of an eye. To look back on my past 3 years of living with ulcerative colitis I have taken away many positives from my experience. I no longer make assumptions about people until I really know them, because I have learned that you never really know what goes on behind closed doors and what they have been through or continue to go through on a day to day basis. I have a much higher appreciation for doctors and medical staff who have a lot of pride in the care they give to people such as a myself, and while Crohn’s and colitis patients have it bad, there are always people who have it worse and I have learned to become thankful for everything that I have in my life and that I have been blessed with. There were many hard times while dealing with colitis. Countless accidents, worrying about where a bathroom is at all times, creating eating schedules according to your plans each day and of course, putting up with emotional and physical pain each day that your colon constantly makes you aware of. But, I believe I found a light at the end of the tunnel and after my operation tomorrow I think I will be that much closer to the end of this.

  10. Allie M
    AllieJanuary 10, 2013 at 11:45 am #

    Hi Kyle,

    I hope the surgery went well. Reading your story reminded me how lucky I am to be in remission and I hope now that the surgery has happened that you are feeling A LOT better. I also live in RI and know about the difficulties of having UC in high school. So much fun lol. Again thanks for writing about your story and experience and hope everything went well with the surgery!

    • KyleJanuary 10, 2013 at 10:32 pm #

      Allie,

      Thanks so much for the comment on my post. It’s nice to hear from another Rhode Islander! That’s fantastic that you’re in remission and I hope that your colitis stays that way for a long time. I’m 4 weeks out of surgery now and I’m just starting to get some more energy back and relying on the pain medication less so I’m going in the right direction. The first day after the operation I already felt better than when I did with UC and now I’m starting to physically and mentally feel like my old self again (prior to the diagnosis). Thanks again for the good luck and stay healthy!

      -Kyle

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