Intro:
My name is Kyle Thomas, I’m 21 years young and I go to school at Rhode Island College, and I didn’t let UC beat me.
Some more about me:
I’m a radiology student in Rhode Island and I love sports, hanging out with my buddies, food and just having a good time. Did I mention food? I stay active by working out and I play the drums, guitar and piano in my down time. I’ve had UC for almost 4 years now, but living happily thanks to my IPAA (j-pouch) surgery last December.
Symptoms:
Currently no symptoms, just mild irritation of the j-pouch once in a while, which settles on its own or with a brief course of antibiotics. (flagyl or cipro)
Life After J-Pouch
My story began in 2010 when I was diagnosed with UC, but I’ve posted about that in past. My purpose of this entry is to let people thinking about having the j-pouch operation know that you can bounce back to your old self. Both my doctors and myself decided it was time for surgery last December and it was not easy. However my parents brought me up to have mental toughness, which proved to be successful at the end of it all. Now, almost a year later, I can honestly say that sometimes I forget I don’t even have a colon. I am back to doing my daily activities, going to school, working and loving life.
The best part of it all, is that the symptoms of urgency are gone. No more rushing to the bathroom, or embarrassing accidents at the least opportune of times. No more pain in my abdomen or bleeding during bowel movements.
I want other UC’ers out there to know that there is a positive outlook to surgery, and to be brave. I was scared, too. I was 20 years old and I felt like I was forced to grow up and become a man in order to handle it all. But in the end, it created life lessons that I will carry forever, and in turn will make you a better person. My thought process was that if I could handle the pain and agony of UC for almost 3 years, I can certainly handle this operation.
The hardest part of it all was the fear of the unknown. There’s no test course you can run through to see what life and your body will be like afterwards. And, there was no turning back. But, I wanted what was best for my body and at the time, my condition was so horrible that it needed to be done so I went for it.
I currently can eat almost anything I want. I still stay away from corn and seeds, as well as other foods not easily digested by even a normal GI tract. I also rarely drink alcohol in excess, because it can cause some irritation when going to the bathroom. I go between 4-8 times a day, but it depends on how much and what I eat. Those are average numbers, and at first they didn’t sound too appealing. But, when they are spread out every few hours, it’s really quite normal (especially after dealing with UC frequency).
So, to sum things up, I’m back to doing physical activity, lifting weights, playing club sports, working and going to school. Confidence in the dating field has risen tenfold as well. Good health plays such a big role in that department. Some advice to end on is to never give up hope. A strong person has a foundation built with the bricks “life” has thrown at them, and patients with IBD have some of the strongest foundations I’ve ever come across. If anyone out there needs advice or some input about potential surgery, feel free to shoot me an email at kyle_thomas1992@yahoo.com.
Medications:
Imodium (to thicken the stool)
written by Kyle
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,
Way way cool!
Super happy you are doing so well and keeping it real and living life the way you want to. We need more folks like you on this planet!
To a grand slam rest of the year migo,
-Adam
Adam,
Thanks again, again. You’re awesome for all the effort you’ve put into this site and I’m glad I have the opportunity to help others too.
ps: Love the baseball analogy. My life feels like a grand slam for sure
-Kyle
Kyle,
It’s so great to hear how well you are doing!! I have to thank you for sharing your journey with UC and Jpouch surgery. You inspired me and gave me strength to move forward with my own Jpouch surgery. At almost 40 years old, I thought, ” If this kid could do it, so can I!”.
I shared your story with my family and without your words of encouragement, I may not have been brave enough.
Now, 2 months with my J pouch, I have been doing ok, but still struggle with my healing at times. Wow, butt burn is serious stuff! :-) However, again with your words of encouragement, I know it will only get better from here!!
I can not begin to express how very thankful I am to you, Kyle. I wish you all the best in life!!
Stacy Shearer
Hi Stacy
Try using Calmoseptine for the butt burn if you aren’t already.
http://www.calmoseptineointment.com/
Stacy,
Your comment made my day! I’m so glad I could positively influence and that you are doing well! Yes, the first couple of months you will experience some horrible butt burn, but it increasingly gets better as your body adjusts. Calmoseptine works well and I used it for a while, but my surgeon prescribed me some silver sulfadiazine which is used on burn patients (serious, I know) and it took the butt burn right out of the equation. Best of luck to you and I hope to see more updates in the future!
-Kyle
Hi Kyle, thanks for your story, i love hearing about other people having the J-Pouch done, ive had mine for a year now and its amazing. according to me Doctor i have the Superman of all J-Pouches, already 2 weeks after my takedown i was down to 2-3 BMs a day, and its been staying there all the time, i also can eat anything i want without problems at all, corn, seeds, spicy food, alcohol. It happends sometimes i do get alittle butt burn but nothing Calmoseptine wont fix within 1 usage, i hope your story will encourage more people to get it done, because it is the only thing that can be done, too many people let UC control their lives.
Per,
That’s so awesome to hear how well you continue to do with your pouch. And you’re right, for people who medication doesn’t help, it is the best option at a new, healthy life. For me it was at least.
-Kyle
Hey Kyle,
Thanks for posting. Great to hear things are working out for you! I could not have read your comments at a better time. I’m a couple of weeks away from possible bowel surgery (have UC and now they think they have found early signs of rectal cancer) and the thought of being free from the urgency helps put a really positive spin on things. Thanks bud! Mike
Mike,
You must have a lot of anticipation! Positive thoughts will help create positive outcomes. Right before my surgery my last flex sigmoidoscopy showed lots of polyps which were showing signs of cancer as well, so I and now you made the right decision for your body. The lack of urgency is fantastic, the days of having accidents are LONG gone my friend. Good luck.
-Kyle
So sorry to hear this. Were you at all aware that you were having any signs of rectal cancer, or was it just a routine exam?
I hope it’s nothing at all.
Cheers and good thoughts Mike.
:)
Hey Bev. It was a random biopsy from a non-inflammed bit. They reckon they’ve caught it super early – no actual signs/symptoms. I know it probably sounds awful but I kind of hope I do need the surgery. This disease has held me back for too long and I’m tired of the fight.
I can understand feeling like that. I get so tired of having UC that if I were to have any sort of lower bowel or colon cancer, it would almost be a relief to get the thing taken out. Only we can know what it’s like to live with UC day in and day out…it is a struggle and a fight and it wears on you…
Good thoughts to you Mike :)
Thanks for posting mate
You got it man, hope it helps.
Fantastic Kyle.
Your journey will certainly help others who are undecided as to what to do.
All we UCers think about the surgery time and time again, after all! One never knows what is down the road.
Thank you,
Cheers, and a long and happy one my friend!!
Bev,
Thank you for your kind words of encouragement, they mean a lot! The purpose of this particular post was to give some first hand experience to life after surgery because I know it’s one of the biggest concerns people have going into it. Best of health to you and I wish you well!
-Kyle
For sure, Kyle! Having major surgery and removing a ‘body’ part is tremendously daunting!
We all need to hear of experiences like yours. There can be a great life again post removal!!
:)
So thankful to have jpouchers sharing stories. I had my take down surgery last December as well. Life is better but I am still longing for better results. I had to have my gallbladder removed at the same time which complicated things a bit but I get so little sleep at night getting up usually every one and a half to two hours for the restroom. Any encouragement and advice is appreciated.
Hey Sharon,
Keep fighting the good fight. Everyone is different and it can take up to 2 years even before things get signifcantly easier. I think my youth played a big role in my quicker healing, but even I get complications too. Imodium helps a ton if your pouch can handle it, and can help reduce night time bathroom trips. I went a lot during the night too for the first 4 or 5 months. I just recently started sleeping through night. My main advice to you is to 1. Try not to eat past 6 or 7pm. It’ll help a lot. 2. Incorporate stool thickening foods (I eat 2 bananas a day, pretzels, peanut butter, bread). It’s still important to monitor your diet. You’ll go through a lot of trial and error with your pouch as I’m sure you’ve experienced. 3. Don’t let it bring you down. Do what you can to make thngs easier for yourself, and try to stay positive that easier times will come.
If you have any other questions don’t hesitate,
Kyle
Thanks for checking in! Your a real inspiration
Hey Matt,
No problem! It makes me happy that I can influence others facing similar decisions.
-Kyle
Congrats Kyle and continued health. Great to hear your update and superb share!
Best, Shelly
Shelly,
Thanks so much! I’m feeling great in all aspects of the meaning. Best of health to you too and I’m glad I could share with you.
-Kyle
Kyle,
You are a true inspiration!! Keep up the hard work in school, you will be
successful in anything you do!! Thinking we should hang out after finals!!! :-D
Hey Spiv!
That means a lot to me man. We’ll definitely get together after finals it’s been too long.
Thank you for your encouragement Kyke, Your testimonial and advice are very helpful.Knowing someone out there is doing so well is a wonderful encouragment to me. Last week I doubled the Lomotil and can see improvement. I am taking six per day now along with a bile binding med that helps with not having a gallbladder. Diet is so important, I need to keep a food journal and monitor my results more carefully. If you can see a light at the end of the tunnel it gives you courage to keep pressing on and everything looks better if you are able to get some sleep :) Thank you for taking the time to respond!!! So happy you are doing so well. I am trusting and believing my improvements as I enter my second year will be tremendous!
It has been over a year since my takedown surgery. I take Metamucil 3X/Day. I’m not sure how common this is but I’m surprised that this isn’t discussed more. I’ve found that psyllium fiber is the most important part of my daily routine for stool thickening and the general health of my j-pouch. Talk to your doctor before starting this but I HIGHLY recommend it.