After suffering from Ulcerative Colitis for roughly 5 years, I reached a point where I had exhausted all available pharmaceutical options. My weight had continued to drop and my most recent stay at the hospital lasted over two weeks. My gastroenterologist suggested I pursue a J-Pouch surgery process as a last resort. 10 months and 3 surgeries later I now have an internal pouch that holds waste until I go to the bathroom. As a result of this radical surgery I am even healthier now than I was prior to being originally diagnosed. AMA.

EDIT: I'm signing off for Super Bowl festivities. Feel free to post any further questions and I'll check back later. Thanks for all the responses!!!!

Comments: 363 • Responses: 22  • Date: 

brokenpheonix159 karma

I just had 20 inches of my small bowel removed due to my Crohn's Disease. I'm laying here, wishing I had more pain medicine, and stumbled across your post on the front page. You've given me hope that maybe this surgery will take away some of the pain and I'll be able to live a normal, healthy life.

Thanks for your post! Sorry I don't have any questions for you. I have to go on a walk now!

draegs59 karma

Reading other people's stories helped me out a lot during my surgeries. Part of the reason why I decided to try a IAMA. Hope you have a quick and successful recovery!

YeOldeMiche39 karma

I'm a 17 year old guy with Crohn's Disease, I've had it for over half my life. I never had to have surgery, and it doesn't look like I will have to, and I want you to know that I appreciate you making this post. You're struggle with colitis is something I feel that I can sympathize with, and your strength is an inspiration to me. I went from a 64 pound fourth grader to a 175 pound 11th grader. I promise you that you can do anything you want with your life. What medicines did you use? What side effects did they have? How has your diagnosis and recovery changed your character?

draegs11 karma

My sister has Crohn's Disease to a similar extent that it sounds you do. It's always nice to meet others who can relate to "good days" and "bad days" so to speak.

I took Mesalamine from day one of being diagnosed with no side-effects. Eventually I moved onto Azathioprine and felt like I picked up colds a lot easier. Finally, I tried Infliximab but had no positive benefits. Along the way I took a ton of prednisone which eventually led to being diagnosed with osteoporosis (it rots your bones over time). As of today I am on Nexium and Fosamax. That's it.

EDIT: As to your last question, the whole experience has definitely changed my outlook on life. I don't let things stress me out as easily as they used to and I've become much more confident in who I am. I was luckily enough to find a wife who is open and understanding to all of it.

YeOldeMiche2 karma

I take a combination of pentasa and 6mp. Since I started the 6mp (middle school) I've been getting a lot more colds but luckily I've learned to power through them over the years. I take a lot of Sudafed and Tylenol to deal with it. The good days and bad days are definitely a part of my life. One last question: how does alcohol effect you?

draegs3 karma

I drink probably twice a week and really see no problems. I tend to avoid beer, however, as it gives me gas.

DarkObserver0 karma

I know a few people with chrons and they tried the specific carbs diet (SCD Diet) and have had really good results. I'd recommend it.

draegs1 karma

I tried the SCD diet for about a month but saw no changes in my condition.

Funguss33 karma

Have any good semi-colon jokes?

draegs18 karma

I wish!!! I'm always up for a good pun.

DragonPup14 karma

I had my large removed just over 12 years ago from Ulcerative Colitis, too. Where did you have your operation done?

draegs7 karma

Cleveland Clinic. You?

DragonPup8 karma

Beth Isreal in Boston. I was literally diagnosed only 4 or so months before my operation, so I'll let you imagine how bad that first flare up was. (IIRC, I needed over 15 units of blood over the course of 3 hospital stays, not counting what the surgery used)

draegs5 karma

I can sort of imagine...although going from healthy to that sick so quickly would be very, very tough to deal with. Mine was a slow progression for the most part. Never had to have blood. So do you have a colostomy now?

karmapillar12 karma


draegs16 karma

I can provide photos showing my stomach area after my first surgery and two years after my last surgery (warning slightly graphic):

Bayleafqween4 karma

What is the red thing poking out of your stomach?

Glaurunga12 karma

Quite certain that's his intestine. The bag would fit over that.

draegs12 karma

Correct. That's what's called a "loop ileostomy" that I wore a bag over during the surgery process.

ichuckle4 karma

how long did you a an ostomy bag? I'm in nursing school right now and we had to wear an ostomy bag for 24 hours. I don't know how people do it! It was so damn itchy

draegs8 karma

I had an end ileostomy for 6 months after the first surgery. I then had a loop ileostomy for 3 months between surgeries 2 and 3.

I found Hollister brand supplies to be the most comfortable to wear. Most companies will send free supplies to try if you call them.

Roxosaurus12 karma

I had this exact surgery. After they created my pouch I had to wait three months for the reattachment surgery. In the meantime, I named my stoma Pierre, we got along famously. I guess it was sort of a coping mechanism. Dunno why he was french...or a he... >_>

Did you name your stoma? And do you find, at times, that you still have nightmares of exploding ostomy bags?

draegs4 karma

I named mine "Stomie" (I know...not very original). I don't have nightmares about exploding bags (luckily only had two major blowouts), but I do dream about needing to empty mine and not being able to find a bathroom.

STDizzle9 karma

Has your standard of living changed at all since the operation? That solution sounds extreme.

draegs15 karma

Yes and no. Life certainly isn't the same as it was prior to being diagnosed, but once you have lived a certain way long enough that becomes what you see as "normal." I now make 7-8 bathroom trips each day. Many of which are in public places, but I choose where and when I want to go. When sick with Ulcerative Colitis I sometimes had 1-2 minutes to find a bathroom when I had the urge to go. I now have very few (self-imposed) dietary restrictions, whereas when I was sick I could only eat a handful of foods.

kellir786 karma

My husband has severe UC and nothing has worked for him. Pretty sure we're headed in this direction too. Can you describe what the recovery from surgery was like? How long were you off work for each and how far apart were the surgeries? So glad you are doing better. I hope my husband feels better some day too.

katrionatronica10 karma

I'll throw my jpouch story in here too.

My first surgery, to remove my colon, was an emergency cos I got toxic megacolon. It took me two months to recover. This was the hardest one, because I was seriously ill at the time of surgery - planned surgery is easier. My second surgery was to build the jpouch, which was also a two-month recovery. The final surgery was reconnecting my intestines, this was a 6 week recovery because I had complications but it can be as little as 4 weeks. I had a stoma all the way from the first op to the last one. I had a year long gap between ops 1 and 2 because of other complications, usually it's about 3-6 months, and 3 months between ops 2 and 3.

If the surgery is planned, they will do the first two in the same procedure. I couldn't have both at the same time because I was too ill and my pouch might not have healed properly.

It gave me my life back. If UC is really ruining your life - if it's at the point where you can't get out or you can't work - then getting your health back with a jpouch is amazing.

draegs4 karma

My experience was pretty similar. First surgery was not emergency but still pretty bad. I healed for 6 months before pouch construction and 3 more months before reconnection. Glad yours was a success as well.

Blugpuff26 karma

Do you have certain dietary restrictions? Are there any foods that you can't have anymore that you miss?

draegs11 karma

Some foods pass through me faster than others (eg lettuce and eggs). I usually choose meals based on what my post-meal activities are going to be. The only food group I usually avoid are beans. I tend to have looser bowel movements and gas does not work well with this setup.

DragonPup3 karma

gas does not work well with this setup

I've always wondered if the difficulty in passing gas was normal with a j-pouch, or just a me thing.

draegs9 karma

That difficulty is very normal as far as I can tell. My wife laughs at me if I actually fart because it's such a rare thing.

Clovyn5 karma

I was diagnosed with UC last tuesday. It feels like the quality of my life has plummeted: mostly from the internal pain/inability to eat anything.

When healthier, do you mean you aren't fatigues? Able to eat (variety) again? Not dependent on medicine?

If so, I may consider this operation for the future.

draegs7 karma

Healthy means I have very little fatigue, no longer look at food as a necessary evil, and don't suffer from depression. I do have to drink lots of fluids to stay hydrated, but that's as easy as keeping a water bottle around. As I said above, once you live an altered style of life long enough it becomes your new normal. I'm very happy with what healthy means to me now.

ImMakinTrees4 karma

Will you have the j-pouch the rest of your life, or will/can they eventually resection everything? I am on Humira now which isn't working, and my GI is talking about surgery. What meds did you try before you resorted to surgery? Thanks for doing this.

draegs5 karma

I'll be like this for the rest of my life. There's a chance the j-pouch could fail at some point and I'll have to go back to an ileostomy. That's the risk I had to accept. They've only been performing this surgery for about 30 years and there aren't many long-term cases to gather data from. I've met lots of people 10+ years out from surgery who are living great lives. I have no regrets.

ScrapBuilder7744 karma

It holds waste until you go to the bathroom? Could you elaborate on that?

draegs7 karma

My internal pouch slowly fills with waste as it passes through my small intestine. Eventually it fills up and I get an urge to go to the bathroom not too different from what you feel in your colon (that sort of "push" feeling). I can hold it for an hour or more if need be, but it does become more uncomfortable the longer I wait.

mattverso2 karma

I've found I can mostly keep the worst symptoms of my UC in check by smoking huge quantities of marijuana in addition to my prescribed medications. So far, so güt.

Did you ever try MMJ for UC?

draegs2 karma

I used MMJ at times to stimulate my appetite. It's hard to motivate yourself to eat when you know it's going to cause pain.

lickmygiggle2 karma

Fellow jpoucher here. Had mine done in 2003 in one step with a diagnosis of Ulcerative Colitis.

Three years later I was rediagnosed with Crohn's disease.

Do you have any issues with bile? It took years for mine to get to a point where going to the bathroom wasn't miserable.

draegs2 karma

My bile/gallbladder was fine until last November. Then I passed my first gallstone. An ultrasound showed my gallbladder full of stones and the doc suggested I have mine removed. I had a cholecystectomy in December. So far so good since then.

My surgeon warned me of possible gallbladder failure before my first surgery. Apparently they aren't that uncommon for those who've had a total colectomy.

Viper3D2 karma

Does your poop look different?

draegs6 karma

It's usually pretty soft. Think somewhere between apple sauce and soft serve ice cream.

Dragout-3 karma

You ever read Guts? By Chuck Palanuik?

draegs1 karma

Never read it; I'll have to check it out.