Finally getting around to typing something up. The surgery itself went well. My surgeon was able to remove the colon, and he said my small intestine looked healthy. The hospital stay itself was ok, but I was more than glad to get home (who wouldn't be?). I was in quite a bit of pain overall, mostly from the scars, but it's been gradually going away over the past week. I'm actually feeling good this weekend, and I'm expecting continued improvement daily as a result of my moving around more and expanding my diet slowly. I'm currently on a low fiber diet. The main foods I need to avoid right now are raw fruits and veggies, whole wheat, and multi-grain foods. It's not too bad. I've eaten a lot of chicken, fish, white rice. I've added in spices slowly, and so far, so good.

Having an ostomy bag isn't all that bad either. It definitely beats the pain I experienced from UC. I've had my doubts at times as to whether I made the right decision, but now I'm confident I did. Hopefully everything can go well for the next 2 procedures, and I can get my digestive system back to a somewhat normal state.

I wrote a little more detail in my blog (in my location, assuming this is ok to put there?) if you're interested in reading a little further. It's something I started a couple of weeks ago as a way to vent and hopefully educate others on my experiences. It's been very therapeutic so far, and I plan to continue it for a while. Going through a major surgery takes a mental toll, and I believe it's necessary to have an outlet of some sort. I'm fortunate enough to have more than one outlet.

Good God, my legs are weak. A couple nights ago, I noticed my legs shaking a bit while going down the stairs, and today they shook as I was getting up from sitting on a swing. Tomorrow's goal is to get some light leg work in. I'm not sure exactly how much I can do. I'm not supposed to lift anything heavier than a gallon of milk for 6 weeks (guess we'll see if that's still true next week at my follow-up). But I think I should be able to do some of the following:

Walking laps up and down my driveway
Quad sets
Slow body weight squats (pain free)
Maybe some straight leg raises

I'm just going to put my rehab skills to use and pretend I'm rehabbing an athlete with a knee injury and go from there.

Being in the house most of the day is making me restless. Not much is stopping me from getting out; I'm not on pain pills anymore. I'm just waiting to get my beige ostomy bags in (Thursday is the scheduled delivery date). I currently only have clear ones, and those aren't pleasant to look at for someone else, even though it'd be hidden under my clothes. I'd just rather not take any chances. My goals for Thursday is to get a hair cut and shave and get back to playing poker in Nola.

You still doing well? Been a while without an update...

Yes, I hope things are going well.

Perhaps you would be interested to know that the best Scottish footballer (soccer player!) of his generation has ulcerative colitis:

http://www.bbc.co.uk/sport/0/football/24721071

Hey, sorry for the lack of updates. I've been doing well overall, and I've gotten back into the grind of poker. It feels great to not have to get up randomly because of any urgency issues, especially when the game is good. Now, I can choose when I get up for the bathroom, and it's just to empty my ostomy bag, which isn't as bad as I thought it could be in a public restroom. It feels nice to be back grinding, especially mentally. Much better than sitting at home not doing a whole lot.

I'm moving around a lot more, and a large majority of my soreness is gone at this point. I do seem to have developed a slight yeast infection on my skin where the ostomy bag seals, I'm assuming from possible moisture that may get under the seal. I have my follow-up appointment tomorrow morning, and the ostomy nurse said she would take a closer look at it then.

Pretty awesome article on Darren Fletcher. Gives me some confidence that things could be great for me in the next year, physically speaking. I'll keep the updates coming a bit more often; I've just been lazy. It's therapeutic for me to write this stuff out, too.

Happy to hear you're getting things back on track.

I always think its good when the threads I read by people with UC go a while without updates. No news is typically good news. Remission is "boring" to discuss.

Haha, yeah it can be. It's just been good to get moving around and whatnot. Btw, how's your journey with Humira going so far?

My follow-up appointment yesterday went well. The ostomy nurse did a change of my seal and bag for me so that she could confirm my stoma is doing well, which it is. Doc said I look good for someone who recently had this surgery. I only lost 2 lbs since the surgery, which is real good. I've been eating as much and as healthy as possible. No need to be overly concerned with calories at this point. I go back in a month, and then after that, it'll be 3-4 months most likely. At that point, we'll plan out a date for the next surgery.

The next surgery will consist of removing my rectum, creating the j-pouch, connecting everything, and creating a new stoma (I think a little higher up). Then, about 3 months later, I'll have the final (hopefully) surgery where everything will be connected and back to "normal". I've been reading quite a bit on healingwell about others who have been through the takedown, and it seems the main thing here is patience. It takes a while for the body to adapt to a new digestive system, which can be frustrating at first, but I'm ready for the challenge when that time comes around.

I made it out to the Pelicans season opener last night with some friends. It was my first time wearing something besides basketball shorts or jogging pants since I've gotten the ostomy bag. Wasn't bad at all. I had no issues bringing my extra supplies into the Arena, and it wasn't very uncomfortable. The more I go out in public, the more comfortable I feel with the bag. I plan to write another blog entry sometime soon just to get some recent thoughts down and out of my head. Everything is going well so far. Let's hope it stays that way!

Things still going well?

I've survived loading Humira and I'll start tapering down my steroids tomorrow. At 10mg now and I'd say I'm seeing no symptoms except a little urgency. Really hope this works as the shots don't bother me and taking meds just once every 2 weeks would be clutch.

hey Jay,

followed your posts from the harrahs nola thread. Great to hear that things are going well with your surgery and recovery. I'm in and out of nola and would enjoy hearing about how things are going healthwise + the current state of the games. shoot me a pm if you want to grab a drink sometime.

That's awesome. I'm sure you're pretty pumped about not seeing any symptoms. I remember when I started finally noticing a difference on my way back to full health and it was a huge boost mentally to finally have hope that it was actually possible to live normally again.

Hope things continue to go well for you.

That's awesome news man, and I'm really glad to hear that. It's pretty huge that you're having very little symptoms while tapering down that low. I could never get below 20-30mg before my symptoms would return, even while on Humira.

For sure, I'll send you a PM in a bit. I appreciate the kind words.

You're definitely right about the mentality. Once you start seeing a drop in symptoms, it's huge for your confidence. It was just so up and down for me with the constant tapering of the prednisone and my symptoms returning. Real glad it's working for Spenda.

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Things have been going well for me so far. I'm back in the groove as far as poker is concerned. Not having many issues, if any, with the ostomy bag. My soreness is relatively gone. So far, so good. I'm looking forward to the next step of the process. I'm hoping to get a bit more active soon once I can start some light exercise comfortably.

How are you getting on OP?

Just been diagnosed too! Symptoms seem fairly mild atm although my brother has been through symptoms of your severity and subsequent initial op. Any advice re diet? Seems like available info is very conflicting as the condition doesn't seem well understood.

Hey bud, sorry I haven't responded yet. It's actually been a while since I've been on 2p2.

As far as dieting, it varies a lot by person. A very good friend of mine has been having UC for about 17 years, and he's able to eat plain hot dogs from Sonic, plain Tyson chicken strips, stuff like that, but spices will have him in lots of pain. I was able to handle spices, but I stayed away from fried foods, fast food, etc. There are tons of diets out there to try (Fodmap, SCD, Paleo), so it's all about how your body reacts to certain foods. Sometimes, it didn't matter what I ate; if I woke up and drank a glass of water, off to the bathroom I went.

Feel free to ask any questions (here or privately) if you have any. There are a few people here that have been through these things as well. Almost any information will help. Also, it's probably worth checking out the healingwell forum to see if there's any other information you can gain. Do smart research.

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As far as myself, things have been going well for the most part. I had another follow-up appointment a couple weeks ago, and everything is progressing along nicely. We spoke about possibly shortening up my timetable until the 2nd and hopefully 3rd surgeries, and the doc seems to be ok with that. He's more on the conservative side, usually wanting to wait 6 months between the first and second (which I believe I mentioned somewhere earlier in this thread) so that the steroids are completely out of the patient's system. But he said my body has handled everything well, and I'm not having any issues as of now, so we may look at a mid-February date when I go back in at the beginning of January. Then, hopefully 1.5-2 months after that, I can get the final surgery done. I'm pretty excited about that possibility.

Life with the bag isn't bad at all. I don't really have to get up for the bathroom unexpectedly while eating or playing poker, which is a bonus. But I'm still looking forward to life after the bag and getting on with the rest of my life. Not that I haven't been living, but sometimes I'm a bit uncomfortable with the bag. The shape is normally hidden by a jacket, but since I'm so skinny, it's possible that it could be noticed without a jacket. Not that it would matter a ton, but when it begins to fill up, it could look a bit strange.

Glad to hear things are going well for you.

Definitely keep us updated as I find it quite interesting to follow someone going through my nightmare scenario and it actually not sounding that bad at all.

I've still been one of the lucky ones without any real issues since my first flare.

Love the avatar hahaha.

Glad to hear things are still going well for you. I hope that continues to be the case. Not that surgery is horrible, but if you can get it under control without, more power to you. I think that's awesome.

One thing I forgot to mention is joint pain. I've actually had quite a bit of joint pain develop over the last few weeks, much worse than when I was on prednisone. Doc thinks it could possibly be arthritis, but he also believes there's a reasonable chance it could just go away. I'm seeing him again on the 8th, and we'll go from there. Hoping it slacks off some soon.

I spoke to my rheummatologist about surgery and joint pain a while back. As I've mentioned the joints are the biggest issue for me. He seemed very positive about surgery eliminating colitis related arthritis.

So had a little bit of a scare just after New Year's. Since I'm on 6mp I get monthly blood tests done to make sure everything is good.

Well, Jan 2nd I get a phone call from my Dr. informing me the readings on my liver from my last blood test were abnormal. She tells me to get another blood test done asap to confirm and also informs me of a liver ultrasound they have booked for me should the new blood test confirm the results from the other.

I'll be honest in saying I've never thought about the side effects of 6mp too much, but this was definitely a reality check.

The good news is my 2nd blood test came back normal so everything is fine. I came down with strep throat and was on penicillin around the time of the abnormal blood test so the Dr. attributes the abnormal liver results to that.

Things still on track for you JayA?

How are things going for you Spenda? Doing well? Considering surgery or not really?

That is pretty scary man. I'm glad everything ended up being ok at the end of the tests. And like I said before, that was one of the reasons I was ok with surgery. Obviously every medicine has side effects, but we don't necessarily know the long-term side effects of a lot of these newer meds because I don't believe anyone has been on them for 2+ decades (definitely could be wrong there), especially Humira, 6MP, Imuran, Remicade, and the other more serious ones. There are a lot of question marks there. I'm not trying to swing you one way or the other of course; if it's working for you, that's more than great. And as long as you have a good relationship with your doc, then it'll probably be fine. Just my two cents. Of course there was a lot more that went into my decision than the possible long-term effects of these drugs.

I had another follow-up last week, and things seem to be going well. We scheduled my next surgery for February 11th, and my pre-op is on the 5th. Doc said recovery for this surgery will be very similar to the first one. So I'm expecting to be quite sore after and have a restricted diet for a couple of weeks following.

In this next procedure, he will be creating the j-pouch and removing the rectum. He'll also be making sure my small intestine will be long enough to complete the digestive tract for the third surgery. If it isn't, I'll be living with a stoma. He said it happens in about 5% of patients, I believe. It would be disappointing, but I would still choose being an ostomate over living with my previous version of UC for the rest of my life.

I've been slacking on my blog a lot, actually haven't written anything since late October or early November. I've mostly been busy playing poker, and my girlfriend was down from grad school for the Christmas break, so I was able to spend a lot of time with her. I'm planning to road trip to go visit her in about a week, and I'm considering stopping in Tunica for the WSOP Circuit on the way, maybe for a couple of nights, to play 1 or 2 events.

One thing I haven't done yet is become real physically active. The joint pain does hold me back a little, but I'm also not super comfortable with the bag yet wearing a thin, slim-fitting t-shirt. I'm also still learning what foods affect me the most and what times of the day my stoma is the most active. It's actually a great trial run in the sense that I'll have a real good idea of what foods will probably cause me to need a bathroom sooner than later once all three surgeries are complete (assuming everything goes right with this next one).

Keep me updated on your situations as well; I'm very interested. It's interesting to see how this disease affects other people and their daily lives.

Following along and wishing you the best of luck. Crohn's disease here, diagnosed in 2003, surgery in 2007 to remove 14in of small intestines.

Currently in a bad flare and heading to see my Gastro DR on Wednesday. Was 138 lbs a week before Christmas and was 116 as of last Monday.

Following along and gaining inspiration through your will and fight.

Thank you, I appreciate it. How does a shorter small intestine affect your digestive system? Any idea if it's different from having part or all of your colon removed? That's pretty brutal though man, I feel for you. I know how rough it can be not being able to eat like you want and maintain a healthy weight. I hope things get better soon. Feel free to share any info or vent in here if you'd like, please.

I was supposed to go down from 5mg to 2.5mg on Pred the other day. My White Blood Count came back way too low so Doc took me off of Azathioprine (Imuran) but said to keep taking my Lialda and Humira. We'll re-check bloodwork in 2 weeks.

I didn't want to go down while off the Imuran but he said to do it, so today was my first day at 2.5. Last time I went down to 2.5 I was on Imuran/Lialda and lasted all of a week before going into a flare. I've felt great joint/stomach-wise since starting Humira but overall I feel a bit fatigued/depressed although it could be the winter weather and the fact that I'm doing zero exercise. I still look back and hate that my first flare was when I was in the best shape of my life and now 15 months later I look and feel like dog****.

Good luck the rest of the week man. Hopefully the flare can stay away this time around.

It's definitely rough. I'm still down about 20 lbs since I started with all of this, but I'm just looking forward to being healthy and gaining weight. Keep your head up and stay positive. It'll work out.

How is it being on Humira and Imuran at the same time? Any noticeable side effects, etc.? They gave me the choice to be on both at the same time, but I decided to stop the Imuran and just go with Humira by itself (well along with pred of course).

Nothing noticeable maybe more fatigued but probably because I'm just further out of shape.

Doc said the imuran would help my body not reject the Humira. Main thing is just getting off the prednisone though I do wonder what's worse, all these meds or just 5mg of Pred without them.

thanks for the updates, guys! Good luck with the Feb surgery, Jay.

Yeah, there are probably a lot of factors contributing to the fatigue, including not being able to have a proper nutritious diet. I did find a good liquid multivitamin from Natural Vitality that's worth checking out. It's helped some with being fatigued in general, and it'll be quicker to digest than a pill form MV.

In regards to not knowing the effects of the meds...it seems as if our generation is sort of the guinea pig generation (for lack of a better phrase) for a lot of these long-term drugs. Once people who are on Humira or Imuran for decades, the industry will have a much better idea of how the body reacts to them over a much longer period of time, imho. Hopefully it's a good reaction.

Thanks buddy, I appreciate it!