Good advice. Same I received from a few others I talked with. Not sure why I was even considering not calling to update them.

Thanks buddy. I'm hoping the same

Called the office this morning when I woke up, and was able to talk to the nurse and let her know my temperatures throughout the weekend plus how much fluid has been coming out of the drains (not a lot). She talked with doc and wanted me to update them in the morning.

Ran a fever tonight, up to 101.5 I believe, and ended up taking some meds and had a short nap. When I woke up, I had a missed call and voice mail from my doc. So I gave him a call back, and he was asking how I was feeling, which I thought was an excellent gesture for him to do after work hours and from his personal cell phone. I updated him on tonight's fever and we discussed some other possible signs & symptoms. Overall, he seemed fairly perplexed at the entire situation. He told me the cultures taken from both drains did not grow into anything that would indicate an infection. He said he's gonna see what time they can fit me in to see him in clinic tomorrow between surgeries. Hopefully we can figure this out.

I'm taking an antibiotic at the moment, something different than they had me on after the surgery, but it doesn't seem to be stopping whatever it is that's causing the fever. Strange situation that can hopefully be resolved soon.

Going get lab work done today at 12:30. I believe they're checking my WBC and for sepsis (blood infection). Then I'm seeing doc around 1. Hopefully this will bring us closer to a solution.

Sorry to hear things aren't going as smoothly as they should be. The good news I guess is once this is figured out you are one step closer to being back to a normal life without UC!

Keep us updated

Keep on keeping on op

how's it going bud?

Hey guys, just wanted to let you know that I am still here and well. I plan to post another updated quite soon about everything that's been going on.

Good to hear. I look forward to the update!

Annnnnnnd here we go. Last update, I was going to the hospital for the blood work, then going up to see doc in clinic at 1. Still had an infection. And they also decided to somewhat scope me in the office. While I was awake. No one should be awake for this. There's a reason anesthesia is involved. The air going up is very uncomfortable and gives an extremely bloated feeling. I thought my ostomy bag was going to bust right there. He noticed a small separation < 1 cm between the j pouch and rectum. He said he thinks it'll heal up once the fluid is all drained out. He admitted me into the hospital (yay).

So I was admitted to the hospital after a 2-3 hours in the admit office (but I went take an hour nap in my mom's vehicle of course). I was told not to eat because I would be getting another scan that night so the docs could see the progress of the draining. Next day, I spoke with doc, and they said the drains have been reduced, but they wanted to put a bigger tube in the posterior drain that's inserted through my hip. So later that day, I was taken back downstairs for the procedure. It hurt a little the first time, so I wasn't expecting a ton of pain. I was slightly wrong. I felt like he was drilling this drain through bone. And it hurt a ton to lay on the next few days in the hospital.

I was given more dilaudid, up to 1.5mg at one point, to deal with the absurd pain, and just to make me comfortable. I also had a tube inserted anally, thinking it would help with the draining. Nothing came out, and by the night time, I was asking them to take it out because it was beginning to hurt a ton and interfering with my ability to urinate. I was so uncomfortable. The night resident doc on call wouldn't do it. He called his boss, and he didn't give him the go. So I texted my doc and explained the situation, and he flexed his muscles, and the drain was taken out of my anus.

I was finally able to come home on Monday, and I thought my issues were going to get better at this point. Bring on the anxiety. I was never weaned down from dilaudid. Quick research will show you that this drug is seen on the street as a substance up there with heroin. It's 8 times stronger than morphine. Felt great while I was in there. But not being weaned off of something like that ****ing sucks. I had bad anxiety for a couple days. I tried valium, which seemed to help the first time, not the second. I tried a magnesium supplement from Natural Calm, which seemed to help overall. And I texted my doc about the situation. He suggested weaning down using the pain meds. I started with the Norco 10s, but I vomited from it when I took one in the middle of the night on an empty stomach (dumb idea in retrospect). So I moved down to the 7.5s, and have been slowly increasing the time between doses for a few days. My last dose was around 6ish yesterday evening, and I feel ok today. A very small amount of anxiety, but I'm going to see if I can go without taking a 7.5. I also finally got out of the house last night. I ended up just taking a ride, got something from Sonic, listened to UNC/Duke and some classical music, and headed back home. It felt good to get out. May do that again today, we'll see.

I go back to the doc on Wednesday. I'm supposed to get scanned again. And then I will see the ostomy nurse in clinic before seeing the doctor. The plan was to get this drain out of me, which I think has a reasonable chance of happening. We've been flushing it daily, emptying the fluid, and measuring and recording the data. It's been less and less each day. Hopefully things can go well after that.

My girlfriend is down for spring break this week should be coming spend a few days here during the week. We also have Cirque tickets in Baton Rouge (gift from her mom) for next Sunday (week from today), so I'm hoping I can be much better by then. This surgery didn't hurt as much after, but I feel as if this surgery, plus the infection, plus the first surgery I'm sure, took a lot out of me in general. I get fatigued easily, and I'm out of breath walking around. Hoping to get stronger over the next week and provide another solid update at some point.

Also, anxiety is a terrible, terrible thing to have. I really feel for people who struggle with this daily. I hated it. I slept on a cushion thing on my floor one night because I felt too anxious staying in my bed. It was a very, very weird experience. Something I'd like to not go through again. Don't do hard, addictive drugs. I wasn't on dilaudid for very long, but just long enough to have some sort of psychological want for the drug, I'm sure.

They don't anaesthetize over here when scoped unless requested. Not nice, can imagine it's even worse with the ostomy. I thought I was going to unload over the nurses Should be worth it in the long run!

Damn, that's nuts. I've been under anesthesia for both of my scopes before the first surgery, wasn't given an option. I'm glad I was. It's brutal man, haha. I'm definitely trying to focus on the long term as much as possible. I keep reminding myself it's just like poker. Lots of variance in health and emotion at the moment, but it should be worth it if everything goes correctly.

When we say scope we mean full blown colonoscopy right, not the flexsig?

I'm really unsure of the difference tbh, but I can look it up tomorrow. My initial guess is probably a flexsig since I don't have a colon and he didn't go into the j pouch, at least I don't believe so. He was in far enough to see the small gap. Either way, just an uncomfortable situation that I was not expecting at all.

Wow glad I read you say that first. My GI kept pushing for the flexsig saying I could easily do it without anesthesia and be in and out in a couple hours and back to work.

Never did it because I was showing major symptoms and didn't see the point. We already knew I have UC...

Have you considered or tried a plant based diet? http://www.drmcdougall.com/health/ed...olitis-severe/

My good friend who has UC/Crohn's said the sigmoidoscopy was not fun at all. I'm certain they weren't able to go as far into me as they would be for someone with a colon. So I'm sure it'd be a bit more uncomfortable for you. The worst is the air pushing through. Real uncomfortable. Recovery from it didn't take very long for me, but again, could be different for someone with active UC and a colon.


I did a little research on it before surgery when I was considering diet as a treatment. It has its merits. It's probably not something I would go with now since I've pretty much ridded my body of the disease (hopefully), but it may be something that works for others participating and reading the thread. Overall, everyone's body will react differently to each diet. Just have to find your niche diet that works, if that's the route you choose.

I imagine you aren't flaring right now, so no inflammation? That's what seems scary about the flexsig to me, you're generally doing it with a seemingly tighter passageway.

As far as I know, I'm not flaring. Everything goes through my stoma, my colon was removed, and I only have a small amount of my rectum still in place (where the j pouch connects). I can definitely understand your concerns. I would be hesitant if I was flaring as well. That's why they stopped my scope short in Vegas. Too much inflammation.

I did forget to say that I was able to get the final drain out last Wednesday afternoon (3/12), which was great to do. The pain in my hip was terrible while sitting in a car, and it would get pretty bad just sitting or lying down. Doc said there was still some fluid in there, but since I wasn't running fever, he was ok with the drain coming out. He said the fluid will either be absorbed by my body or just drain out through my rectum. I've actually been having a lot more discharge coming out through my rectum, so I'm assuming my body decided to go that route.

Thursday night, I ate some homemade crab and corn bisque. Cramped up pretty bad Friday, and when I woke up Saturday morning, I could barely move. Terrible pain. My girlfriend was amazing and sweet enough to fix me some warm water at 5am. I drank that, got in fetal position, massaged my abdomen, and was finally able to get things going. I'm fairly certain I had a blockage, probably from not chewing the corn properly. Definitely staying away from corn from now on.

I was able to move around decently well besides that. Got some rest in and had a great time hanging out with her for spring break while she was down. The Cirque show in Baton Rouge was real good and a lot of fun.

I've also been feeling a bit run down and fatigued between 5 and 8 pm each day, but I haven't had a fever with it, which is good. I updated my doctor yesterday, and he said everything seems fine from what I told him. Still having some midsection pain every now and then, and my abdomen has been pretty sore from the blockage, though it's getting better now.

My next appointment is April 2nd. I'm not sure what's gonna be happening at this appointment. Hopefully I can start to heal a bit quicker now that the infection seems to be gone, and I don't have any drains in my body.

Edit: I also weighed in at 132 lbs last Wednesday. So now I'm up to a grand total of 30-31 lbs lost since I was diagnosed 14-15 months ago.

I've been having trouble sleeping since I've been out of the hospital. I spent about 16 nights in there, and if you've ever been in the hospital, you know you don't get a full night of sleep. Mostly just naps. Nurse comes in every 2-3 hours, then they draw blood between 4 and 5:30 AM for some reason. Then shift change is at 7 am. Maybe my body got used to that, but I'm not entirely sure. I tried a 2.5 mg dose of melatonin once, but I'm sure that's something that tends to work overtime and not right away like the more potent sleep aids. I try relaxing as much as possible, and I try to limit my phone/iPad usage before bed as much as possible. But I'm still having trouble. I've been up since 4 am this morning (4 hours ago) after going to bed around 10:30-11pm. Hoping it gets better with time. If anyone has any sleep ideas, please feel free to post. I'd rather not go the Ambien, etc. route tbh.

Not too sure yet when I will feel up to making the drive to Harrah's to get back in a grind routine. Maybe today, maybe next week. I am looking forward to some college basketball and relaxation this weekend, though.

I've been doing some reading and research on various workouts and whatnot and am starting to form some ideas for what I'm going to do once I'm done with the surgeries. I'm really looking forward to getting back into a gym and putting on some weight. I haven't been this light in probably 12 years or so. I was able to pack on some muscle after high school, going from 145 my senior year to about 160 within 2-3 years after. But I'm so much more knowledgeable about nutrition and exercise now that I know I can do it again and probably do it in a much better and healthier way.

I've been having an urgency feeling lately. It's a weird feeling after all this time of not having that. That's my main source of pain as well. I'm draining a reasonable amount of fluid through my rectum lately. It's gotten to the point where I'll just bring my phone in the bathroom now, just like the good ol' days, lol! Still feeling run down/fatigued at various points throughout the day. When I take the pain medicine (Norco 7.5/325), I feel better after 30-45 min. It helps the pain some, but it's been giving me more energy. A bit scary because I don't want to rely on that. I bought some Turmeric at Whole Foods today to take for inflammation instead of relying so much on ibuprofen/Tylenol like I've been doing lately. I've been keeping doc updated, and he said everything seems fine. He said my recovery is pushed back because of the infection, but I'm not sure how long he's thinking. I'm hoping I can have the next surgery done in the second half of May, but we'll see. Looking like I'll just skip Vegas this year and play it safe.

I also got out of the house and went play cards Tuesday night finally. It felt so good to be back in that environment and using my mind again. I didn't feel super rusty either, which is good. I focused a lot on bet sizing, which I feel is something I'm constantly needing to improve upon. First hand I play, I flop trips and river a boat. Made nut flush a few hands later multiway, and hit quads a few hands after that. Harrah's missed me I guess <3 Hit my goal of playing for 3 hours that day. I plan to ease back into it over the next few weeks, if I'm feeling well enough to go. Hoping to get back there this weekend. Just gonna watch a lot of college basketball over the next couple of days.

I had my second follow-up with the doc on Wednesday. He was glad to actually see in person that I'm feeling and looking better since my last visit, instead of me just speaking with him on the phone. Pain-wise, I'm doing much better. Had no real pain or tenderness when he palpated my abdomen. He did say the infection has pushed back the timeline, and that I may not have the next surgery until August. Not exactly the news I wanted to hear, and he is a conservative doctor. But I do trust his opinion, and I'd like to minimize future problems as much as possible.

The main reason it may be pushed back that far is I'm still draining fluid from my rectum. He explained to me that there's a sinus canal that goes into that area, and the fluid left over from the infection is draining through there, into my rectum, and then out of my body. At least that's what I understood when I repeated it back to him in my own words. I feel as if it's gotten much better this week, though. Not feeling that urgency feeling as much. And I'm not draining as often, I'd say. He expects it to eventually slow down, and then stop, which will tell us that I've healed. My next follow-up is June 2nd, but I plan to keep him updated between now and then with my progress. We'll probably do some sort of contrast study at that time to determine how much healing has taken place.

With that being said, and with the surgery possibly being pushed back until August, I'm at least able to make tentative life plans. I'm planning to move back to the city sometime this summer, if everything goes right, but I probably won't make a final decision until I get closer to my follow-up. This also frees up all of May for me, which will probably be a busy month (bff's wedding, birthday, WSOP Circuit here in Nola, girlfriend coming back home for the summer).

My general plan at this point is to just take things a day at a time. And to remain positive of course. I've somewhat gotten back into a routine with poker, which is good. I'm still having trouble falling asleep at night. I'm undecided if I want to see my family doc about the issue or just keep trying natural sleep aids. I noticed there were some different sleep aids at Whole Foods. I also have some melatonin, but I'd hate to rely on that and have my body start producing less on its own. I really would like to avoid something like Ambien. I've heard the stories, and I'm not sure how it would affect me.

I also finally updated my blog. It felt good to write up everything, though I kept it fairly short considering everything that's been going on.

As far as foods...fast food just goes right through me. Mostly just liquid. Real food is a lot thicker. Go figure, right? Makes it much easier to stay away from fast food, even though I don't have a real urge to eat fast food regularly. I'd much rather cook, eat sushi, or find a good burrito place like Chipotle if I'm on the go.

I'm also really looking forward to getting back into the gym and back to playing basketball. I'm unsure if I wanna just start before the surgery, or if I want to wait until after the surgery. I guess it'll depend on how my body does over the next 2 months and what doc tells me on June 2nd.

My last weigh-in two days ago was 129 lbs. Sigh. It's proving rather difficult to keep the weight on at the moment. I probably need to eat smaller meals throughout the day. Right now, I'm on a weird eating pattern since I sleep in most mornings, and I generally eat 3 main meals per day, along with a little snacking in between, mostly bananas, other fruit, or a health bar, like Larabars. I'm actually not too upset I'm down to 129 lbs. I haven't been this weight since at least middle school, but it also gives me a chance to sort of start over with building muscle. I was able to build muscle when I got out of high school and into college, but then when I stopped working out, I think some of that muscle turned to fat (even though I was still skinny) because I stayed around the same weight. As I get closer to working out and getting on a better managed diet, I plan to set some fitness and physical goals for myself. Really excited for that time to come.

Yesterday, I decided it was time to get more active. I'd been having some lower back pain, and I've had some rhomboid pain while playing poker, probably due to bad posture. I've been trying to recognize when I'm slouching and correct it. Yesterday, I did 2 sets of 5 pushups followed by 20 seconds of planking. Today, I did 1 set of 10 pushups followed by 1 minute of planking. Just that small amount of exercise was enough to get me winded, but I also felt energized after. I also sat outside and did some reading on my day off today.

Small goals so far...hopefully they'll increase and become more frequent!

Good luck Jay. I also have UC, although no significant issues last few years. Taking Delzicol, Canasa and Mercaptopurine currently. Cheers to the exercise, keep it up.

Thanks for the words of encouragement. Glad to hear you aren't having any symptoms. The only medicine of yours I'm familiar with is Canasa. What do the others help with?

Delzicol is a new version of Asacol, that I believe someone mentioned earlier. Basically coats the intestines. I think the only difference is that it's a time-release capsule now. Mercaptopurine is an immunosuppressant that was originally intended for patients with leukemia but it's now prescribed to people with UC/Chrohn's. That's the one that scares me - it's pretty intense and requires frequent bloodwork and check ins with doc.