I had my doctor's appointment this afternoon with the new doctor here in LV. I really like him so far. He actually grew up in New Orleans and went to high school with some of the docs at the Nola practice I was going to, so we have a common link. He was very informative and open about everything. He'd like to keep me on the Humira for a little longer to see how it does, while tapering down on the prednisone (fingers crossed it doesn't make me miserable). I'll start the taper tomorrow, and I have a follow-up appointment in a month. We discussed surgery as well, and it's definitely a realistic option for me if I choose to go that route. I'll see how the next month or so goes and go from there.

Hoping to check out the rec center at UNLV early next week and start some sort of working out, even if it isn't anything formal. I'm ready to get more active again!

Not gonna bitch in your thread

I think I'm gonna get a surgery consult soon though.

Feel free to vent if you need to man. This condition can be rough mentally. If you don't feel comfortable doing it here, don't hesitate to shoot me a PM.

Not much to update today. Ate at Holstein's yesterday evening with my dad before he headed back to Nola. Solid place, first time going. I think the cereal I ate yesterday morning kinda upset my stomach some. Probably too much milk at once, even though I'm using goat's milk. Just getting settled in here, plan to cook some tomorrow.

Hah all good I triy to not really complain about my UC to anyone, perhaps it's my way of not freaking out myself. Hell only a handful of non-family people IRL actually know I have it. I got down to 2.5mg on pred for about a week until gut issues came back. It's such a defeating feeling, I've been on steroids for 8.5 months now and thought I was just a couple weeks from being done with them.

I've been in that exact situation a few times myself over the past 8-9 months. It's rough enough physically, and then it messes with your emotions too. Poker has taught me to really keep an even mindset about most things in life, but it's still difficult at times. Having a positive attitude towards this does go a long way though. Keep your head up; 2.5 mg of pred isn't too bad, even though you'd like to be off completely. And just remember that it could always be worse. Progress is progress, and eventually you'll come out of it well.

Yea 2.5mg is very little and I think Dr's would actually let me take this amount instead of going on Humira/Remicade but all my gut stuff came back about a week on it. I decided to stick with the pred amount and fight this from both ends if you know what I mean. Seems like arthritis symptoms are being kept at bay by the Azathioprine.

http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

http://www.youtube.com/watch?v=xecQ21hLIKI

This is a short introduction of what is it.

http://www.youtube.com/watch?v=WEMnRC22oOs

And this is a long tutorial describing how to do it at home.


The whole idea sounds disgusting, I mean in plain terms it means taking some healthy donors ****, and putting it up your colon.

It's a legit medical procedure, although it is only used officially for C. diff infections. But it could be useful for all kinds of digestive diseases.

I'm not sure it's a "legit medical procedure" for UC just yet, I thought/think it's still in the testing stages.

I've read some threads on healingwell about it and I agree, I don't think it is legit for UC yet. At first I couldn't believe people were actually doing it, but I guess if nothing else is working...

Well at least the arthritis symptoms are being kept away. I haven't encountered that aspect of the condition too often tbh. I think I have been pretty lucky in that area. Every now and then I get pretty bad knee and hip pain, but it's not daily or anything.

The procedure sounds pretty crazy. First time I see that. I always wondered if they could do colon transplants, but I never even considered this aspect.

Went to get the prescription probiotic today, but my insurance isn't covering it unfortunately. There was a discount applied to it, but it's still $50. I plan to call my doc tomorrow to see if there are any cheaper alternatives, but the pharmacist said this one is really good. I'll see what he says and weigh the pros and cons.

First day of work at UNLV as a grad assistant is tomorrow as well. Hoping for the best!

VSL-3?

Survived a 3.5hr plane ride today, so I got that going for me.

Sometimes, the ass just knows and cooperates.

You guys with arthritis symptoms, how did those start? My hands have been killing me every morning for weeks now, and the last week haven't improved much during the day. I'm back to the dr on Tuesday. Should probably go back to the gastro, it's been over a year and two primary physicians ago.

Yes, VSL-3. Have you taken it?

Yeah, you should definitely see a GI if you have a good one. I get pain in my elbows as well, but it's hard to say how it starts. It's really hit or miss for me, and I've been lucky that it's been miss more often. See if there are any meds you can take to help it that won't mess up your gut.

haven't taken it but my GI mentioned it cost a lot b/c it was one of the few (perhaps only) that has been proven to actually contain the number of bacteria it claims to have.

I started it late last week after getting everything straight with my insurance. I've read some positive case studies on it, so I'm hoping for the best. I'm being diligent in taking it twice daily. I also started the cortifoam, though I'm not consistent at all with that. Hard to tell if it's helping any, probably because I'm not consistent.

Sorry for the lack of updates. I started my GA position at UNLV last week, and I've just been trying to settle in and get into a routine. I had to miss Tuesday because I was running a low grade fever and just feeling like **** in general. So I figured it was best to stay in and rest instead of pushing myself and possibly ending up in the ER for fluids again. I'm doing a much better job of staying hydrated living out here that's for sure.

I've been eating mostly chicken, eggs, sushi, tuna salad...keeping it simple for the most part. I have an addiction to the chocolate chip cookies at Whole Foods. Still not sure if they mess me up or not. I've also been eating a lot of fruit (watermelon, honeydew, blackberries, raspberries). Things seem to be better overall, though I still have some bad days. Really hoping to make some progress before my next follow-up and come closer to a decision of surgery vs no surgery.

Sounds like you're doing pretty good and on the right track. At least you seem to be able to still be living life, so puzzles me why surgery is even in the picture.

I think I'd have to be bed ridden for a while before I contemplated surgery.

Anyway, I hope things continue to improve and the bad days eventually disappear. My full recovery took a solid 6 months before I felt completely normal, but still almost year before I was back to my old self.

Just passed 3 years since I was diagnosed. I'm very lucky to have had only the original flare so far.

What does "normal" feel like? That's an area I'm unsure of and also a reason I'm still considering surgery as an option. I'm still having frequent bowel movements, and they aren't exactly predictable. The only good thing is that they have been blood-free. They can still be painful and come at bad times. My main concern is that I'll have an urgency issue while teaching a class or while taking an exam. I'm not sure how this disease will affect me through grad school, especially since stress is a possible trigger. And it sucked missing 3 classes on Tuesday, but at least it's only the first week.

If I know what my "normal" will be like, then it'd be a pretty easy decision. I'm just unsure of what to expect =\ Should I expect less frequent bowel movements? Less effects after eating? I know everyone is different so I will keep that in consideration when reading your response.

Damn that blows. Sounds like you're more toughing it out than actually living life. I had the impression you were doing a bit better than you just described.

Normal for me is literally back to how I was before diagnosis. Zero blood, mucus or pain and completely regular bowel movements.

Like I said it is a long road and you have to be patient, but there is definitely hope that you can get back to normal again. Like I mentioned before at my worst I was going 15+ times a day and waking up every few hours while sleeping to go, so it was pretty bad. I can definitely recall many times having to just stop what I was doing to deal with insanely painful cramps for a few mins.

I guess for me, I see surgery as a last resort after a couple years of suffering. Obviously easier for me to see it this way having experienced a return to full health and knowing first hand it is possible.

Yeah, I mean I do suck it up a lot tbh (not trying to sound like a badass lol). It sucks, especially at work/school or while playing poker. Couldn't really get in a rhythm while playing live last night, which was a little frustrating. I'm gonna see how I'm feeling by Tuesday, and if it's still interrupting my daily activities, I'll probably call my doc and see what he says. Just frustrating overall at the moment.

Sorry for the lack of updates recently. I've been mostly busy with school and work and poker during the latter part of the week. I saw my doc last week (moved my appt up) because my symptoms were getting pretty bad. Things started to deteriorate once I tapered down below 30 mg of prednisone, unfortunately. He said I should get some bloodwork done. So last Friday, I got that done, and I received a call from the office this morning, as I was half asleep. The person I spoke with said the bloodwork came back, and the doc was going to prescribe me an iron pill and see me back in 2 months. I said ok and hung up. Then I realized how dumb that is. 2 months is a long time considering the symptoms I'm currently experiencing (he knows the symptoms because I just had an appointment a week ago today). I thought that was pretty absurd.

So rather than calling them back right away, I decided to talk with a good friend of mine who also has UC. I told him the situation and explained how I feel like my only option at this point is surgery. He suggested I try to find a specialist first, and then go from there in regards to surgery vs no surgery. So we did some research, and we found a hospital out in LA that is ranked 5th in the nation in GI care. I gave them a call, and the lady gave me 3 UC specialists in the area that accepts my insurance. Did some research on all 3 and selected a winner. So I have an appointment out in LA next Thursday afternoon. It'll be my first time to LA. I was hoping to go there under different circumstances lol, but it'll work. Just hoping for a positive trip overall.

Trying to decide between driving and flying to LA next Thursday. The cost would probably be pretty similar because I drive a Tundra. And I would rent a car from LAX if I were to fly in. I guess it would be convenient if I was having stomach issues that day, I could get there in an hour compared to 4 hours. And I wouldn't have to deal with LA traffic trying to get out of LA. The inconvenience would be arriving around noon for a 3:00 appointment and not leaving until around 9 pm. But then again, that would give me time to explore, which could be fun if I'm not sick that day.

Anyone have experience with the drive from LV to LA and vice versa? Is traffic really as bad as I always hear? Thoughts on driving vs flying?

I've done both. Renting a car at LAX sucks. Driving in LA can suck, depends upon where your appointment is. Noon-3 isn't going to be too bad traffic wise in most parts of LA. I used to commute to LA regularly from SF and I preferred flying into burbank when I needed to rent a car, it is waaaay easier there. Again, depends on where your appointment is.

Appointment is in the West Hollywood area, Beverly Hills. Looks like about a 30 minute drive from each airport to the doctor's office. I have zero experience with Los Angeles, so your advice definitely helps. I appreciate it.

Edit: Just looked at prices to fly from McCarran to Burbank, and it's actually more than double the price round trip than flying into LAX. Blah.

Ugh that sucks. How about renting an economy car in Vegas and driving? Just don't eat before the trip?

Might come out ahead honestly. I'm gonna check into prices and gas mileage today.

Waiting for my doc to call back, hopefully with some type of meds that'll hold me over until I can see this specialist. I was planning to bring an ice chest with healthy foods that I know will agree with me, and I'll just eat light and be aware of rest stops and truck stops if I end up driving.