GI appointment today

ItsAlwaysSomething said...
Somedude-

You're too young to feel so bad :-(

I know!!!.......

sniff sniff...

up the butt, in the bag, or door number 3 -

"i believe that would be in the butt Bob"

c'mon, u can do it dude !

Somedude said...
I went and saw her. She looked at my bloodwork. I had 2 recent ones. One done in Nov and one done 2 days ago.

I'm passing a lot of blood again, more than before. In august, I had a scope done where the inflammation dropped in half, since then Remicade doesn't have any effect now. It never really did, but now it doesn't do anything for real.

My goblins are still ok, but I'll lose them fast because she told me my inflammation markers are high again. I may have to eventually have another transfusion to get more goblins.

I asked for Humira, she doesn't like it and said she can't approve it...I don't f.. know why, I didn't care either.

I'm enrolled in a FMT trial they have in Hamilton On. She approved that, so hopefully I'll do some official fmt.

Keep in my, I'm still on a strick gluten/dairy free diet, been on it for a year. On remicade also.

She wants to scope me again in beginning of Jan. I asked, what for, Obviously it's inflamed and markers are high. She still wants to see.

Well, knock yourself out, I don't mind going for a colonoscopy.

I have a few more things I want to try, but surgery is imminent now.

unfu*king real man, since diagnosing, 1.5 years ago, no remission whats so ever, just hanging around something between remission and full flare...is there a word?

oh and for the record, it's all stereo's fault.

That's awesome you sound more rigid than I am. If only I could bring myself to eliminate dairy...

Wait, ME?! What did I do? I know its a real pain in the ass, but have you looked at any other specifics in your diet/daily routine that could be causing issues? I had to rid shampoos, hair gels, and lotions that contained gluten a while back. Soy sauce and oats almost always contain wheat/gluten.

So not a lot of stomach pains/cramps? Just alot of blood? What Quincy is saying is good advice. Rectal meds to the rescue, either those, enemas or suppositories. I know I'm using non-medical suppositories, but even using something down below, just makes sense, and its helped me alot! (since i ditched Canasa and started the natural supps anyway).

I'm with everyone else YOU CAN DO IT dude! Just don't listen to me anymore ha

Since you don't seem ready for surgery yet, I'd also give a different oral mesalamine and the enemas a try again. However, if you were ready for surgery, I'd tell you "GOOD LUCK!"

Hi Somedude,

So funny I think all people on the board are woman and I find out your a guy, so silly of me. Just because I'm female and really don't know any man with gut issues I think everyone with UC is a girl! I'm saying that because some old posts said you were a guy. Somedude didn't give me a clue because I say "dude" to everyone :) ANYWAYS.......

TRY THE TRIPLE ANTIBIOTIC THERAPY PLEASE or try to get a shot of Rocephin. See I tried them, they didn't work completely but I thought things improved a little.I also ruled out parasite and actually took prescription parasite meds for three days. My doc was or is awesome about trying new things, he's a MD/Lyme's doctor, he believes whole heartly in antibiotics.  I had a Lyme's test, came back chronic lyme's disease, are you a outdoorsy person? This should be checked.

Hearing you get down and out is weird, you're always got a one two punch left in you.

I hope you are feeling better!

Hey Somedude...

I don't have any advice really.. but still want to send some love :) I always look forward to reading your posts and u seem like a really cool guy.

It really sucks when even remicade isnt working... for me it works kinda but with a lot of nasty little side effects... and i'm always thinking about my options , not sure what to do next... I heard somewhere that there a new medication that should be available in may 2013 kinda like a biologic but better with less side effects... maybe it's worth looking into... but i'm not even sure what it is... Anyway, whatever you choose to do, good luck, and don't worry, you'll be fine ;)

Somedude: It hurts to hear you report "I'm just so tired now." That says it all, and like others have mentioned it's not like you.

Did the transfusion happen? If needed, that might give you the chance to take a deep breath, think and regroup. Sounds like you have a few options to check out before surgery. It would make my (and a lot of other's) day to hear you are feeling better.

Not to add to the nag, but have you ever looked, touched and held the ememas up to the light? Thin applicator. Like a smooth soda straw or chop stick--but not as long!! Couple of inches. At least that's what's available here. Nothing compared to what you've been through. No promises but they do help with bleeding for some.

Somedude - amen on pred I can't get the hell off that devil drug

Yes, it does kind of suck you can't try Humira, but studies show that it is only about 40% effective ("effective" meaning shows improvement, not necessarily remission) with U.C., which is least out of all the immunosuppressants and biologics, and it is not technically F.D.A. approved for UC, only Crohn's. I'm guessing same in Canada, which is why some docs won't prescribe it. Plus, chances are that if the other two didn't work (Imuran or Remi), then Humira wouldn't either. I tried it combined with methotrexate last-ditch for a month and a half before surgery, and nuthin.

Rectals are great, and I stand by the "treat from both ends" practice... they will treat the rectum and part of the sigmoid that they reach, but the problem is that's ALL they will treat, which is certainly no magic treatment for pancolitis.

You're one snippet of good fortune is that you are not dealing with the pain and cramping. (You might be a little more gung-ho on the surgery if you were!) I was opposite from you: never had any continence issues but tons of pain once it reached pancolitis. It all sucked, especially not being able to be engaged in my life, but I think it was the constant pain that I just couldn't stand any longer. Crapping the pants sounds pretty rough too, though.

If you've tried 5ASA varieties, diet, supplements, probiotics, LDN, and immunosuppressants, there's not much left out there. I mean, there will always be endless new supplements and tricks to try, but none that would be very effective with drug-resistant pancolitis. (A lot of the alternative/complimentary/holistic treatments seem to work better for mild/moderate cases but not very effective for severe pancolitis.) I'm thinking at this point that surgery might be the best option for you as well. My only question/concern, and I hate to even bring it up.... But if you're having such issues with continence before surgery and you choose the j-pouch, would that cause you to be more likely to fall into that small percentage of people who have continence issues for a while after surgery? I have no idea if there is any correlation, but it's definitely something I'd ask at a surgical consult. I'm kind of banking on my lack of continence issues to keep me in the clear (for the most part) post-op.

Good luck. I'm thinking of ya... I know whatever happens you'll make the right choice for you. Surgery is a big decision and something you have to be sure about.

I know I haven't had my takedown yet, but as of today I can tell you that as tough of a decision as it was, once I made it I never looked back and haven't regretted it for a second. (I might sound different a week from now, however, LOL. We'll see...!)

no no...I don't want to get a transfusion because I'm scared of tainted blood. I know, I know it's checked, except I don't want to take the chance unless I'm in dire need.

Also, the Cortifoam is WAAAY easier to retain than the liquid enemas. You can't even really feel it once it's in if I remember right... the foam doesn't want to drip out - since it's all light and fluffy it just hangs out up there. But like I said before, success with rectals will be limited with pancolitis.

Yeah, I sent my refferal to the people in charge of the study. The only issue I have with this, is the trial is being held in Hamilton Ontario. I'm in Ottawa, it's 6 hours away.

The trial is 1 transplant per week for 6 weeks. If I get the placebo for 6 weeks, I will then receive the real stuff for another 6 weeks.

So potentially 12 weeks. That's a crap load of hours back and forth man. If I take the plane.....it probably going to set me back close to 10k this nonsense 1 per week.

Shiiiiit, I'd pay xxxxxxx times more than 10k if I'm going for a real cure. But paying 10k for trying a treatment annoys me. I'm still going to go, it's in January, I'M NOT SURE HOW IM GOING TO GO THERE ...HEHE....maybe with a star trek transporter.