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Running out of Options

K

katiesue1506

So... had my consult with the new doctor today to discuss the future and my colonoscopy I recently had. Basically he said that my disease is now classified as severe Crohn's and that were we to have to go the surgery route, he would have to take the whole colon and part of the small bowel. FRIK!

He also said that it was "impressive" at how bad my bowels were considering the high dose of Remicade I was on. Gee... coolio.

Basically I start Pred tomorrow (oh boy!) and continue on this Imuran I've been taking for a month. I also JUST finished my four Humira loading doses. If anyone is considering starting Humira for a second time like me, no- the loading doses don't feel any better the second time around.

So Imuran, Humira, and Prednisone... if this doesn't work my doc wants me to STRONGLY consider Tysabri or else I will be bagged for life.

Such an uplifting post, huh? I know... I'm full of sunshine and daisies.

I'm sad.
 
D Bergy

D Bergy

I am sorry you are in such a bad predicament. I guess I would go for the Tysabri since you basically have no choice.

It is either that or the experimental route. Neither has any guarantees.

I hope you improve soon.

Dan
 
farm

farm

Captain Insaneo
I'm so sorry to hear about this. I sincerely hope that your meds will kick in and beat the $hit out of this Crohn's beast for you!
I wish you the very best!!
 
Agent X20

Agent X20

Location
West Yorkshire, UK
Sorry to hear that. I hate it when doctors get excited about the implications of your disease, when from your point of view it's just bad news!
We're all thinking of you and hope you take a turn for the better!
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
Sorry you're going through such crap KatieSue. Hopefully the Imuran will kick in for you, it is said to take 3 months. Benson was looking at surgery too I think, and then his Imuran finally started working. Remind us why you came off of the Humira in the first place? It quit? Maybe you can keep alternating Humira and Remi as they get weaker? If the Humira lasts a while this time, maybe that new one will be out of trial? Shmooda is trialing it right now. Also, if none of this stuff works, maybe try the elemental or modulen or whatever it is over here that Soup and a few others have done. The predigested complete liquid diet. As much as that must suck, it's better than taking out your whole insides.
Hope the pred help kick everything else into high gear for you really soon.
 
K

katiesue1506

Thanks guys

@ D Bergy: He actually said he wouldn't be putting me in any of his experimental trials because I'm basically too far gone for that.

@ RHOV: We talked about Cimzia and he said he's not ever had a patient whose failed Remicade and Humira ever do well on Cimzia too. And he doesn't believe in LDN because all of his test trials he did with it produced no results.

@ MBH: Yeah I was kinda curious why he didn't even mention elemental... he never has, probably something he doesn't believe in, but that's my speculation.

Why did I stop Humira... same reason as why I stopped the Remicade the first time... no real reason. I think I stopped it temporarily for antibiotic use and then I went to LDN.

I'm hoping this three combo of meds kicks its butt... because I really don't wanna try Tysabri as of this moment. He even said in my appointment "would you rather have a 2/3rds chance of getting better with Tysabri even though it has a 1 in 8000 risk of a brain infection or would you rather be bagged?" Umm. Bagged please? But my thinking on that may change if I exhaust my current route. He did say something worth mentioning about the PML... he said that all of the cases have been in patients with MS (theyve use this drug on them longer) and that its hard to catch the infection because these patients already experience tingling in hands, strange head movement and general mobile difficulties that would stand out as "weird" in a Crohn's patient but "normal" in an MS patient.

He's only treated 15 people with it in his office and 2/3rds are getting better... 10. Still scares me quite a bit.

I'm not one for showing emotions but I teared up at his office a bit a couple of times... my mom was there though to kinda help me along when I couldn't answer his questions.

Riding the Predtrain in about an hour... hopefully it gives me that lovely energy... I could really use it.
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
Aww, yay for your mom being there.
And interesting thoughts about only the MS patients getting the PML. I wonder what the exact numbers are? If it was 100% MS and 0 crohn's then it might be worth a shot. But what is done if they do catch the infection early? Still scary to think of. I wouldn't want ot be the FIRST one with Crohn's that it happened to.

What about this stuff? Tacrolimus/FK506
http://www.crohnsforum.com/showthread.php?t=6375
 
K

katiesue1506

He said once they know you have it, they stop infusions and then it gets killed off naturally by your immune system when its built back up, but he also said it can cause irreversible brain damage because it basically causes lumps to form in the brain.
 
D Bergy

D Bergy

How about the Aloe Vera method in the other thread? Low risk, and I can't really see any downside other than it may not work. And any treatment "may not work".

Dan
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
D Bergy said:
How about the Aloe Vera method in the other thread?
Click to expand...
I think Kim was telling me that she was using Aloe for her IBS, but possibly it wasn't good for Crohn's cuz of bleeding or something?? Don't quote me on any of what I just said, just check it out. Or maybe she can clarify if she sees this.
 
K

katiesue1506

Thanks for the support guys...

I thought I'd update... I've almost been on Pred (40mg) for a week now and I'm feeling a lot better. I'm eating again and I actually am only going to the bathroom in the morning (one or two times) and its mostly formed stool. I've also noticed that I'm absorbing my iron pills as my stool is no longer green.

I'm also not having cramping or spasms anymore and I've got a lot more energy. I'm just hoping this along with the Imuran and Humira help me heal up. For now I have high hopes!
 
Jerman

Jerman

Hi KatieSue,

So sorry to hear that you were going through such a rough time. I am glad to hear that things are improving a bit for you, hope you continue to feel better.
 
G

Guest1

Jerman said:
Hi KatieSue,

So sorry to hear that you were going through such a rough time. I am glad to hear that things are improving a bit for you, hope you continue to feel better.
Click to expand...
Ditto!!!
 
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