And now they dont know how to treat me..

[lookame]

So last Thurs I go to see my GI. He was having a bad day and really annoyed wih everything...especially me. Apparently remicaid just aint cutting it...and the combination therapy of 4pills lialda, 50mgs 6mp and 5mgs per kilo remicaid just isn;t doing it either. I mean...it is until 2 weeks prior to my next infusion when the blood shows up again. He sat there for several minutes rubbing his head in confusion. He then said he's going to bump my remicaid infusions up to 10mgs per kilo of remicaid. *sigh* He then goes on to say it's strange because ulcerative colitis bleeds not crohns(I have to tell him constantly that it always appreas as uc but biopsies and serology 7 shows crohns) then he rubs his head some more than says ok this is what we're going to do...do a new serology 7 blood test and determin which one(if possible) I have then see how aggressive it is. Stay on all my other meds bump up remicaid and see how things go. If I still have trouble I'll need anouther colonoscopy...fun stuff.

 

[PsychoJane]

:S This is for sure annoying when the doctor does not seem to know what is happening...

All I can say is: yes, Crohn can bleed or it is a manifestation of both crohn and UC together which seems like something they can hardly cut clear.

They first diagnosed me with UC then changed their mind to granulomatous undetermined colitis (ie potential crohn). Well, it's now clearly accepted that I have crohn, because I now have problems with my ileum but from the time it was strictly in my colon, it was acting up as if it were UC. It would bleed insanely. The surgeon said it looked in no way like a Crohn's colon but biopsies would show that's what it was. It seems there are grey zones that they still can't determine... My theory is that maybe I had both diseases... Could it be the same with you? I don't wish that for you, but maybe that could explain certain things?

Hopefully your GI will sort all this out and you will feel better from the remicade dose increase!

 

[chrisnsteph1022]

Wow, I could've basically written that. On Remi, imuran, lialda. Not cutting it. Saw GI last week and he bumped me up to 10mg/kg for my next infusion (6/22). And he was very frustrated with me. Like it's MY fault I'm not getting better?? Hell, I wish I could make myself better. Only difference between our appointments is that if I don't get better on the higher dose, he's giving up. Sending me to another GI. He doesn't know what else to do for me.

My symptoms aren't going away at all. Nothing changed from week 7-8 to week 1, after the infusion. Still going 5-8 times a day with pain. Now, a week away from my infusion, I'm up to 10-15 times a day. So we both may need to move our infusions to every 6 weeks.

 

[chrisnsteph1022]

Oh, and my diagnosis has been Crohn's from day 1 (9 years ago) and I bleed. It was never a question of UC because my TI was affected.

 

[littlemissh]

To suggest that you only bleed in UC not crohn's is bizarre. People with crohn's affecting the colon commonly bleed. Small bowel crohn's can also cause bleeding though this is less common.

 

[Keepingfaith]

Your GI sounds uneducated in the bleeding part. Its possible your disease could spread to the colon. People with colonic disease bleed more. I bleed all the time with my Crohn's. I have it from mouth to stomach & ileum to rectum.

It isn't the end of the world if Remicade isn't working. I was diagnosed in October & have already failed Remicade, Humira, apriso, asacol & so many other medications. My disease is too severe for Imuran/6mp/Methotrexate. I've lost over 90 pounds in a little over a year so I understand the frustration. I've been in the hospital for a week now. My last hospital stay was in November & I was in there for over a month. Sometimes it helps to just get admitted to get your medications straightened out. My GI is doing this now & I'm due to start Cimzia once my infection clears up. I've had my 7th colonoscopy for the past year & a half in April & sometimes it needs to be done that often so they can see how fast the disease is progressing.

I hope you feel better & don't give up! There are always options. I was on 60mg/kilo at my max dose & I believe I had it done every 6 weeks? I got off of it after a few doses do to drug induced Lupus. Has he thought about humping up your 6MP in addition to Remicade? Hugs!! It'll get better!

 

[chrisnsteph1022]

I was on 60mg/kilo at my max dose & I believe I had it done every 6 weeks?

:ywow: I have never heard of anything over 10mg/kg.

 

[Keepingfaith]

Eek! Stupid IPad! *10* Mg! Thanks for pointing that out

 

[lookame]

Hey christoph I've been keeping up with you somewhat and it seems we seem to be having the same type of issues...and at the same time lol.

keepingfaith my GI is very careful when it comes to my 6mp. He doesn;t want to bump it up because I only mederatly metabolize the drug so he doesn;t want to go up any more. He was worried oving me up from 25mgs to 50. He moved me up to get me to a theraputic range and when hat happened he said that's all he'd mess with the 6mp.

Don't get me wrong guys the remicaid has helped a ton...as long as I take all my other medicines daily. I only go downhill at the 6 week mark and then it takes a week after my infusion to normalize out as well. When everything is at it's best I only go once a day, solid, and no blood...but when I'm at my worse I go about 3 times a day but it's mushy and well theres a lot of blood...sometimes it's just deep purple blood clots and I get some stomche cramping. I don;t know if I should accept the bleeding and stop complaigning or if I should strive to get consistantly no bleeding...*sigh*

 

[lookame]

Oh I have considered maybe I have both crohns and colitis which may be why I'm so hard to treat. My GI is considering maybe I have undetermined IBD which I guess can be harder to difficult because it's...well undetermined.

 

[Crohnswife]

That is my husband as well. He was diagnosed UC but the dr would always say usually people dont have this much trouble with uc. they always did the head scratch thing too, sighs. they have changed him to crohns now mainly because of insurance issues with meds. I dont see why your dr is so concerned with which one tho, they are treated the same. both suck and have much the same symptoms. my hubbys crohns is only in his colon and bleeds. hang in there