update-hospital

well, blood in stool, no remission in 2 years, I'm doing true SCD diet now, no carbs. Before I was doing SCD but included the carbs such as rice, potatoes.

I've tried remicade, it doesn't do the trick, I think I'm on my 14th infusion, over a year on it. I'm scheduled to try Humira, meanwhile, Im still on the diet, trying this and that...

I don't know how this is going to be played out but we will see, the saga will end one way or another, I can't continue 10 years like this.

I'm sick and tired of this. My blood levels have dropped, I will have to check them again in 2 weeks. Hopefully, they stabilised. I had a blood transfusion last year, before I went on remicade.

I dont want surgery, well actually let me rephrase, I don't want a bag, I'm not scared of surgery.

F this bullcrap situatiion, it's facking unreal man. I can't find a way to get into remission. You have to be kidding me.

"yeah it's insane man. I wish I was the type of person that responded well and stayed in remission with mesalamines..."

lol @ remission with just mesalamines. that's easy mode.

no lol. I cut everything. Actually dairy I cut that a long time ago.

Diet doesn't seem to have any effect, but as stubborn this disease is, I am stubborn on the diet. I am gluten free dairy free for over a year, now, carb free for over a month. Nothing....it doesn't want to do anything.

5asa don't want to do anything, remicade doesn't want to do anything, diets don't want to do anything, LDN neither....I'll see where this goes and day by day, and when the end comes whichever end it may be, it will be.

Yeah, and I also tried the sunflower and spinach. Pretty easy cause I like spinach, that didn't do nothing.

I suspect that I have some unknown pathogen that can be killed by antibiotics, but Im too scared on going on anitbiotics and which ones, I don't want to get c diff.

there's no way to explain this to a GI.

Also, I already did the most expensive stool tests, I participated on the fecal trial in Hamilton On....this disease won't budge.

As far as diet is concerned, this is the end. I am not cutting anything more, I am fed up with this. I will stay the course for 3 months or more and then re-evaluate.

I am eating what the small SCD book says. Vegetables, meat, eggs from time to time, more vegetables steamed and stuff...rince and repeat. Everything is cooked by my mother.

Lol you're asking weird questions soystud, aren't you exactly on the same diet?!?!

I've lost some weight (which I can't afford to lose) about 5 pounds since I cut the carbs....it sucks. But it's ok, now it's a waiting game. One day I'll get fed up and I see what's up but for now I go with the flow.

Heh, my mom wants me to have surgery, she's tired of seeing me suffer.   Im try to grind this till the end.

I hope you're feeling better each day canadagal!

And I'll make sure there's no more hijacking of your thread.

Team Canada :p!

sorry canadagal! maybe if you're in toronto, I can say sorry in person hehe. get well soon!

Canadagal, when is your second remicade infusion, what dose? If you don't respond to it, up the dose to MAX!! MAX POWER!


Soystud... lololol pow survivor, yeah me too. My normal weight is 150, im 126-128 now. At my heaviest before UC, I was 165, overweight a bit. My mom always cooked for me since little. She's health concious.

well... still hovering on day to day basis...

my crp is generally dropping, but still reading which means inflamation...
my hemoglobin is dropping (not good) as I'm still loosing too much blood....
my white blood cells are hovering around 12 but that could be the steroids...

I go anywhere from 2-6x a day --- full liquid and blood! (sorry tmi)

they wont let me out until stool firms up and bleeding stops.

If no change by Friday, mega dose emergency Remicade infusion as one last try...
after that, seems I'm starting to run out of options... \

this is sooo frustrating!!!

mega dose would be Remicade..

WE have established that steroids are not doing a thing positive for me.. we droped to oral 40.. just need to do safe wean off..... but we have ruled steroids out as an option for me for good! 3 yrs ago i was steroid dependent, not seems they do squat for symptoms.... so I will be off the steroid merry-go-round for good.

well day 15 here.. got 2 departments arguing over whether I should be inpatient or out patient.

My level started going in wrong direction again... not by alot but still....

bloody liquide bm's continue but vary from day to day. 3-6-2-5-today 2 so far...

going to try and do a short sig. tomorrow afternoon to ensure things still look about the same or better.. and then.. 2nd dose Remi on Friday...

It is not standard protocol but it is something that is done, and since I'm not in gastro unit, this ward doesnt know what to do with me...

It took me 2 1/2 months to get care for this flare so I hesitate to push to get released... but this is getting a bit ridiculouse... I'd be mending better at home while waiting for the next procedures...

also got be back on IV steroids as GI says absorbed better... although he also says not responding to them...

all very confusing and frustrating...

GRrrrrr...yet another GI up the ladder... yet another plan... well generally same plan but pushed back another day...

another partial scope ( no prep) just to see difference of 2 weeks - and then decision on rescue dose of REmi....

couldn't get a gi to see me for 2 1/2 months... and now that I've gotten this bad... i see 6 different GI all with their own opinion and game plan....

all of them throwing around surgery option as a quick fix.... I don't want surgery... not unless I'm in serious trouble of dying..... come on!!!

I got my 8th iv placed this afternoon... they clog up after a few days. ANd i have rolling veins so they have to poke around and chase them before getting a good one in.

My arms look like a battle field... they are probably looking worse than my colon these days...

Fun stuff... but ain't throwing in the towel yet! yeah the hierarchy is ridiculous... students, residents, fellows, attendings... and only seeing them maybe 1 or 2 times a day... things just go slooooooowwwww.