Seeing the specialist on Tuesday

I don't even really know why I am posting this. Part of it is to rant, and part of it is to seek advice for this upcoming appointment.

I am in Canada, and as such, a specialist appointment can take months to obtain. I have been waiting to see this doctor since July, and I have been marked as "emergent" at the top of his cancellation list since August.

So, Tuesday I see my GI who diagnosed me. I have been flaring since May. Oral steroids bring temporary relief while I am taking them at higher doses (50-40mg, anything lower and I am bleeding again), and it seems the Asacol has stopped working. I was trying enemas, but they were making it worse, and with the addition of percocet for the pain, I have stopped them in fear of lack of retention due to percocet making me too relaxed.

My GP wants me in the hospital, but he doesn't have admission privileges. If I go to the ER there is a real chance I will wait for hours just to be told to go home and take immodium.

I don't know if there are other 5-ASAs I can take. I am terrified of systemics, because of the whole "these might give you cancer" warning, and I cannot afford Humira.

My hair is falling out by the handful. My pain is at a level where they had to give me percocet. My fatigue is extreme... I had to buy a cane to help me get around. I can barely eat due to nausea.

I intend to ask the doctor the following:
- What are the chances this is Crohn's and not Colitis (citing a hematologist appointment I had where my iron was extremely low)
- What are my treatment options at this point? I have been flaring for so long, it needs to be reined in and soon. Hospitalization for bowel rest/quicker testing?
- What are my non-medicinal options to help improve my quality of life? (diet, etc. Keeping in mind I do have multiple chronic conditions)

Because of the side effects last time, I can't be on steroids long term. All of the side effects were horrible, and I can't afford to eat like I was for an extended period of time.

Any other questions I should ask? I feel so wretched all the time right now, I need it to stop.

Odd, I don't know why my signature didn't post in the first post. I have gone back to oral Asacol for the weekend, just to have SOMETHING in my system. I really don't know about blood tests. My GP did some this week in relation to checking for sacroiliitis, but I don't know if he has checked my nutrient levels or anything. I haven't tried a lot (oral asacol, prednisone and asacol enemas... that is it) mostly due to the fact that my GP is not well versed in the disease, and he won't give me anything other than what my GI specialist recommended (to the letter).

I mean, I have been on prednisone for two months pretty much continuously, and my GP didn't check my adrenal function or my thyroid function, or heck even my blood pressure. The last few clinics I have contacted to try and get a new doc have essentially said I am too high maintenance >.< It is all just very bad right now.

Thanks for the advice! I also plan on taking my husband, as he tends to remember the things I forget, and he will remember what the doc says after we leave.

Sorry that you are having problems getting reliable treatment in Canada. There is a major IBD center in Toronto at Mt. Sinai Hospital. Maybe if you're too far away to consult there, you could still find helpful info by looking up their Website (?). If you have pancolitis, you may need a combination of oral med + retention enemas to bring it under control. So you need a gastroenterologist with experience treating IBD to set you in the right direction for effective treatment. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)

It seems like your main symptom is pain. (?) Then you have nausea & sometimes a slight fever. Can you tolerate a low-residue diet? (Boiled rice, toast, banana, applesauce, broiled chicken or fish w/o skin, noodles, baked or boiled potato, farina, no seeds or raw produce) If your sigmoid colon is inflamed steroid retention enemas should help, but you have to use them nightly until symptoms subside then taper off. However, if steroids don't help, then your doctor has to consider 6-MP, Imuran, or the biologics. It's upsetting when one's hair falls out, no question; that tends to happen in the middle of a flare. Be sure to drink plenty of plain water throughout the day because it's important to keep hydrated when one has UC. Good luck with your upcoming appointment. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)

So, had my appointment today.
GI would like to put me back on low dose pred for three weeks, at which time I will have another scope done (yay prep?). Then, based on the scope findings and the blood work he did today, he wants to start me on Imuran.

I am terrified of Imuran, to be honest. It is a carcinogen. And cancer runs in my family. I don't need to add another thing.

Good news, no talk of surgery and he is not all for hospitalization at this point, because they will load me up with meds I don't necessarily need and he says the food is better at home anyways.

what's the extent of your UC location?

Firstly, you weren't on a high enough dosage of the Asacol, and it seems odd your doc would take you off them in favour of the enemas.

Just a typo in your siggie...the enemas are 4g dosage, not 4mg.

while you're on the pred now...are you still on the mesalamine?

q

I asked the doc about scoping while I am flaring. He said he wasn't concerned, but that I only had to drink about half the laxative.

I can't afford the biologics, so it is Imuran/Remicade or nothing. Though after doing some more research and seeing the risks to begin are fairly low, I am a little more calm about Imuran. Lymphoma does not run in my family, though ironically, bowel cancer does -.-

However, a few years ago, I had a mole on my head removed (tested and it was benign) and it is re-pigmenting. So I will be getting that checked before I start anything. My GP is also doing some tests that seem to be centred around the kidneys? I had an xray done, then he asked for creatinine and now I need to go for an abdominal CT. So I will be waiting for all that before I go on Imuran, too.

Right now I am on 25mg Pred and 4.8g Asacol daily (thanks for pointing out the typo in my sig). I am not doing the enemas, as they weren't helping after three weeks. I am still bleeding, though my movements have slowed down considerably and I am not going as much.

My first (and only so far) scope showed inflammation all the way through the left side and across the top. He couldn't go much further than halfway across the top of the large intestine due to inflammation.

Scope on Oct 1, dermatologist appt on Oct 7 and abdominal CT on Oct 18. So many tests >.<