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Ulcerative Colitis
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Posted 10/29/2012 11:03 PM (GMT 0)
So, I have mild inflammation in my rectum, nothing further. He has bumped my diagnosis to Pancolitis, from LS.
Two-and-a-half years of misleading me. Wonderful. I can't wait to see a doctor at Mt Sinai.

He also wants me to start taking my Pentasa, even though he says that if I'm intolerant of the drug it could put me in a flare. Yes, because that what I need before a surgery. I understand why though. My GP thinks otherwise. Start it after so we don't rock the boat.

He also states I should go on biologics - I've told him 7 times no. However, he will continue to push for it. I'd rather rip out my colon myself.

I'm watching over my diet and bm's carefully every day, and nothing has really changed.

Does anyone else have a rather strong urge to smash their GI's face in, or is it just me?
Posted 10/29/2012 11:23 PM (GMT 0)
No, but I would go on biologics if I were you. I had a similar stance on the topic before, it changed with time. If fact, lets say that for you a biologic is wonder drug and puts you on solid remission. If that happens, your ideas will change...you'll see. Or maybe you will never see since you don't want to try a biologic. Oh well. To each his own.
Posted 10/29/2012 11:38 PM (GMT 0)
Given that Imuran plummeted my wbc, why would I bother with biologics?

I can't afford it and I don't see the benefits whatsoever.
Posted 10/29/2012 11:42 PM (GMT 0)

Sibby said...
Given that Imuran plummeted my wbc, why would I bother with biologics?

I can't afford it and I don't see the benefits whatsoever.

You're in Canada, I'm in Canada too. It should be free for you.

At the infusion place there's a few people that don't work at all and are on Remicade. I asked them and they said it gets paid for. Some of them love the drug, man. They go on and on and say:..Omg...I'm so happy this drug exists, it gave me my life back. I can now do my walks...

For me it doesn't work that well, but for some it's the shiznits.

You know the saying...don't knock it until you try it. I can knock it cause it doesn't work that well for me..boooo.
Posted 10/30/2012 12:05 AM (GMT 0)
somedude, what were your symptoms like before you started remicade? if it doesn't help you that much, why stay on it?
Posted 10/30/2012 12:19 AM (GMT 0)

bananagirl said...
somedude, what were your symptoms like before you started remicade? if it doesn't help you that much, why stay on it?

They were worse than before. With remicade, my colon healed half way. It's possible it can take a while for me to heal completely. More than 15 infusions. I now have formed stool...

What can I do....should I stop? It's difficult to make that decision. My options are very limited right now, my friend.
Posted 10/30/2012 5:30 AM (GMT 0)
Are Q and I the only ones who don't want to go on biologics? Yikes, feels like it.
Posted 10/30/2012 6:56 AM (GMT 0)
I am from Canada too. Sibby i also share the same urge towards my GI. I have also told my GI repeatedly that I will not go on biologicals and he always gets angry with me.
My GI has put me on Imuran like yourself and ever since I have been on this drug for a year it has literally done more harm than good. I have new symptoms that are much worse than UC and he keeps telling me to stay on Imuran.

I was just diagnosed two years ago this November when I was 23 so I have only had one GI. However, I recently got a new GI at the Inflammatory Bowel Disease (IBD) Clinic at the McMaster University Medical Centre and I have my first appointment at the end of the year. Everyone tells me that this is the good place to go.

I confirm what SomeDude said in regards to paying. As a result of the UC and other imuran side affects I cannot work so I applied for the The Ontario Drug Benefit and as a result I do not pay for any of my medication. I don’t think Humira is covered yet but will probably be soon because the FDA approved it as a treatment for UC back in September.
Posted 10/30/2012 7:00 AM (GMT 0)
Sibby I can relate a bit as I'm not ready mentally to go for example on Prednisone.
I will try everything with the Asacol and enemas long term. But it works alright for me. Im not saying it gave me relief in a week. It was a long process but it sure makes my life easier.

I can do my business in the morning and be all right the rest of the day. I didn't have a surprise bm for a while now.

I'm a very stubborn girl and am not ready for other meds. However you may not be ready mentally but maybe you are physically. And to make both connect can be hard. On top of that I'm wondering at which point you really don't want them or is it that your doctor is so annoying you at the fact you already said no 7 times that you are ready to say no all the time!

Have another advice. You need to have another opinion at least to explain the situation and options. And if you still refuse the biologics how about what's next. You talked about surgery .. are you meant to have your colon removed???
Posted 10/30/2012 7:51 AM (GMT 0)
Biologics gave me back my life. I would consider it.
Posted 10/30/2012 12:18 PM (GMT 0)
I wouldn't mess with Pentasa if the mesalamine drugs have caused issues in the past. And if you'd rather have a colectomy than use the biologic drugs, that's entirely your choice. I probably will try them if it comes to that, but I completely understand why some would rather not.
Posted 10/30/2012 4:53 PM (GMT 0)
Biologics will always be off the table. I'm willing to try LDN. Have a prescription. And I'll wait half a year to see if it truly works. If not, I don't know.

Bat, I'm glad you're going there. Heard some good news coming out from there. My parent has coverage through the province, but I would have to go through the benefit plan. Have you been on that?

Tourn, lord we're stubborn. Pred scares me, and I had a bad experience with it in the past before UC. I'm definitely looking for an open-minded doctor and maybe I'll find that at the hospital. If not, I have a lot of decisions to make soon.

Fruit, there's so much health issues in my family, and some I don't know on my father's side, that it scares me to go on Remi or Humira. I don't want to take that chance. But I understand why people would go on them.
Posted 10/30/2012 5:02 PM (GMT 0)
i hope you find a good GI at mount sinai. I don't know what hell I would be in if I didn't get referred there. how long have you been flaring or at least been diagnosed with the rectum inflammation that turned into pancolitis?
Posted 10/30/2012 5:47 PM (GMT 0)
I was originally diagnosed 2010 with left sided UC. According to my doctor, he told me I had pancolitis. Imuran put me in remission for two years then it tanked my wbc starting of this year. He took me off this fall.
I had no inflammation until now. Only mild in the rectum. No symptoms either. Been watching my diet also.


How is it there, dont?
Posted 10/30/2012 9:10 PM (GMT 0)
I like it there. Although, I'm a bit biased because I feel like I was not being treated properly at Scope Clinic nor Brampton Civic Hospital. My doctor at Mt. Sinai is Dr. Greenberg and he's very good. I was seen by him when my proctitis was very bad. I'm still not in remission but I do believe that I'm better off going to Mt. Sinai than Brampton Civic Hospital.
Posted 10/31/2012 1:06 AM (GMT 0)
That's good to know what's out there. I've been going to a town GI since dx.
Posted 10/31/2012 2:43 AM (GMT 0)
batman, look at what's going on at McMasters:

http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/

You're in good hands.

I'm pretty sure this is the trial I made an attempt to get in, my GI didn't even give me the time of day.

I don't understand why a doctor would get mad at you for not wanting a treatment. Afterall, they readily admit they don't know what causes the disease and they don't know what will work. They shouldn't be angry if you don't want to play guinea pig.
Posted 10/31/2012 5:18 AM (GMT 0)
Sibby i am on the Ontario Drug Benefit plan. I was diagnosed with UC in 2010 literally 4 months after I graduated University. Because I graduated I was no longer eligible to be covered under my parents thats why is am on the Ontario Drug Benefit plan. Also because I can’t work.

Sibby what was your dosage on Imuran and did you get off it cold turkey or gradually? My current GI just ignores this question when I ask him or gets angry.

Lodi that’s an interesting link on fecal transplants. However, It’s not the type of treatment method I am currently looking for though I have another idea of type of treatment that I would like to pursue. The doctor mentioned in the article Dr. Surette, is not the doctor I have an appointment with. My doctor is the Head, Clinical Research for the Division of Gastroenterology at McMaster so I am hoping he has more to offer than just fecal transplants.
Posted 10/31/2012 5:26 PM (GMT 0)
Batman, that's convenient with you dx. Lord, I would have loved that. I got symptoms and dx in my first year of college. Wanted to cry and dig a deep, dark hole somewhere and just stay there.

I was on 100mg for at least a year before to lowered my wbc. I was taken off of it cold turkey when my wbc was 2.8. Then I went back on it at 50mg then it lowered my wbc again, so I was taken off permanently.
See, I don't know if I am intolerant of 5asa because I was only on salofalk for at least a month (I think). Not sure if it was just a progression of the disease or if it was intolerant.

My doctor listens, forgets, doesn't record what I say then he accuses me of not listening to him.


I have heard that you should have FT at least two years after dx to have the most effectiveness of the procedure. I don't know if I read it hear, or I saw it somewhere else. Who knows, maybe that's just a guideline.
Posted 11/1/2012 10:02 AM (GMT 0)
I had my first sign of UC in my last year of University however I did not take it seriously because it was controllable and went away after a month. I believe my UC started due to prior use of strong antibiotics like Levaquin for a four month period.

After my first sign of UC my family doctor said go see a GI and I was wait listed for 8-10 months to see my GI. During that time I was very healthy. When I finally got to see my GI he said I should have a colonoscopy so I did. When I woke up from the colonoscopy I woke up with a piece of paper on my chest that said you have UC and here is a prescription for Salofalk pills. I didn’t think it was necessary to take the pills because up until that point I felt great. I see my GI two weeks later and he gets mad that I didn’t take the pills and I should take the pills. So I take the pills and literally two weeks later I am really sick. The day before Christmas my GI puts me on prednisone because the UC is going nuts and i haven’t really be in remission since I first took the Salofalk pills on November 16 2010.

Sibby In regards to what said you about “My doctor listens, forgets, doesn't record what I say then he accuses me of not listening to him.” What I did recently was get access to all my medical reports since I have had UC. Basically I have read them over repeatedly and have caught my GI either lying or making mistakes. My parents have seen this as well and that is why I am now going to another GI.
Also thanks for answering the Imuran question. Every time I ask this question nobody ever gives me a straight answer. Currently I am on 200mg of Imuran but I will be attempting to get off it once I get access to a certain type of medication.
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