Where to go from here?

There are certainly people here who have way more knowledge and experience than I do but I would suggest giving Remicade a try. I was on Humira for nine months and it did nothing for me. Have been on Remicade since July and it has helped me quite a bit. I still have some problems but way better than when I was on Humira.

Personally, I would go for the remicade or one of the newer biologics out there. Remicade got my crohns under control about 12 years ago after being in an uncontrolled flair for way too long. And not being on any maintenance meds since the late 80's. Currently I'm on Entyvio infusions every 8 weeks and it's working great. I still have some issues with a couple of strictures caused by scar tissue but my quality of life if much better. And my last scope showed endoscopic remission --- haven't heard that in decades!

Did they have you on methotrexate or anything along with the Humira? Just curious.

I would strongly suggest that you start on Remicade. I've been on it for 6 years and it has been a miracle drug for me. The slight risks of Remicade far outweigh the guarantee of major problems later.

UC and Crohn's are really hard to distinguish between, but they are basically the same thing, just depends on location. I was originally misdiagnosed as well, but it didn't change all that much to change the diagnosis.

Being on lots of codeine is going to do a lot more harm than good. Pain meds are NOT good on your GI tract at all. Your care has been all kinds of messed up.

Thank you all very much for the responses.

To explain the codeine... My surgery was back in June of 2000. I had my total colectomy done in only 1 step. Initially, I was suppose to have the surgery in April of that year. For the previous 7 years or so, I had been weaning on and off of Prednisone (much more on than off). My doctor had said he could attempt to do the operation in one step -- but only if I were off the Prednisone prior to the surgery date for at least a few weeks. He felt that being on steroids would require 'healing time' with an ostomy prior to re-connecting the j-pouch. So, as the operation date neared, I had been weaning off the Prednisone and was getting closer to being off it. So, I told my doctor that I wanted to postpone the surgery as my UC was under better control during the weaning process. He wasn't very happy about it to say the least, however, I got re-scheduled for the middle of June. He made no guarantees, but said he would attempt a one-step j-pouch if it were possible. I woke up after the surgery without an ostomy and with the j-pouch connected. But it was a rough few weeks. I remember well going through some really tough times in the hospital and again after being discharged. I went through a few days in hospital following the surgery unable to have a bowel movement. It was scary. I don't remember what the cause of that was. Finally, I ended up dealing with 30 plus bouts of diarrhea daily, and little control while sleeping etc. I went on metamucil powder and / or ate the metamucil cookies for months. The metamucil thickened my stool but didn't decrease the very high volume of bowel movements daily. Especially when they were watery diarrhea type movements, my ass felt like it was on fire and was an all-day nightmare. Every time I ate food, I dreaded the consequences to follow...

So, in January of 2001, after trying several different options, I asked my doctor if I could try codeine because it had worked to some extent prior to my surgery my suffering from UC. During rough times, it slowed my system and reduced bowel movements considerably. It also helped with pain in my anus area from having so many BMs daily and nightly. He didn't have a problem prescribing the dosage I needed. By taking 120mg 3 times per day (spread out about every 8 hours), it helped to regulate my system and I got to a point where I could function well enough to lead a normal life - albeit still having as many as 15 or more BMs a lot of days. I have been on that same dosage of codeine ever since - 360mg per day. My body is used to it, or I should say, addicted to it.

I got through lots of rough patches through the years, most likely 'pouchitis' I was told. Cipro or other meds never seemed to help. Each time I went through additional irritation, toughing it out was the only way. Eventually, those 'flareups' seemed to go away on their own after a few rougher than usual days.
I have seen a few different doctors through the years but was basically on 'auto-pilot' using the codeine to control it and feed my addiction. It worked so to speak. I spent 8.5 years in Asia during which time I never had a whole lot of medical care. I worked hard around the clock and was able to do everything I needed to do. I took my codeine religiously and powered through. Although never counting, on an average day I probably had 10-14 BMs. Rougher days were worse...

Been back in Canada since 2011. Several months ago, I went to see a new GI. After some scopes and tests, he told me that I had Crohn's. He put me on Humira, but after 4 months of 0 benefit and some blood work, it was revealed that only a tiny amount at best had been entering my bloodstream from the injections. Remicade was suggested, but we re-located in the summer and I was hesitant to start on it for that and other reasons.

I am not confident that Remicade or any other drug will make a difference. Why? I just don't have confidence as I have tried so many different things. Dumping the codeine was not recommended by doctors because it controls my digestive system and I am dependent on it. I am not sure what to do quite frankly. I have been dealing with this way of life for so many years. I know, why not try it as it can't hurt? Valid point so maybe I should try it. But it has dangers and how long a time to I have to give it to see if there will be any benefit? Will I become dependent on Remicade as well? Now, in addition to codeine, I'll have another drug pumping through my system... What if it works? Do I stay on it indefinitely? What if it doesn't work?

If my latest diagnosis of Crohn's is accurate, was I misdiagnosed prior to my surgery in 2000? Or did my UC become Crohn's some time following my surgery? My symptoms have been fairly consistent for the past 17 years following my surgery.

Thanks for taking the time to read this long boring post...

I understand the codeine thing better now, I had an idea it was to help slow things down. Even with your condition being as it is, I would still be in fear of running into a dr along the way that would not be willing to rx the codeine at that dosage. The so called opioid crisis has hit in Canada, in fact I read an article they adopted the guidelines established by the CDC here in the states. What would you do if you moved & could not have access to the codeine? Each dr has their prescribing practices & they do not have to give what a prior dr rx'd. This would scare me.

Truthfully you have nothing to lose by trying Remicade or any of the newer ones. I would worry about what damage is being done being on nothing. Sure everyone gets scared trying some of these meds but its about quality of life. The side effects listed are required by the FDA. Codeine is no different than any medication, they all come with potential side effects. The what if's 73monte is talking about are not productive, you may very well reach a point when codeine stops working. We have no guarantees in this life.

Take care.