Where to go from here?

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arncap
New Member


Date Joined Jan 2017
Total Posts : 3
   Posted 12/25/2017 11:18 PM (GMT -7)   
Happy holidays all. Have a great holiday season wherever you are reading this from!

Further to a post or two I made back in the spring of this year... I had my j-pouch surgery 17.5 years ago. I have never really noticed a huge difference in my health since then with the exception of the regular 'pouchitis' or so it was diagnosed. Whatever causes my inflammation to happen -- and the precise location(s) has not really determined very well over the years. Bottom line is that even though I have been taking a total of 360mg of codeine daily since January of 2001, I still have a ton more bowel movements daily than the average citizen. How many?? Lots. Do I count? NO. Some days are a lot worse than others.

Over the past year and a half I started seeing a new GI as my family and I re-located to a different province. After doing a couple of scopes over several months, he determined that I had Crohn's disease, not Ulcerative Colitis as I was originally diagnosed. He claims that my inflammation is not restricted to the large intestine and can also be seen in other parts of my digestive tract. Did I always have Crohn's - but it was initially misdiagnosed? Or did my UC later develop into Crohn's? No idea...

I have not noticed much difference in my health over the years since my 2000 surgery. I still struggle daily with the number of bowel movements etc. My new doctor felt that it was important to try treating my condition because he felt that continuing along the same path I have been -- with a diseased colon -- was a dangerous thing to do. So, I agreed to try Humira over a year ago. Unfortunately, the Humira didn't do anything at all for me. It was later determined -- without explanation -- that only a tiny percentage of the Humira was entering my bloodstream via my self-injections. So, after about 4 months, the doctor had me stop the Humira. He then recommended Remicade, which I have yet to try. Since we re-located again this past summer, I decided to wait until getting settled. I have still not gotten around to seeking medical assistance on this matter. It also appears as though my family and I will be re-locating once again at some point in 2018.

I am not sure what to do. Obviously I have learned to live with my condition and with lots of codeine daily. So, I am not sure if I want to try an intravenous drug that I honestly have little confidence in. Can anyone give me some 'patient advice' on this issue? Obviously, I could go see another GI but I am not sure he/she knows better than some patients who have tried Remicade themselves... Sometimes, the patient knows best.

Dale B
Regular Member


Date Joined Mar 2013
Total Posts : 63
   Posted 12/26/2017 4:24 AM (GMT -7)   
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.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1796
   Posted 12/26/2017 5:15 AM (GMT -7)   
I too would highly recommend you give Remicade a try. Remicade has the best track record of all the anti-TNF's. Stelera is having rivalling success as well. You shouldn't continue to use Codeine. It's not meant for continued pain management. Also, you don't want to wait until your condition worsens to the point that it gets expremely difficult to get things back under control. You really need to be proactive now. Good Luck, I hope things improve soon.

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1839
   Posted 12/26/2017 5:50 AM (GMT -7)   
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.
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15525
   Posted 12/26/2017 6:40 AM (GMT -7)   
Arncap, just my 2 cents, either go on Remicade or Entyvio. My gi always added Imuran to Remicade & Humira. He said it helped enhance the benefits of the medication & help with not developing antibodies. I think the gi that recommended this to you was a knowledgeable dr that cared about his patients.

My thoughts are this, get something lined up now. If you are procrastinating about going on a bio out of fear, we have all been there. Most of us had our reservations at the first thought. I did not hesitate, I was very ill & had reached the point I would have tried anything out of desperation. I was messed around for 2 years after a resection by 4 different gi's & finally found an excellent dr that knew something.

I am not sure where you are located but having access to pain medication has become severely restrictive & problematic not only in the US but in other countries.

You speak of relocating a couple of times. I would think getting treatment started now would help you secure care easier if you relocate again in 2018.
Susie
Moderator in Chronic Pain & Psoriasis Forums

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3358
   Posted 12/26/2017 10:01 AM (GMT -7)   
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.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1018
   Posted 12/27/2017 7:52 PM (GMT -7)   
I also strongly recommend remicade. I've been on it for two years. It's allowed my to regain my life. It's amazing what we cope with, don't even realize we are barely getting by and what we are comprising. ( fear of the drug was one of several reasons why I put off taking biologics) Living on pain meds will just mask the situation. There is a lot going on with IBD that goes beyond the outward symptoms that can be covered up temporarily. Without going on maintenance meds you are open to developing major complications ( which having gone through numerous ones before starting the biologics I can say it is well worth it to prevent them at all costs) and raising your chances of getting colon cancer that is caused by uncontrolled disease. By starting meds now your doctor should be able to help coordinate your care transition in your new location.

arncap
New Member


Date Joined Jan 2017
Total Posts : 3
   Posted 1/2/2018 5:15 PM (GMT -7)   
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...

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1796
   Posted 1/3/2018 3:39 AM (GMT -7)   
It sounds like you're very concerned with the "what if's". When dealing with what if's you really need to consider the probabilities. If you choose not to try Remicade, or another anti-TNF to control your disease, then the probabilities are very high that the disease will get much worse, and do some serious damage. There are many newer anti-TNF's now and more coming out. You owe it to yourself to at least try to control your disease.

I don't mean to sound harsh, but sometimes we need to be hit square in the nose, to see things more clearly. I would simply ask you, if you choose not to try to control your symptoms medically, what do you think will happen?

Hope you're feeling better soon. Good Luck with your next course of treatment.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15525
   Posted 1/3/2018 6:51 AM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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