Medication Crossroads

[NCWaves]

Hi All:
I'm new to the forums, but not to Crohn's.
I have been battling Crohn's for the last couple years and prior to that had a lengthy episode 12yrs ago.
This time however the basic steriods and asacol did not do the trick for me.

I first started out taking Pentasa 1000mgs 3X in Dec 2005, with no real significant changes in my condition. After further scopes and scans it was then decided that I try and take Imuran as well. I started out with a heavy dose of 150mgs and now currently take 200mgs per day while still taking the Pentasa. I do also see from time to time small pellets in my stool as the previous thread mentioned. I guess thats why Pentasa may or may not be having any positive effect.

I've been on the Imuran now since October 2007, almost one year, but still having flare ups. In June I hit a few low points with unbearable episodes of pain and discomfort. Doc says it may be time to consider surgery as I do suffer from small bowel obstruction when I have my flare ups. He says there is significant diseases with my latest CT Enterography scan.

Being in the medical field, I am not in favor of surgery, as in my opinion it will ultimately just reappear sometime in the near future.:ybatty:

I've done some more reading and talked it over so more with my doctor in trying out Humira as my next course of treatment. Felt like I was twisting his arm.

I am even considering to try a new GI doctor, just for some new fresh opinions*(Other than surgery) :eek2:

I guess I'm more worried about the side effects of Humira than anything else. I am sorta amazed that I've not one side effect or note of anything to speak of while on 200mgs of Imuran. Again, probably why I still feel as bad as I do, as it is not working.

Oh an by the way, I can't even remember the last time I've had a common cold or flu bug. Although right now I would trade the flu bug for crohn's in a heart beat!

Does anyone have an opinion or some suggestions in to what I should do or try to do next???? I am open to discussion and would appreciate anyone's advice to this disease that we hate so much!! :ymad:

Thanks!

 

[Guest]

hiya NC, & welcome to the forum.

i've never used either Imuran nor Humira, so i can't really advise you on the meds side. but i have had surgery, which gave me 20 years of Crohns-free life. its just come back, last year. i know they always say it can come back, and to be honest i thought it would, a lot sooner than it did, with me. just thought i'd give you my own experience regarding surgery/recurrence.

are you following any kind of diet geared to your symptoms right now?

 

[soupdragon69]

Hiya NC.

Good to have you here! Can understand why you feel as you do. Can I ask why straight onto Humira and not trying Remicade (Infliximab) first? I have been on the latter since June 07 and getting results. Yes I agree for both drugs the side effects are scarey and moreso when you are in the "field" as you are aware of so much more too.

You dont need me to tell you to arm yourself with as much info as possible and if you are unhappy with current support from your GI then yes moving to someone more openminded for a second opinion is certainly an option.

As DB says have you looked at diet requirements and options for you? Would something like elemental drinks be worthwhile trying to allow your gut to "rest" until the other drugs kick in so you get the nutrition you need?

Just pondering out loud. Keep posting and let us know your thoughts and how you get on.

Welcome again!

 

[mommy1st]

I had surgery three times and would do it again in a heart beat. My GI has mentioned a forth surgery but I am currently using Humira as a way to put it off, not for me but for my kids. They wouldn't understand that mommy is in the hospital and can't pick them up for awhile. Of course my surgeon was the best and because I am very athletic I recovered very quickly, even though my incision is from one end to the other. I honestly felt wonderful but my Crohns did come back to the same spot quickly but all the suffering that I was doing wasn't good for me I wanted my life back.

 

[NCWaves]

Thanks alot for the welcome and QUICK responses! Appreciate it.

I guess for me, I've been hoping that a specific drug would once again put my crohns in remission rather than start down that road of surgeries. It seems like surgery will give you the best hope for a full life back quickly, but there's always that "next" time that I hear about. For some it can be many years and with others I hear a year or months even. Ultimately surgery might be what I need.

BUT.... The GI doc talks about how I would loose certain aspects of my intestines (about 6-8 inches), as we hear, the lack to absorb B12 and the good ole' regulator or sphincter. You might find this odd, but 98% of the time I usually never have any issues of diarrhea or watery stools. So the idea of someone cutting out the regulatory worries me that I will now develop a new problem after surgery.

The pain of bowel obstruction is definitely not anything I would wish upon anyone. As I have experienced that too many times already. My wife might debate the whole more than labor pain thing though.... LOL

Also, because of my work schedule being upside down and doing long shifts, I guess the convenience factor of the Humira pen appeals to me. I am also kinda into the idea of perhaps having less allergic reactions with Humira. My GI doc didn't say that I should do one over another, so I sorta suggested the Humira to him as my choice to try next.

Now as I wait for the upcoming Humira journey, I wonder do I continue taking these meds that I feel do nothing for me??? Luckily for me I have been doing pretty well over the last couple of weeks, compared to a just awful month of July.

I can't say there is a specific food or food group that bothers me more than others. I don't eat steak or that much meat often. I stay away from fiber or anything too fatty. I also keep away from processed foods as this only causes a serious case of reflux, which also is no fun to constantly have.

I think what I may do is go ahead and stay with my current GI to get this whole Humira thing off the ground. I've been wanting to try Humira since the end of May when I realized that Imuran was useless even at 200mg a day! I think ultimately though a fresh opinion and new start with a GI doc that I can actually make an appt to see is what I will have to do, despite the unwanted hassels of transfers a ton of records.

How quickly for some of you do you notice a difference with Humira? Do you take any other drugs in conjuction with it?

Thanks again! Larry

 

[mommy1st]

I am currently on Humira and Imuran. I noticed a difference rather quickly to be honest. You mentioned that your worried about having diarrhea after surgery, the funny thing is when my crohns isn't flaring I have normal stools, my doctor informed me that I shouldn't be able to but I do. Actually it scared me the first time I had a normal bowel movement at first I thought great what's wrong with me now but I was pooping just like a "normal" person, go figure.

 

[NCWaves]

I am currently on Humira and Imuran. I noticed a difference rather quickly to be honest. You mentioned that your worried about having diarrhea after surgery, the funny thing is when my crohns isn't flaring I have normal stools, my doctor informed me that I shouldn't be able to but I do. Actually it scared me the first time I had a normal bowel movement at first I thought great what's wrong with me now but I was pooping just like a "normal" person, go figure.

Too funny, you just never know how it drops sometimes. If I am flaring up and have the bowel obstruction of some sort, I don't see anything for a couple of days. Then when I feel pretty good or somewhat normal, I am usually pretty routine about it. It's a weird subject to talk about, so I appreciate you being open about it. :eek2:
You know what they say, Something that is that good for you is also bad for you.... I am just at the point where I don't want to take any of these useless meds that I am on. I am putting all my cookies in the Humira cookie jar and hoping that it comes out alright. :thumleft:

 

[My Butt Hurts]

Hi NC and welcome!
I had a very positive experience with Humira (at first). I noticed a difference on day 6 after my first dose. I was in a great remission for 4 months, and then it just sort of quit. I don't know how Humira works with strictures or obstructions, but my main symptoms were frequency and urgency, and it helped a lot. I didn't have ANY side effects at all either.
Good luck with whatever you choose.

 

[NCWaves]

Thank you to you both !! Penny and "My butt Hurts"
My wife lived in Upstate NY and grew up in Holbrook, LI-NY.

I appreciate your help and response to me, right now this is the only form of communication that I have with someone else who really understands Crohns, so it helps.

One thing I don't understand and humor me here.....
Why would someone continue to take meds that they have taken now for about 1yr at a pretty high dose even though there was no substational evidence or any improvements in pain and flare ups.

To be specific. I have taken the Imuran for almost a year and now I am going to start up soon on Humira. Why would the doctor tell me to continue taking Imuran knowing all of its "potential" harmful risks when we've basically proven over the course of this past year that it has had no effect or healing on my current condition???? As well as the Pentasa which I poop out and have been on for 2 years with nothing good to speak of.
Does this make sense? or do you see something that I don't? I know sometimes you have to step outside the box to maybe understand, so maybe you can shed some light on it for me. I don't care of the copay costs, but I am more concerned to take this drugs with its side effects maybe one day popping up, when I know they haven't done any good for me.
Thanks!!

 

[teeny5]

I don't feel better with the Asacol I have been taking but the doctor says it is working so who knows!

 

[Isla]

Well the Pentasa granules' shells you will see in your stool - its the granules that you shouldn't see i.e. it is dissolving in your colon.

 

[AbstractDonut]

Pentasa is more of a remission maintenance drug rather than a put you into remission drug, from what I understand. And I would worry that if all these drugs are not working that your main problem is a stricture from scarring, which only surgery will fix. Do steroids help you?

 

[soupdragon69]

Hi NC,

The medical teams use a step wise approach to treatment so if you are on something and it isnt having the desired effect then adding something else may not only help but also enhance the previous drugs ability.

Basically there is research out there from clinical trials that prove some meds work better together in combination. For me I am looking at remicade and methotrexate. Previously it was Imuran and remicade. I cant have Imuran now because it affected my liver but the remicade is working reasonably well and the metho will be for ?rheumatoid arthritis. Both my rheums and gastro consultants have research in their own fields for both drugs working well together.

The original plan for me was to do the remicade for a couple of years at least and take me off the imuran down the line once everything was settled as they had better remission rates that way rather than stopping the remicade and going with imuran on its own.

Now the plan for me is if the metho works they will look at decreasing my remicade from 6wkly with possible stopping down the line but they cannot give me a time frame as I have complex medical history. ;-)

Anyway, I really hope what I have said makes sense. Am on the tired side but wanted to try and answer your question.