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Stopping Medication to See Symptoms?

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Crohn's Disease
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Posted 9/17/2013 10:40 PM (GMT 0)
Hi all--

Just a quick question. Has anyone stopped their medications (with doctor approval or not) to see where their symptoms are at without medication?

I get the feeling my Crohns is very, very medication dependent, and am considering consulting with my next doctor (currently hunting for a new one) about going off of it for a short period to see what happens.

Thanks for your answers!
Posted 9/17/2013 11:22 PM (GMT 0)
Personally I won't recommend that though you could give it a try for a couple of days provided that you are not in a flare up. I have two experiences w this. The first was when my GERD was aggravated by Pentasa. So, I stopped Pentasa cold turkey for 2 weeks and then I rushed to my GI w unbearable intestinal pain. the other one was when I was too depressed. I decided all of a sudden, in the middle of a flare up, to stop all medications all together. And the result was severe excruciating pain that could not be controlled. I kept being tortured for 4 days until my mum convinced me to see my GI. He was very understanding and tried to make me change my mind and I did. That was more than 4 years ago.
I too think that I'm too dependent on my meds. I can't figure out the reason: Is it because I know that if I skip a dose, I will be in pain and I don't want to go through this feeling as I still remember my previous experience or is there something else. In my last visit to my GI, when he was revising the meds I'm on, I started enumerating the meds in my signature and was surprised when he said "Enough" and decided I have to stop the antispasmodics and keep only the main Crohn's meds. It is as if I feel more secure by swallowing all these meds though I'm sure they do have devastating side effects.
Posted 9/18/2013 1:31 AM (GMT 0)
Thanks for all of this info, minnietoty.

Yeah, I assume most doctors aren't going to be big fans of this idea haha. (It really makes me miss my last doc before I moved. He would have probably let me do it if I had sound logic and reasoning.)

I want to be in a place of maintenance versus being on edge, I guess. If I miss a dose, it would be nice to know that I wouldn't have an accident just because I missed a dose.
Posted 9/18/2013 1:42 AM (GMT 0)
While the symptoms are upsetting the most important reason for staying on Crohn's meds is to try to limit the long term damage the disease may be causing....so you can be symptom free but still have damage to your intestines and vice versa. With Crohn's/colitis though, I'd imagine the Lialda really does help both symptoms and prevent mucosal damage, so going off the meds doesn't seem like a great idea.
Posted 9/18/2013 12:04 PM (GMT 0)
I can't see any sound logic or reasoning for going off meds that appear to be working, unless they are causing side-effects almost worse than the original disease.

What is the experiment meant to 'prove', that you need meds to maintain? So what if you do? Nobody wants to take meds for life. Nobody wants to have surgery after surgery either. I'd say that nobody wants a stoma, but that upset people last time, so I'll just say I don't want a stoma.

The more time passes, the more I feel like pb4, disgusted and humiliated by this disease and what it leaves us with. If you can avoid that by staying on a med which works, I would do so.
Posted 9/18/2013 3:37 PM (GMT 0)
I stopped my meds just over 2 years ago, I didn't really think they were working for me.
I also found that exercise helped me, where as my doctor and nurse told me that exercise wasn't helping me and I was to only to gentle exercise.

That would have been fine, had I not been an Outdoor enthusiast. My last flare up was when I was on meds. I haven't had one since. I also study Outdoor Education and worked from May till August as a canoe instructor on the Ardeche river in France, paddling 64km every 6 days. Haven't had any crohns issues since.

Wouldn't recommend it though, I'm just stubborn. This will probably come back and smack me in the face, good luck! :)
Posted 9/19/2013 1:38 AM (GMT 0)
@gumby- I completely understand where you're coming from. I think my wanting to go off of the medication is to once and for all get things figured out diagnosis-wise. I feel as though by masking some of the damage/symptoms with the Lialda, my doctors aren't getting a good idea of what's really happening.

@NCOT- I guess my fear is that it is not really working. It is, but isn't as it should, I guess is what I am trying to say. It doesn't work as it should, but no one seems to believe me. Maybe it's stupid to go off of the meds, but I also am starting to feel like doctors aren't hearing me, and don't realize that the medication is masking the illness but not enough. Does that make sense? I feel like I am only making sense in my head. I want to go off the medication, then have a colonoscopy to have a real, solid report. Dangerous and stupid? Oh yes. But I'm sick of being tested and re-tested only to be told, well, we still aren't quite sure whether you have Crohns or colitis. It sucks. I just want answers and a medication that makes me feel like I can lead a normal life.

@amandab- Thanks for your advice as well! I don't think I would ever go off permanently. You're a brave soul!
Posted 9/20/2013 8:40 PM (GMT 0)
Ask what your pattern of inflammation is...CD affecting the colon (crohn's colitis) will have a different pattern of inflammation compared to ulcerative colitis...with CD it's patchy inflammation that is combined with healthy tissue, with UC, the entire area will be inflamed with no healthy tissue mixed in with inflamed tissue.

Have you ever had any small bowel tests? With CD it can affect more than one area at a time, to help DX it's a good idea to get small bowel tests done, not just colonoscopies as that can only go up so far.

Good luck!
Posted 9/21/2013 12:03 AM (GMT 0)
Girlzilla - Oh okay. So you think your meds are only partially controlling the disease? As for not being able to distinguish between Crohn's colitis and Ulcerative Colitis, that's actually not that uncommon - about 10-15% of IBD patients are estimated to have indeterminate colitis, where neither Crohn's nor UC can be diagnosed with certainty.

Two things to remember. One, you have an IBD diagnosis which isn't any less 'serious' than Crohn's or UC. If doctors act like they don't care, that's just doctors being doctors. I had years of doctors fobbing me off with a firm (as far as I know) Crohn's diagnosis. Two, for the purposes of treatment it really does not matter a jot whether it's Crohn's Colitis or Ulcerative Colitis, as long as surgery is not required - the meds used are the same for each.

Even with surgery it does not make as much of a difference as you might think: patients with indeterminate colitis do not seem to be at much greater risk of developing Crohn's after surgery than patients with uncomplicated UC.

Anyway, meds not working properly. I don't think it is a great idea to come off them to induce a flare-up, because 1) it probably won't work, at least not in the short term; 2) but if it did work, the disease would be even harder to control; and 3) docs are still gonna be docs and probably not care about your new, more severe, disease.

Instead, argue for better treatment. If you are not on the maximum dose of Lialda, try increasing the dose. If you have rectal/left-sided disease, ask for rectal meds. If your disease is moderate to severe, ask for biologics. If uncontrollable diarrhoea is your problem, ask for a medication to control diarrhoea.

I am tired and am quite sure I have waffled a lot already. Best of luck, I hope you can achieve remission.
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