Symptoms improving - do I really need to start stronger meds?

[VetGirl]

For the past 4 days my symptoms have been steadily improving. I posted more about what was going on in thread discussing oral contraception, but to summarize: All my symptoms started when I began taking the pill in September, and I decided to stop taking it a little over a month ago. Since then, Lialda has helped with the loose stools and slightly improved frequency. A fistula reopened a couple weeks ago and seemed to coincide with my first period off the pill.

I spoke to my GI a few days ago about starting 6-MP due to the fistula and some ulcers he saw on the pill cam. That was the last day of my period. I only went to the bathroom twice that day for the first time since September, and once the day after that (I can't remember the last time that happened). Sidenote: I never thought I'd be this excited to only go once in a day. This has continued for the past 4 days, and the urgency is completely gone. I used to have infrequent abdominal pains, but I haven't felt those in several weeks, and my fistula seems about a day away from being entirely closed.

If everything's improving with no extra intervention, is it really necessary to start 6-MP? I'm feeling the best I have since last September, and I'm scared that starting something like 6-MP will do more harm than good right now.

I'm trying not to get my hopes up that everything could just boil down to a bad reaction to the pill, because I know that's incredibly unlikely. More realistically, I might just be doing well with the Lialda, Vitamin D, and B12. I want to talk to my GI about holding off on 6-MP for another couple weeks to see if my inflammation markers go down, but I'll be leaving the country soon to go back to school, and I'm sure he wants to get me on a solid treatment plan before then, especially if he has to monitor my bloods.

On top of it all, my sister's getting married in 2 weeks, and I want to be able to celebrate with her - I don't want to worry about how I'll react to a medication that might not even be necessary.

I don't want my GI to think I'm in denial, or that I don't understand the importance of keeping the inflammation under control. I just don't really know what to do at this point.

 

[CrohnsChicago]

The key thing to get out of what you just told us is that you seem to be only focused on your outer symptoms. Your GI just recently saw ulcers INSIDE of your body and fistulas. Just because your symptoms are fading on the outside doesn't necessarily mean you are fully healed on the inside. Healing takes time. And it is far more likely than not that flares and fistulas return which is why your doctor recommends 6-mp in hopes that it will help you KEEP things under control. He is suggesting it to you as a maintenance drug.

I hate to say it like this but one false mistake or stressful event has the potential to trigger an episode again in all of us and 4 days without symptoms , while a good start, is not a long time by any means.

You should really sit down with your GI and make sure you understand what is going on INSIDE of your body and why they are suggesting 6mp or any other treatment plan for you. And if you feel like you don't want to go that route, you need to let him know this as well and keep the lines of communication open.

Everyone is different with crohn's but understand that there is no cure and it can come back at any time which is why many of us stay on maintenance medication so that we have a chance at continuing to live a life as long as possible without dealing with all of the immediate pain and suffering and complications that IBD can cause.

 

[VetGirl]

I know 4 days isn't alot, but I'm cautiously hopeful. As for the internal damage being done, that's what scares me the most - mucosal healing is the goal right now. My concern with starting 6-MP and using it for maintenance is that from everything I've read, it takes a couple months to really work. If things are resolving with the Lialda, I'd rather use that for maintenance than something with stronger side effects. Then I can pull out the stronger meds later, if necessary. I know Lialda is primarily colonic and topical, but from the biopsies and scope paperwork I have, all the inflammation was mild and non-specific. I just don't know if there's anything else that could control the SI inflammation in the same way.

I haven't actually seen my GI in person since my scope, which was almost two months ago. I'm going to try to get in touch with him tomorrow, but I don't know if he'll think checking up on ESR and calprotectin levels is enough of a gauge of inflammation. It's frustrating being new to all of this, I've literally learned everything I know about Crohn's online. I want to sit down with him and actually talk about a plan, but I'm not going in for another three weeks.

 

[CrohnsChicago]

I suggest keeping a journal of symptoms and diet and stress and triggers. This way you can better gauge how your body reacts to various factors including your medication. Go into your GIs office armed with knowledge not just of what crohn's is, but what your body is doing as well because he will only know what you tell him about your experience with IBD and base his suggestions off of what you tell him in combination of what your recent tests say.

Bloodwork will definitely be in your future. Gauging things like CRP, hemoglobin, white blood cell and vitamin levels are the standard. Any other tests you feel you should have based on your situation you need to make sure to ask for yourself if your doc does not recommend it.

I'm not sure exactly how long you have been diagnosed or what other medications you have been on but I will tell you that I have had numerous flares. All of them where I was treated with Asacol and steroids. The flare would go away, but then a few months of living just on Asacol it would come back even worse than before. If your diagnosis is crohn's, 5-ASA medications typically work better on UC patients than crohn's patients. I learned this as well from personal experience. It was a very difficult decision for me (as for many of us) to move forward with more intense treatment.

But I started 6-mp 5 months ago and I can tell you that I experience no side effects from it so far. And my bloodwork so far has been very good. Take some comfort in knowing that you will and should be closely monitored via blood tests if you decide to take 6-mp. If your doctor has any suspicion that you are at risk of complications, he will adjust your med or stop it right away. It's better than things like Humira or Remicade in the sense that (as I am sure you have already found out via your research) if you have to stop it due to side effects, many of the side effects may reverse themselves.

Also consider that the information you read regarding side effects is primarily geared towards cancer patients who also take these medications. They receive MUCH higher dosages of 6-mp than IBD patients do. Thus their chances of experiencing short term and long term side effects are much higher than ours.

You really do have a large number of options with regards to treatment so push for an appointment where you can sit with your doctor and talk about everything from biologics to alternative treatment if you are interested in that route as well.

You will definitely learn A LOT online.....there are tons of options and treatment combinations that can be made. It can get a bit scary and overwhelming to look up and read about after a while. But its FAR more important to pay attention to your own body when making your decision knowing that we all do not experience crohn's the same and we all do not follow the same treatment plans nor do we react to medication or alternative therapies the same way. Know all of your options and do what you feel is best for YOU.

wishing you all the best! Let us know how your doctor visit goes :hug:

 

[Jennifer]

You could request a Fecal Calprotectin test if you and/or your GI feel that checking for inflammation with blood work isn't enough to really gauge what's going on and having another test (like an MRI or CT scan with and without contrast) before you leave may also give you and your GI a better idea on what's actually needed. Inflammation can increase rather quickly (I've seen it happen in less than two months) so getting some more tests out of the way should put you at ease in knowing that you've made the right decision either way (to take the 6MP or not).

Keep in mind also that since 6MP can take a few months to kick in, once you do decide to go on it, it will still take a while to kick in which allows more inflammation to build up while you wait to start it.