Am i ready for stronger treatment?

[upstateNYgirl]

am i ready for stronger treatment?

Hi. After my most recent doctor’s appointment, I feel more confused as ever.

Crohn’s history: Beginning in February 2011, I noticed a number of symptoms that took me to many specialists. I have been under the care of a Gastroenterologist since July, and was diagnosed with small bowel Crohn’s 8/25. Since my diagnosis I have learned that I have been intermittently flaring and was prescribed Lialda and temporarily on prednisone. At my appointment on Friday, my GI said he’d like me to start IV Remicade and/or 6MP. In addition he’s scheduled an upper GI with small bowel follow through. For the next 2 weeks he’d like me to take Ciprofloxin and Flagyl. Being recently diagnosed, I never thought I’d be making a decision on treatment options this serious.

There are serious side effects to the advanced maintenance treatments and antibiotics mentioned above. How do I know if I really need to begin these treatment options? I would like to get a second opinion, but don’t know of any reputable GI’s in the Syracuse/Rochester area. I’d appreciate any recommendations of doctors from any of you. How do I knowif my doctor is "good"?

My “triggers” have not been identified because of the frequent flaring. Now that I am off of prednisone, Ihave begun a food trial. I started with boiled or plain baked chicken and rice. Every 2 days I am adding as new food/drink. When I find foods that bother me, I will remove them from the diet and continue. Has anyone else ever tried this before? Was it successful? Any tips for identifying triggers?

Thanks for reading through this. I’m like many of you…confused, scared and looking for information.

 

[Loriebird]

Hi, NYgirl. Unfortunately, only you and your doctor can decide if it's time to move to a more serious treatment. But, certainly, get a second opinion. I'm currently on remicade and 6mp - I love them both. If you feel like your symptoms are manageable, you might start w 6mp because it takes over a year to become fully effective. Remicade is effective immediately but it is extremely expensive and much less convenient than taking a pill everyday. Also, I have been told that if you stop remicade, it is not easy to get back on. I have been told that you can be on 6mp and remicade for decades assuming no bad side effects. However, I know many people who have said that the effects of remicade quickly wear off. Also, bc 6mp and remicade are last resort drugs, I would try to start off on one and save the other for backup in case you reach a time where the first is no longer effective. If that's medically possible.

If I were you, I would start by getting a second opinion. I'm in Tx, so I don't know who is good in NY. But it's amazing how different doctors can completely disagree. If you feel like your symptoms are mostly under control but do need to switch meds, you might consider one or the other before doing both. That way, if you have bad side effects, you will know which drug is causing the problem.

 

[Loriebird]

Also - something for us girls to think about - I'm not sure about 6mp bur I do know that you will be taken off remicade if you become pregnant. My remicade nurse told me that many women who are taken off remicade bc of pregnancy have trouble getting back on bc the body develops a kind of allergy to the remicade. You may ask your doctor about this

 

[Entchen]

Hi: I agree re. the option of getting a second opinion.

A few questions to consider: is your Crohn's considered severe, moderate, mild? Is that based on imaging or based on your symptoms? Are you having symptoms that significantly impact on your quality of life? Have you tried Imuran, which some consider to be a step in between Lialda and Remicade?

The current push is to start with the heavy treatment to try to hit the disease hard and prevent major complications. There are both pros and cons with that approach. You're on a very strong medication with potential for significant side effects. But you might achieve an excellent quality of life and escape some of the problems that can develop with active Crohn's.

Here's what's happened to me: my GI starts with the mild medications and moves up only if absolutely necessary. I agreed with his perspective until last week, when I developed my second fistula. I questioned the approach to try to make sure I was fully informed about the decision, and I expressed concerns about further problems developing by allowing the inflammation to fester, but I liked not going for the hard-hitting medications and accepted his advice that as long as I wasn't crippled with pain, this was the way to go. As a consequence, I was under-treated for my Crohn's for a year and a half, right up until Monday. (At least, I think I am now receiving the appropriate level of treatment, but only time will tell as my understanding is that it takes a while for Imuran dose adjustments to start to work!)
Last Monday, I had to push push push for him to see that my Imuran dose (which was only prescribed a few months after another GI recommended it) was too low for my weight and for my symptoms. I have been in a constant flare for at least 2 years now (as evidenced by colonoscopy, MRI, bloodwork, symptoms, etc.). I have 2 fistulas, both of which developed in the past 7 months. I could handle some fruit over the summer but right now can hardly tolerate anything that contains fibre. So I can see that problems would very likely have been prevented had I received the harder-hitting treatment right from the get-go. I appreciate the need for caution but in my case, anyway, there should have been more action taken from very early days.

Other people could very well find, on the other hand, that they would have been fine with a milder class of medications rather than going on Remicade. To the best of my knowledge, there is not a formula that is guaranteed to work for all cases.

I hope you have the time to explore your options before making a well-reasoned decision. And, feel better soon!

 

[Manzyb]

As far as treatments go, you actually can take Remicaid and 6MP while pregnant. I took humira throughout my entire pregnancy and had a completely healthy baby.

 

[Zaf]

Syracuse Dr's

Hi. After my most recent doctor’s appointment, I feel more confused as ever. I would like to get a second opinion, but don’t know of any reputable GI’s in the Syracuse/Rochester area. I’d appreciate any recommendations of doctors from any of you. How do I knowif my doctor is "good"?

I was diagnosed with Crohn's at the age of 12 in 1986. I have been with the same Gastro group (Syracuse Gastro Associates) since 86', but finally found a great doctor there. His name is Dr. Dennis Reedy. He doesn't rush at all, and really listens. I feel comfortable talking about options with him, and he is relatively young. He even helped coordinate a visit I took to go see Dr. Present at Mt. Sinai Hospital in NYC. Dr. Present is one of the leading researchers in the world, and they tailored my treatment together. So far, things are ok. Dr. Reedy also has an excellent PA that is very accessible. I have seen 2 other doctors in that practice, and almost punched one of them in the mouth during a hospital stay. He didn't even take the time to read my chart and asked me, "have you ever heard of Crohn's disease?" To which I replied, "oh you mean the disease I was diagnosed with 20 years ago?? how about you read my chart first *******?" Yes, I was frustrated, I was sick, and I was on day 3 of licking ice cubes...I met Dr. Reedy a day later, and instantly had a great feeling about him. He answered anything I asked him and didn't ******** me at all. He really treats me like an individual and for that, I recommend him. Hope this helps, and best of luck to you.

 

[upstateNYgirl]

Syracuse Gastro Associates: Dr. Dennis Reedy. He doesn't rush at all, and really listens. I feel comfortable talking about options with him, and he is relatively young. He even helped coordinate a visit I took to go see Dr. Present at Mt. Sinai Hospital in NYC. Dr. Present is one of the leading researchers in the world, and they tailored my treatment together. So far, things are ok. Dr. Reedy also has an excellent PA that is very accessible. I recommend him. Hope this helps, and best of luck to you.

You rock Zaf! As of 2 weeks ago, the 2nd opinion process was started...hoping to hear from Syracuse Gastro anyday to schedule appointment. I'm glad someone recomends them!