• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Looking for a new RX

Hello! I am new to this group and am excited to be able to talk to others who have Crohn's.

I am 39 and was diagnosed with CD in 2007. Currently taking 4000 mg Pentasa a day. Recently tried Prednisone. It seemed to help with cramping, but I injured my back during both Prednisone treatments. I don't think this was a coincidence as I have never injured my back before.

The doctor has talked to me about many prescriptions but I am nervous because of the side effects. I finally agreed to Prednisone after 4 years of my GI encouraging me. I will never take it again.

I am taking Narco for pain and something for depression/anxiety. But, these pills are doing nothing to help calm my flare ups. They are just helping me get by everyday. Which I hate. I really prefer natural alternative methods, but have hit a point where I am desperate.

I have been in a constant state of flare for over 12 months. The severity goes from moderately uncomfortable to extreme pain. Have started getting joint pain and the fatigue is getting worse. Although, the Prednisone did a good job of keeping me awake for days.

If you can share with me what you are taking to help with cramping and pain - and what side effects you have. Also, anyone who has suggestions on how to manage joint pain would be great.

I have three children and struggle to keep up with them. I have not worked in 4 years. My youngest child is 2 and our plan was to have me back to work by now - but my husband already misses work to help take care of me and the kids. I would feel really bad for the company that hired me. I use to be a high energy, high performer and self starter. CD has erased these words from my resume.

I have applied for Disability. I was denied immediately and appeal my case in front of a judge next month. I have a rep to help me, who will get paid if I get approved. I hate the amount of stress this process has caused. But, the approval would help tremendously.

Not sure how successful I will be considering my GI doc has basically told me that there is a level of pain and discomfort that CD patients have to live with. Not very encouraging. As I write this I think maybe I should be looking for a new doc?!

I look forward to participating in this group - thank you for being here!!
 

SarahBear

Moderator
Location
Charleston,
Hi, soretummy! Welcome to the forum!

I'm very confused. Was your GI intending to keep you in Prednisone long-term? Is there a reason you weren't given a course when you were first diagnosed?

Unfortunately, there's no good way to help with pain. What you need is a maintenance medication to treat the Crohn's. The Pentasa is obviously not working for you - has your GI suggested you move on to something else? Medications can sound scary, but please keep in mind that all of the potential side effects listed are just that… potential. It's unlikely you would experience more than a few, and even those would probably decrease in severity and go away entirely as your body adjusts to the medication. In all honesty, you would be better off on a maintenance medication because you would be reducing the symptoms and complications of improperly treated Crohn's, and you would eventually be able to stop taking the pain medications (assuming that is what you're taking them for). Untreated Crohn's is more dangerous than medications.

Your GI may be right - if you don't move on to a different medication. That's the cause of your problems here - it may even contribute to why you were denied disability. If you're able to go into remission, you can live a normal life. You may have symptoms occasionally, but they won't be as frequent and severe as they are now. The Pentasa just isn't helping you.

Have you considered medical marijuana, if that's something that is available to you?

I hope you find some relief soon.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the community. I personally advocate a, "Shotgun approach" when it comes to Crohn's.

First, off, when was the last time they did some scans to evaluate the current extent of your disease? Based upon your long term Pentasa use and your current symptoms, I suspect it has progressed and I would be concerned about how scarred you are.

With that said, my thoughts on the Shotgun Approach:

- Western Medicine - Based upon your current disease state, I suspect a biologic may be your best bet.
- Dietary changes - Improve your n3-n6 fatty acid ratio, Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot and we now have a juicing subforum located here.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a big fan of Low Dose Naltrexone. Two studies in adults and one in children have had great results (see the stuck thread when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one :)
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, and magnesium as well as a host of others. But those three first ones should definitely be checked. Do not blindly supplement vitamin D and B12, treat these as medications and get your levels tested first. Although the blood test for magnesium is pretty useless and I strongly suggest you eat foods high in magnesium or discuss supplementation of it with your doctor.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm personally a big fan of tumeric (curcumin) and strongly suggest utilizing it if your doctor is ok with it.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.
 
SarahBear -

I have not been given Prednisone long term due to my own resistance to taking steroids. I am VERY sensitive to medications. One dose of Nyquil puts me to sleep for 48 hours. I have been up for days on Prednisone and have incurred odd injuries while taking it. I know that I need to seek a new course of treatment, but it always feel like I am just swapping one ailment for another. And, the idea of getting an injection is off the table for me. I know that some people handle the side effects with no problem, but this is not the case for me. Medical marijuana is an option, but tends to be frowned upon in my area. Small republican town. If the word got around, I fear I would never get a respectable job here. In addition, I highly doubt my doctor would approve this approach. He does not believe in alternative medicines.

David -

Thank you for your response. I am very open to alternative medicines, unfortunately my doctor is not. I do yoga and get massages, as often as I can afford, and recently started taking tumeric. I keep asking my doctor about my levels but he never goes into specifics and just keeps talking about other long term medicine - with crazy side effects. I will take notes and discuss some of these suggestions with him. Along with trying on my own.

Thank you both for your responses. I really appreciate the help. I know that I need a new course of treatment, but am losing sleep over what I think is best.
 
I have been on several drugs since my diagnosis in 1988. But I can honestly say Humira is the best working drug with the least amount of side effects that I have used.
 
Top