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Newly diagnosed...looking for opinions on treatment options

Although I could write a short novel on my health journey over the last two years, I will try to keep it brief. In May of 2011 I gave birth to my fourth child, shortly after I experienced some serious family trouble that could have triggered everything. My symptoms were all throughout my body, but my bowel issues were only minor. After seeing more doctors and doing more tests than I can count, I finally requested a Celiac Test in August of 2012...it came back positive. I was so relieved, but that relief soon dissipated when I only seemed to get worse on the gluten free diet. My weight continued to drop and my other symptoms persisted. I only began to see improvements after going dairy free, nearly sugar free and began over the counter allergy meds. I gained 5 pounds in 6 weeks and my hair began growing back. But, despite the improvements I could tell something was still off with-in me. Long story short, I was finally just diagnosed with mild Crohns in December. It is only in the terminal ileum, with no narrowing or strictures or fistulas. This is where I need advice, my doctor advised me to start on Humira or Remicade. I, however, from two years of trial and error have been able to maintain a semi-normal life by altering my diet. I only have one bowel movement a day, I have never had bloody stools, and I only experience minor abdominal pain and discomfort depending on what I eat. I struggle to gain weight, but being gluten free, dairy free , and sugar free I'm not pounding the calories. I have become keenly aware of what my body does and doesn't like. So my question is, do I trade my mild Crohns symptoms for crazy side effects of toxic drugs, or do I listen to my "gut" and give Paleo/SCD diet a good try before diving into the hard-core meds. I don't want to be stubborn and refuse meds, but I don't want to be more miserable on meds than I am off them. Any input would be great! My head is still spinning, but trying to keep an open-mind.
 
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SarahBear

Moderator
Location
Charleston,
Welcome to the forum, tiredandsick!

It is unlikely you would have many side effects from Remicade or Humira (or any other medications). The side effects listed are no more than possible side effects. It's highly unlikely that you would experience more than a few, and those few would likely decrease or disappear entirely as you adjusted to the medication. All in all, the potential effects of these medications are less severe than the effects of untreated or improperly treated Crohn's.

However, I agree that they may not be the best choice in your case. Personally, in your situation, I would push for a more gentle medication, such as 6-MP / Imuran, Azathioprine, methotrexate, or even a mesalamine. I would take the medication until I achieved remission, and then attempt to decrease the dose or stop entirely and treat only with diet at that time. However, that's just me. Ultimately, it will come down to what is best for you.

I hope things go well for you!
 
Thank you so much for your response...sometimes I get so paralyzed by the "potential" side effects that I don't do anything at all. That, unfortunately, is not an option.
 
I agree that you can't be sure what side effects you'll get unless you try - medications may not may you feel as bad as you fear.

Are you sure it was the diet that was keeping your Crohn's mild? Sometimes Crohn's just naturally is mild, or can go into remission spontaneously; the diet may have been a coincidence, though obviously with coeliac you must still avoid gluten. Have you been tested for lactose intolerance? Giving up sugar may not be a good idea, especially as you already have to avoid gluten. Being underweight can cause long term health problems as well, and eating an overly restrictive diet will make it harder to keep your weight up.
 
Before my diagnosis, I have for the last four years trialled eating differently... Dairy free, gluten free, wheat free and sugar free, with temporary relief... ( not all at once)...
I was starting to get so paranoid that that everyone was trying to poison me as everything I seemed to eat took me to the toilet... Buscopan was my best friend...
I can on some days have milk and other days I do and it flares me up...
Same with bread, same with veges etc...
I now have my diagnosis, so I won't put any food complaints in to respected restaurants...
I have in the last 2 years realized its more about moderation and smaller amounts than any particular diet for me...
I also eat curries made from scratch at home with garlic and ginger, a little rice, mostly vegetarian and it has helped my system...


Sent from my littlefishes
 
Thank you. Yes, I agree, having Celuac before I knew I have Crohns I starting thinking I kept eating traced of gluten in everything. I agree with the moderation thing, it's easy to get fanatical and lose sone common sense. Have you been on any medications too?
 
I haven't seen a specialist yet, I will happily take a script, but will be unlikely to actually fill it, as I had Ross river over 4 years ago and got addicted to pain medication ( morphine) and I don't want that to happen again... I will try natural when I know the severity of it...


Sent from my littlefishes
 
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