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Crohn's research condradicting and confusing

I was diagnosed with POSSIBLE crohns disease 4 years ago. After an intruding xray and 2 colonoscopys, treated with steroids and sulfasalazine, with no relief but perseverence and a build up of immunity to pain. After being told the side effects of these drugs, I decided much needed research was needed after the 10 minute consultation explanation. Today I was told I was going to be treated with having Croh'ns with a prescription of Azathioprine (which is totally freaking me out after my small amount of research on the drug) and booked in for an MRI to see if there is any extensive damage needing treatment.

My point to this post is that almost everybody after my 4 years of research, has a different story, with different symptoms and treatments. and I am still completly confused.

I have been able to relate to some symptoms, and others not at all. One person may have 2 symptoms that I share, and 4 others that I do not. Another person, no symptoms that I share at all. Another person 4 symptoms shared and 2 others not. CONFUSION CENTRAL. Different sites also have different opinions of different drugs.

Hoping that posting on a live forum with peoples with the disease may be able to help with understanding it clearer.
 

sawdust

Moderator
Hi Lisa, and welcome. I'm glad you've found the forum here - great folks and lots of experiences here to benefit from.

It is all very confusing, and things change over time, which can be frustrating, but I'll argue that these changes reflect research and new and better understandings of the disease. I've been diagnosed for about 8 years and there are definitely things that have changed from when i first talked to my doctors and read up on Crohns than we discuss currently.

Unfortunately, I can't tell you what's exactly right and wrong, because that seems like a moving target. Also, symptoms and treatments seem to be extremely personal, or circumstantial. Something that might work for me, might be terrible for you, or a symptom that you have might affect me in a much different way. The best advice I can give based on my own experience is to get to know yourself in terms of diet, symptoms, and treatments - the investment in knowing yourself is key to managing yourself with your doctors and the things you eat, etc.

And, yes, some of the meds have side effects that can make you think twice. For me, I research it, discuss it with my doctors, and make a decision based on whether the potential downsides outweigh the potential upsides. I don't wish to scare you, but sometimes it's circumstance that can change your mind or "tip the scales" in this regard. That's why, I want to know as much as possible about them before I have to make a decision, which it sounds like you are researching.

What's nice about this place, in my opinion, is the patient focus. Lots of experiences here that I can better relate to and understand as a patient. I hope you find it as useful as I have.
 
Thank u sawdust. I DO most CERTAINLY and HAVE discovered what does and does not set off a bad run for me. (All the best things that I really really love unfortunately. GRRRRR) It most certainly seems as you say a personal and circumstantial disease. Obviously not one that is medically diagnosed properly itself. Which is I guess scary in itself...... given that we are diagnosed with doubt. Thank u for your words. Has for sure made me feel a little less alone.... confused...... sceptical.
 

sawdust

Moderator
I'm excited for others to chime in and reply here too. Confused and skeptical are not uncommon around here, but alone, you don't have to worry about anymore. The people here, and you conversely, can understand eachother like no one else possibly can!
 

ekay03

My dog has hands!
Lisa 74, They want you to take Azathioprine? I take Azathioprine and have for the last 10 years w/ no side affects.
 
Good Morning Sawdust...

I am so sorry to hear about your confusion.

If people invested the time into their health care needs like they do, say buying a car, car insurance, their first home and so on, people may not be so lost.

Before seeing a doctor for the first time, I research their name online to discover their schooling, whether they do research, what clinical papers they may have written, and any details that may help ME. I also, seek, a doctor who has an above average patient care skills, too.

Typically, doctors do not like me, because I come with printed copies of research and a few hundred hours of medical library and online research in hand. I can converse with some ease and at times, challenge the protocol, process, prescription, and anything I believe does not support current information.

I am shocked sometimes, as to the naivety of people to believe 100% in their doctors without doing any research or second opinions. A DOCTOR WHO GRADUATES LAST IN THEIR CLASS IS STILL A DOCTOR. How are they incentive's? Are they looking out for me or an experiment?

In 1985, I was a willing experiment at Boston University Medical Center. It was called "Bowel Rest". 14 days fed by IV Nutrition and antibiotics, No Surgery! I learned that WHAT I EAT HAS A DIRECT CORRELATION TO THE REACTION OF MY BOWEL. GO FIGURE?

PEOPLE GET SO CAUGHT UP IN THE MINUTIA, THEY FORGET ABOUT THE HARM ON THEIR BODIES. Oh it'll be too hard not to eat fast food? Oh it'll be too hard to ...yadda yadda yadda..

My SURVIVAL has been blessing! And a Ton of Work, but I did MY BEST at controlling my DISEASE, knowing all I can, so that I will NEVER GIVE INTO this Disease and ALLow IT to CONTROL ME til the day I die...

Check out the National Digestive Diseases Information Clearinghouse (NDDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) at http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/#what
(Every Country has a Clearinghouse like this)

Check out http://clinicaltrials.gov/ to learn about the latest findings or trial you may want to participate in.

The most success I had changing my eating habits and putting myself in remission is
http://www.breakingtheviciouscycle.info/ Doctors are now believing in the importance of FOOD. Elaine only had a PHD not an MD and so, doctors did not believe so much in her research until now.

Another great site is http://www.askapatient.com/rateyourmedicine.asp where you can read about other's and their medication drama:>)

The most important idea I always 'push'..we are our best advocates or the worst. Without knowledge, we are knowledgeless....?

Your doctor did the research, shouldn't you?

Best wishes!

jeffrey
 

Angrybird

Moderator
Hi Lisa and :welcome: It can be confusing but as already mentioned here this disease is very personal in the sense your body has its way of reacting to it whilst mine could be completely different - this is common. Meds that have worked well for other may not work for you and the same with what foods may trigger problems. You have mentioned that you already know what can set things of and this is half the battle. I am on the Aza for the 2nd time and whilst the potential side effects are a little scary the odds are mostly in my favour and it is preferrable to the alternative which is an even more invasive nasty med. If it can keep the crohns under control all the better - I am more than happy to wait a good long while before I need another op :) I am really pleased you have joined us, NEVER worry about asking questions or having a good old vent if you are having a really bad day.
 
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