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New to the site, thought I would share my story with Crohn's Disease

Hey Everyone! I am new to the site, but unfortunately not new to Crohn's Disease. I was diagnosed about 8 years ago at the age of 15. I have been on most of the conventional treatments including, prednisone, remicade, humira, pentasa, 6MP, entocort, and some others.

Remicade helped for a little while, but when I wen to college my doctors decided I should go on Humira due to its convenience. After being in remission I decided to go off the Humira because I did not like being on long term medication and I seemed to be managing everything well with diet. I have a rather different manifestation of the disease, where I do not get diarrhea, but instead I become constipated and have lots of inflammation. It was suggested to me that this occurs because of where my inflammation is in my digestive tract.

I was doing fairly well up until Dec. 2011 when I had a short hospital stay due to a flare. I was in extreme pain all the time and I almost didn't make it back to college for my last semester. During that school winter break I was able to get back on my feet using prednisone and I was put back on Humira. However, everything else in my body seemed to start to go haywire. I was in pain everywhere, I was exhausted, and I could barely function. I had just enough energy to get to class, come home, and go back to bed. Eventually I saw a rheumatologist who diagnosed me with fibromyalgia and we decided that the source of my issues was Humira, so I went off of it. My Crohn's was fairly well controlled, so it wasn't a big deal.

So here we are to the present. I am flaring again and I have been for the last two months. Prednisone has stopped working and next week I am being tested for SIBO (small intestine bacterial overgrowth) and also having a colonoscopy to see how my intestines look. My doctors are cautious about putting me back on Remicade for fear of an allergic reaction, and I do not want to go back on Humira for all the trouble it caused me last time. I had read some things about elemental diets being of some help, so I am starting an elemental diet to hopefully get things under control. I really don't like medication and believe that I can control my Crohn's with something other than medication.

I am just very scared right now because I don't know how to help myself not be in pain. And I am scared for my job. I was just hired as a full time employee a few weeks ago, and now I am missing all kinds of work due to doctor's appointments and needing to stay home sick because I am in too much pain.

So that is my story, thank you all for reading and I look forward to meeting you all!
 
Welcome to the group! so glad that you shared your story with us. I am somewhat new to this forum and it has helped me tremendously! I felt a lot better knowing that I wasn't the only one going through tough GI appointments or weird symptoms. I am currently taking Humira (no problems so far) because the remicade stopped working for me as well as when I would take the remicade I would ofter have bad reactions. I think its great that you are looking at other avenues besides medications and I hope you find some relief. At this point I am in your same boat with my pain and having trouble with work. They just don't understand and really don't care that I have this disease. I had to sign up for FMLA, it protects me in case I need to call off have a procedure or doctors appointment due to my crohns disease. I would suggest you looking into that. As far as pain relief, I had just recently put a forum up about my new pain medicine that I have been put on. Its call Nucynta and it works wonders. It doesn't slow down the digestive track so I imagine it would work great for you. There is less likely of addiction after a long period of time taking it. I will say it has made my days a bit more bearable and I am able to work a full day without really bad pain. Good Luck and hope you get to feeling better soon!
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

I know of others here who have found success with diet here whether it be the Specific Carbohydrate Diet (SCD) or the Paleo diet or others. I myself do not have any luck this area but to get more information about this thn do check out our diet and sups sub forum: http://www.crohnsforum.com/forumdisplay.php?f=17. Things do of course depend on what the upcoming tests show, I think it is also worth getting your all of your vitamin levels checked asit is common with crohn's to have deficiences in this area. Also out of interest what dose of the Pred are you on?

There is a lot of helpful info and support here so do have a good look around and please keep us updated on how you get on.

AB
xx
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum!

Are you currently taking anything for either Crohn's or fibromyalgia?

I saw a post recently in the Books, Multimedia, Research & News section of the forum. You might be interested: Low Dose Naltrexone for Fibromyalgia study. This thread links to studies on LDN and Crohn's: Low Dose Naltrexone Studies and Links. I see that you say you don't want to use medication, but an alternative treatment that could help with both conditions might be worth looking into. :)

:hug: I hope things get better for you soon!
 
Welcome to this forum. You came to the right place as there are lots of people here with great advice!

My daughter was 15, too, when she was diagnosed with Crohns and she took just about all the meds you mentioned, but she found that taking Vitamin D3 and Folic acid controlled her symptoms. Please go to http://www.crohnsforum.com/showthread.php?p=601007#post601007 to read a recent chat about the importance of getting your level of Vitamin D tested and then supplementing accordingly.

I wish you the best!

Lisa
 
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