Tired of Feeling Terrible and Need Advice!

I'm new to the forum and looking for some advice on where to go next. I figured I'd start out with my story and see if anyone can offer any advice on what to do next.

Growing up I had always been prone to be constipated. When I hit high school I started to have more stress. This caused me to have the opposite problem, and I was constantly going to the bathroom. I never felt like I had it quite right. I was always swinging between the extremes. But I took everything to be normal. People told me that when some people feel stress they just have to go the bathroom more often. Suddenly I was a junior in college and started to have random severe side pain. It would come for a while, but then pass. Then one day I had severe side pain and it didn't go away. I went into the ER thinking I had appendicitis, but they told me it could be Crohn's. I had no idea what they were talking about and didn't feel like it could be true. I had a colonoscopy and found out that I had been undiagnosed for years. I had/have 12 cm. of scarring from years of not knowing. The scarring was/is so bad that they have to use a gastro mri to see my complete GI tract. Still, things didn't seem like it was true. I started on azathioprine and went back to school. I didn't do a lot of research because I don't think I fully accepted everything that had happened. I would occasionally have "bad" days but I would restrict my diet and wait for it to pass. I didn't want to believe that something like this could happen to me. I'm young. I didn't have time for this.

Most of the time I could wait it out and did not have anything too bad. I graduated from college and became a teacher. I moved to a new town and started my first real job. Of course this caused stress and stress has always been one of my triggers. I started to have more issues. I would have really bad days where I could barely move. I started to see a new GI doctor. They got me in for another gastro mri. Turns out I have an abscess. They put me on antibiotics which will hopefully take care of everything. I find out in a week if they have taken care of everything. If not I have to have surgery. I've been pretty bad lately so I've been on prednisone for almost 3 weeks. They want to move me from my immuno suppressants to humira. I'm pretty worried about the switch. I know the side effects of what I'm on now and I don't know if I'm comfortable moving to something stronger. I'm not very good at following a Crohn's friendly diet. To be honest I took what people had told me to be true and did not really do my own research. I've finally gotten some books and started to see what I should and should not be eating. Some say that you should try to stay away from breads but I find it's one of my favorites to go to when I feel terrible. Usually when I have bad days I do fruit smoothies or buttered noodles. My regular diet is nothing stellar. I finally talked to someone who also has Crohn's and she shared her story. She has been successful with using a natural approach and rarely has to use prescription medicine. I wanted to know other peoples' experiences and what has worked for them. I know some people have success with humira but I don't know if I'm ready for that yet. I would prefer to try a more natural approach before moving on to something more powerful. I feel like I'm taking a million different pills and I'm tired of feeling so terrible all the time.

Hello Molly
Welcome to the forum.
You have had quite a time of it and you have come to the right place for information.
There is plenty of information to be found on the forum.
It can be a tricky thing to come off meds and be very careful before doing this.
You already have some of the complications that go with Crohn's.
Have you discussed with your GI the misgivings you have concerning Humira.
There are successful outcomes for some on the biologics such as Remicade and Humira.
It does look as if you need some continuing treatment.
There will be others on this forum who will likely be along to offer their opinions.
Feel better soon
Hugs and best wishes
Trysha

Hey Molly!
I'm no doctor but I've heard that biologics and abscesses don't go too nicely together. You may want to inquire. I've also got about 13cm of scarring/strictures. I am planning on getting surgery for this within the coming months. Depending on what your docs see from the tests they'll run, there is also a possibility that they will suggest surgery because scarring doesn't necessarily respond to medication. This is both a good and bad thing: bad if you'd rather not go the surgical route (I've had a laproscopic resection and my mother's had an open resection - both of us were out of hospital in under a week and recovery was really not that bad at all, and I was 13!) then it's too bad; if you'd rather go with the one-time risk and avoid the protracted risk of biologics/other Crohn's meds, surgery has bought my mother a remission that (KNOCK ON WOOD) seems enduring, and it bought me 6 years that I likely screwed up with youthful stupidity! I'm planning on being smarter with my gut this time around.

Either way, diet can be great and is very important for us IBDers. Keep a food journal! It's actually kind of fun, if you can believe it, and it'll help you find out if certain foods get you going. I found that reducing carb load/giving up gluten helped a lot with many of my previous symptoms, many people (like my mom) are terrified of roughage. For the love of god beware of raw celery unless you know it's ok! I've also started putting coconut oil in my tea and paying attention to anti-inflammatory foods in general. Also, probiotics, turmeric, and krill oil seem to have been great for many. Best of luck and many hugs As a longer-term patient I'd say let yourself get angry about it and sad for a little while, and then tell your disease to go fudge whatever - we're stronger than our Crohn's . I hope you feel better so soon!!!

Molly,
I have been in your shoes. I was on Humira, and my body started rejecting the medication, then I got an allergic reaction so it had to be stopped. I had surgery in the fall of 2011. I was in the hospital for 9 weeks due to complications. I have had numerous surgeries. it really isn't fun. a book that's great is called "Breaking the vicious cycle" it's very helpful.
I've been suffering for more than 18 years. it's been very ruff. I have lots of experience and I'm willing to try and help you.
if you prefer, we can message privately or email. let me know.