New Member whose battling denial with Crohn's

[93ILRes]

Hello all!

This is my first time ever posting on the Crohn's Forum. I was diagnosed with Crohn's disease in the summer of 2012. I was on Remicade from 2012-2014 and Humira from 2015-2016. I stopped taking Remicade because it was inconvenient as I was a college student away from home and I had to come home every 8 weeks for my medication. Eventually I just thought I could go without my medication. Then I suffered a flare up and went on Humira. I was on Humira for a year straight and then I was without health insurance for 3 months and during that time I went off Humira. I have been off Humira for almost a year now and once again I am suffering a flare up... I went to my third gastroenterologist, since 2012, today and he told me I had to get my act together otherwise surgery would be in my future. This doctor was blunt and scary but I honestly believe he's the right doctor for me! I need someone who will tell me the negative consequences if I don't take my condition seriously because I have a history of not taking it seriously. Part of me is in denial that I have this disease. I was an all-conference hockey player in high school and played one year of college hockey. I view having a disease as being "weak" and I know that's silly and stupid but thats honestly how I feel most of the time. I know I look and feel a lot healthier physically and mentally when I am constantly taking my medication. So I have a colonoscopy coming up next Friday and I am most likely going to be put back on Humira. Only this time I have a goal of not getting off it without my doctor's consent. I also have the goal of taking my medication on time religiously. I never really talk to my friends about my disease because I am embarrassed, so I am turning to this forum as a source of support and encouragement. I look forward to the future. I now take care of all my medical decisions and planning on my own without help and assistance from my parents. I believe this will be a major stepping stone for me to take as I become an adult. So please any advice, encouragement, or support is greatly appreciated! I hope to build a connection with fellow Forum contributors as we all seek to put our conditions in remission and live as healthy of a life possible!

 

[ronroush7]

Welcome. You have come to a great place for support. Come anytime for support or questions, venting or if you want to talk.

 

[Lisa]

Welcome. It sounds like you have done some significant growing up when it comes to your disease. I know it isn't easy, I was in denial myself for years as a young adult, even though I was diagnosed as a young child.

Hopefully Humira will work for you again, as Ron said, this forum is for you to talk, ask questions and event vent.

 

[GI Jane]

It is so normal to be in denial at first. Especially when you are a healthy strong person. I am a black belt in Karate and was an all star athlete in a lot of areas. Also being in the Army you are "Army Strong". You go through the stages of death with this disease I believe. Denial is the first of course....and so on. If a medication works definitely stick with it as they seem to lose effect after a while. Having a great doctor is so awesome.

 

[scottsma]

I'm glad you're taking this seriously and hopefully you'll begin to go into remission soon.

Please don't let this darned disease make you feel as though you're weak.Believe me,it takes strength and determination of character to cope sometimes.But we do it everyday,and most of us have pretty normal lives,do sports,travel,hold down jobs and get through exams.Welcome to the "club".

 

[DougUte]

You are not weak because you have this disease! It takes strength to go through all the stuff Crohn's disease throws at us. I agree, you have grown up regarding your disease. I really recommend that you stay on your treatments until they stop working for you. Going off meds like Humira and Remicade, just to restart them later, can lead to developing anti-bodies which prevent them from working.

 

[cmack]

Welcome,

I'm not weak and neither are you. Do what you need to keep your body healthy. Meds are very important. You want to avoid the scalpel at all cost, (been there many times). Talk to us any time we all have different areas in which we can help one another. This is a very supportive place.


Welcome again,

cmack

 

[crohner000]

This is definitely relatable. When I was on Remicade after first being diagnosed I was supposed to be taking a bunch of oral medications as well (Asacol, Imuran, Prilosec), but after my symptoms calmed down I stopped taking all of them basically without telling anyone. I don't really know why I did this. It was a combination of forgetting to take them sometimes, but then even when I would remember I often still wouldn't actually do it. Definitely something psychological/emotional to do with my relationship to my disease. It took me about a year to go to my doctor and admit that I had stopped taking everything. Luckily I was doing well at the time so he just said well if you've been off of them for a year and everything is still good then you must not need them, and just kept me on Remicade.

A lot has happened since then but I am back to taking a bunch of oral medication and now I use this app called MediSafe on my phone. I really like it, it gives me reminders when to take everything and shows a report of my Weekly Adherence. You can also link it with family and friends to help hold each other accountable, though I haven't used that feature. Even if you aren't on oral/daily medication, maybe this could help you with encouraging/reminding you to do your Humira? When I was on that I would always put off giving myself the injections, sometimes multiple days or even a full week.

Unfortunately for me it took becoming really sick to start being responsible and taking my disease seriously... hope you don't get to that point!

 

[snix0717]

I was diagnosed with IBS when I was 16. In 2011 I was diagnosed with Crohn's Disease. I was put on Pentasa. I took the Pentasa twice a day and went on with my life, social drinking, eating anything I wanted, etc. without any symptoms that I knew of. (no care in the world) Just this past February I was told I need another colonoscopy to check on things. Well, my crohn's is active for the very first time. I started 6-MP this past Saturday and will start Remicade on 3/8/17. My hardest thing is my diet. I just can't get it together but I really need to.
Do you guys have a list of foods that you stick with? :sign0085:

 

[cmack]

snix,

Welcome,

I'm sorry to hear about your trouble. I try to eat organics and I have a lot of smoothies. I make mine with fruit(usually a banana), some greens1/2 cup or so, 2-3 walnuts, 2Tbsp ground organic flax seed and organic almond or soy milk, say 3/4 cup.

Sometimes if I'm having a bad day I stick to bland things like rice, chickpeas or bananas. Check out nutritionfacts.org they have lots of info on diet and Crohn's disease. I also avoid meat because it has a lot of gylphosate that makes matters worse. I hope this helps. If you have pain that won't go away or if blood comes out be sure to see a doctor.

P.S. Stay hydrated. I drink 2L of water per day minimum. You may also need electrolytes from the pharmacy if you have the runs.

welcome again,

cmack

 

[ronroush7]

I was diagnosed with IBS when I was 16. In 2011 I was diagnosed with Crohn's Disease. I was put on Pentasa. I took the Pentasa twice a day and went on with my life, social drinking, eating anything I wanted, etc. without any symptoms that I knew of. (no care in the world) Just this past February I was told I need another colonoscopy to check on things. Well, my crohn's is active for the very first time. I started 6-MP this past Saturday and will start Remicade on 3/8/17. My hardest thing is my diet. I just can't get it together but I really need to.
Do you guys have a list of foods that you stick with? :sign0085:

Everyone is different but I particularly have to stay away from gluten, dairy and caffeine.

 

[ronroush7]

Have you tried a food diary to find out what foods upset your gut?

 

[cmack]

A food diary is a great idea, then you have your own "safe list". Ron is right we are all different. You have to try things that you know are OK first, then add one different item at a time/day. Otherwise it is impossible to know for sure what caused the trouble. I think everyone has to make a safe list of their own. If you tried what I eat it may make you ill and vice versa. My post above was just a general guideline of things that you could experiment with.

 

[GI Jane]

Ok....fine....I'm drinking water....hardest part for me.....but I do love my tea.

 

[cmack]