New to Crohns

Also, I do SCD, which is grain, processed food, sugar, starch and some other stuff free. I believe it is what has saved me. So based on my own experience I believe that diet plays an important role and that if you can figure out the best diet for you, it can really help. If you decide to try diet I suggest reading a lot. I bought all the books before I changed anything. After reading tons, I choose a path that I felt would work. I did it for 8 months before I got results. I tell you this confirm 1) big diet change is a ton of chage, work,  impact and for most, you need all the info to make such a big change and 2) although some get quick results for most it takes time to figure out what works for you and to let natural healing take place. I am so glad I stuck with it, cause at the 7 1/2 month point with no progress I was about to give up

best of luck finding a healing path

Dave

charlie11 said...
Hi, 4 months ago i was diagnosed with Crohn's disease. I am 24 years old (female) and my body seems to love chronic illnesses - epilepsy, poly-cystic ovary syndrome and now CD. I'm trying to stay positive but my smile is wearing thin. My symptoms are starting to weigh me down because I'm scared to get up or leave the house, nervous that I'll need to 'run' at any time. I'm tired all the time and have had to stop eating some of the foods I love as they aggravate and the consequences are not so much fun. My doc put my on a medication that I had an allergic reaction to - my liver rejected it - and she is now at a loss as to where to go. I have been told my options are steroids or Imuran with all of it's lovely side effects - "you'll need to have weekly blood tests to check for liver/kidney function, avoid the sun due to photosensitive and keep a look out for risk of Lymphoma". I realise that most people on this site are going through the same if not worse than me so I hate having a whinge, but I am just looking for some advice, something practical; how do I help myself win the little battles when it is all I can do to cry... I guess its all just raw and I'm scared...

I'd suggest, if you haven't already, reading about Crohn's on informative websites (like CCFA, for example). Talk to your doctor about drug and diet options. I always talk to my doctor before adding any over-the-counter supplements.

For me, other meds have worked to keep me in remission, but I've always needed a short course of steriods (6-8 weeks) to put me is remission. Within a a few days, the steriods give me more energy, better appetite, fewer symptoms, and overall feeling better. Yeah, the side effects start to suck after a couple of weeks, but it is what I need to get into remission and it only lasts a month. Sometimes the steriods themselves is all I need for energy...sometimes the doc finds via other tests that my iron counts are low. 

There are the anti-TNF drugs (Remicade, Humira, Cimzia) that you haven't mentioned, though carry some of the same risks as Imuran. Instead of a pill, you take these either intravenously or via self-injection. I have been on Remicade (IV) in the past and am currently on Humira (injection).

I was on 6mp (similar drug to Imuran) for over a decade. I was allergic to Imuran and couldn't take it. Why do you have to have weekly liver/kidney tests? Is it because of interaction with your other drugs/conditions? If I recall, when I first started 6mp, I did have to take blood tests every month at first, then every 3 months, then every 6 months.

You will find a treatment that works for you. You won't be confined to home. You won't have to avoid the sun like a vampire. I'm an outdoors person and have found on these meds just to make sure to take breaks or be outside in partial shady areas, use plenty of sunscreen and drink plenty of water.

There are a lot of things about this disease that sucks. I don't think it is immature to say that. In fact, I find that just saying that it sucks (or even saying it in even worse language than that) is sometimes therapeutic for me.

I think this strikes a lot of people in similar ways emotionally and socially. Check out the story I linked to yesterday, if you haven't already. It is kind of a long read, but is a well-written perspective of someone with IBD for the past 10 years. 

https://www.healingwell.com/community/default.aspx?f=17&m=2578723

As for dating and Crohn's, well, Crohn's certainly isn't first date conversation material. As the relationship evolves, there does come a time when those sort of things are discussed. There are a number of different ways to approach it. What I believe, is that the reaction and action of the other person goes a long way to vetting out whether that person is long-term relationship material. Here's how I look at it, though unforunately, this doesn't eliminate the stress or worry of telling him about Crohn's:

A lot of people take vows of love "in sickness and in health, in good times and in bad" but never really face sickness and bad times until some years after the vow is taken. If your mate understands your disease or maybe has even ridden out a flare with you, then you (and he) know when you take that vow how he will actually handle "in sickness and in bad times." If you are having medical issues during the time you are dating, and they are not supportive or able to handle these kind of issues, then I think it is a bit of a blessing to find that out while you are dating than later in your relationship.