Posted by Helen on: 03.26.2008 /
A few months ago I wrote about being diagnosed with Crohn’s Disease. I wrote about how it seemed like avoiding certain foods made my symptoms go away.
Since then they’ve been back in varying degrees and I haven’t yet been able to establish a clear link between what I eat and my symptoms. Which makes it hard to continue with food restrictions. (That and Easter chocolate in the house - although of course I could just say no)
Because I’m continuing to have symptoms and because of what a test in January showed about extent of the disease I’m going on different meds: Entocort short-term and Imuran longer-term if blood tests indicate I can take Imuran.
I’m finding there’s a significant emotional component to all this. I don’t like being on medication - it’s scary because I don’t know what else it will do (short term and long term) as well as what it’s supposed to do. I was pleased to be able to get off meds for Bipolar and here I am back again, taking meds.
On the other hand the complications of Crohn’s can be severe and I’d rather avoid them. (They are scary enough to convince me to take meds) Imuran works by suppressing the immune system (because Crohn’s is thought to be caused by the immune system attacking the wrong things) - that scares me because obviously that will make me more susceptible to illness in general.
I realized part of the fear is that I don’t know how I will feel on the new meds and that will go away once I try them. I started Entocort yesterday and so far I feel ok - no immediate seriously problematic side-effects - so at least that fear is behind me now.
And a lot of the fear is in the ‘worry’ category which is a waste of time. My symptoms are in the ‘inconvenient and mildly painful’ category rather than significantly affecting my daily activities. I need to remember and appreciate that rather than worrying. Many people don’t have that option - they have health problems that are way worse than mine.
I’m still open to exploring whether food choices make a difference. I am still avoiding some things but not very consistently. The doctor said eating healthily is always advisable but there isn’t good evidence that food choices can induce remission - so she recommends trying to get there with meds then I can experiment with foods if I like. That makes sense although I’m still unclear how it will go - because if I’m doing fine why would I restrict foods except for general health reasons? And if I’m not she will probably want to change my meds…
(I wrote a bit about this on my personal site also)
Comment by: karen
1 03/26/08 9:00 AM | Comment Link |I’m sorry to hear that your symptoms are continuing, Helen, but I’m glad they are mild rather than severe.
I hope that the new medication is helpful and you are eventually able to coordinate it with a diet that reduces the more painful symptoms.
Comment by: Zoe
2 03/26/08 11:04 AM | Comment Link |Hi Helen,
As someone who has been there, done that with Crohn’s, I’d like to let you know that if you’d like to chat about it, please feel free to email me at the email I provided here.
Comment by: Eliza
3 03/26/08 1:24 PM | Comment Link |Helen, I too am sorry that your symptoms are continuing, but glad that they are annoying rather than debilitating.
Your doctor’s advice sounds quite reasonable, & once your symptoms are more quiescent, it may be easier to determine whether a particular food or food group causes symptoms to come on, rather than now where your symptoms are omnipresent but waxing & waning, whether or not you vary your diet….
Comment by: Julie Marie
4 03/26/08 5:59 PM | Comment Link |I’m adding my sympathies over the return of your symptoms, Helen, and hope those are controlled with minimal, mild side effects.
Comment by: Jim Henderson
5 03/26/08 11:32 PM | Comment Link |Nice to have a doctor in the house
Comment by: Helen
6 03/27/08 6:02 AM | Comment Link |Thanks everyone. So far I’m not experiencing any noticeable side effects from this week’s new medication and I’m hopeful that it will help. Yesterday was a fairly good day so maybe it’s helping a little already.
Zoe, I appreciate the offer - I’ll e-mail you.
Eliza, yes, it did make sense to me what the doctor said. I really like this doctor. She seems to have good knowledge of the latest research on Crohn’s - in fact she’s involved in some of it. And she’s the opposite of the first doctor I saw for this condition - she explains everything and she never does the ‘authority’ thing he and some other doctors have done to me. I.e. she doesn’t have the “leave the tricky stuff to me - don’t worry your head about any of this - just let me tell you what to do” attitude which I find offensively patronizing.
The downside of her being willing to explain and answer questions is, she runs late. But I know about that now so I took a book with me on Monday :)
Comment by: Jason Horton
7 03/27/08 6:04 AM | Comment Link |My mother (another Helen) also had Crohn’s. The disease unfortunately has no cure (at the moment) but is manageable. You have my sympathies. Are you planning on getting your children to adopt the same eating restrictions as you?
Comment by: Helen
8 03/27/08 6:42 AM | Comment Link |Hi Jason, it’s funny you should ask about my children. My daughter has been having stomachaches for about six months and I was afraid it might be related to what I have. We’ve been talking with her doctor about it and trying some things. She tested negative on any similar stuff to me which was very reassuring. Recent experiments with her eating are indicating she’s (currently at least) lactose intolerant and that’s the source of her stomachaches. So she is avoiding some lactose and sometimes taking lactase pills so she can eat food with lactose in. And her stomachaches have pretty much gone away and when she gets them, are after eating something like cheese pizza.
I don’t get stomachaches and I don’t know for sure if lactose is a problem although on the whole I’m limiting it since it often can be.
Anyway to answer your question I’ve always tried to limit the unhealthy foods my kids eat and have healthy choices available. But I wouldn’t restrict their foods unless they had some symptoms. My family understandably isn’t interested in participating in my current eating restrictions just for solidarity reasons :) (Although my husband was willing to substitute gluten-free flavoring in cooking when I asked - but I have pretty much dropped that due to lack of evidence that small amounts of gluten are specifically problematic for me)
Comment by: April Terry
9 03/27/08 2:19 PM | Comment Link |Sorry to hear about your health struggles, Helen. I have a coworker here that struggles with it, and it isn’t pretty at all sometimes. I hope that you will be able to manage it well.
Hang in there!
Comment by: Helen
10 03/27/08 7:31 PM | Comment Link |Thanks April. Yes, there’s nothing pretty about it :). Pretty much anything specific I say about it is TMI…
Comment by: Chadwick
11 03/27/08 7:39 PM | Comment Link |Helen,
Sorry to hear about the Crohn’s struggles. Just had my colonoscopy about a week ago. Glad it’s over with.
Wanted to let you know about a blog we just started and we are trying to get the word out to invite contributing writers and readers.
The blog is: http://www.confessionsofacrohnspatient.blogspot.com/.
I’d love to have you come over and write something every now and again. If you would be interested in writing, email me at dcparson@gmail.com. I’ll add you in as an author and send you the link so you can get in. Hope you’ll come join us.
You’re in our prayers.
Chadwick
Comment by: Helen
12 03/28/08 8:51 AM | Comment Link |Thanks Chadwick. I’ll let you know if I have time to contribute.
I’m having a colonoscopy on Tuesday and I’m not looking forward to Monday evening.