What is one thing that you know now that you wish you had known when you were first diagnosed?
New to Crohn's Please HELP!
- Thread starter BreakingCrohns
- Start date
Help Support Crohn's Disease Forum:
You don't need to be the sickest Crohn's patient ever to get the best treatment available /really good treatment - basically don't put up with lots of symptoms just because you know or are told other people have it worse.
Great point and I completely agree! Everyone's Crohn's is different. Don't let a doctor tell you to wait a symptom out or they will treat when it gets worse.
- Joined
- Feb 2, 2015
- Messages
- 142
If you're a new diagnosis, make sure you get seen very soon and often. Also, run to your library or Amazon and get out a bunch of books on Crohn's and find out what's what. I've only been diagnosed since Dec., so I know. A really good book is Crohn's for Dummies. Simple, straightforward and covers everything. make sure your husband reads up on it as well, so he can be supportive. Best of luck to you.
I also wish that I'd been told what kind of Crohn's I had (in my case stricturing as opposed to inflammatory or fistulizing, although I realise there can be some crossover) and which parts of my bowel were affected when I was first diagnosed. It would have helped me understand that my symptoms were different (and not necessarily less severe) from other people with Crohn's sooner and also the particular risks that I faced with the disease.
It sounds obvious, I think, but at 17 no one said anything much to me other than that I had Crohn's. With hindsight I'd have appreciated it if someone had said "You have lots of strictures and they're throughout your jejunum and ileum and this is already a more complex presentation of Crohn's."
Not that I'm trying to contradict my earlier point about each of us requiring very good treatment whatever 'mild', 'moderate' or 'severe' classification we're given, because I think that's really important especially as it seems these classifications aren't terribly useful with 'mild' cases progressing to 'severe' and that being more likely to happen with less aggressive/appropriate treatment.
But I don't think that I understood that these other complications that I heard of were not signs of more severe disease but rather a different type of Crohn's. And I certainly felt that I was less deserving of intensive monitoring and escalation of treatment and even just plain old concern, not just because my doctor (who was a BAD doctor) would say things like 'you're not sick enough for enteral nutrition, that's only for the sickest patients' WRONG or 'you have Crohn's, you'd expect to be in pain, you're on medication so I don't want to hear about it, there are sicker patients than you' ALSO LARGELY WRONG!! but also because I saw thinner patients at the hospital and I'd put on weight on steroids, because people told me of their friends and relatives who had been hospitalized with Crohn's and I never had been.
I think information like that would hopefully have allowed me to put my Crohn's into perspective alongside the experience of others and those second and third-hand experiences that were shared with me and to not feel like I should just soldier on. I think it would at least have allowed me to question the choice of budesonide and pentasa for my treatment, although it is so much easier to know that now with all the information available to us on the internet.
That turned into a long story about me but, yes, what I really wish I'd known was that it is important to understand the presentation of your individual type of Crohn's and understanding how different the manifestations of Crohn's can be.
It sounds obvious, I think, but at 17 no one said anything much to me other than that I had Crohn's. With hindsight I'd have appreciated it if someone had said "You have lots of strictures and they're throughout your jejunum and ileum and this is already a more complex presentation of Crohn's."
Not that I'm trying to contradict my earlier point about each of us requiring very good treatment whatever 'mild', 'moderate' or 'severe' classification we're given, because I think that's really important especially as it seems these classifications aren't terribly useful with 'mild' cases progressing to 'severe' and that being more likely to happen with less aggressive/appropriate treatment.
But I don't think that I understood that these other complications that I heard of were not signs of more severe disease but rather a different type of Crohn's. And I certainly felt that I was less deserving of intensive monitoring and escalation of treatment and even just plain old concern, not just because my doctor (who was a BAD doctor) would say things like 'you're not sick enough for enteral nutrition, that's only for the sickest patients' WRONG or 'you have Crohn's, you'd expect to be in pain, you're on medication so I don't want to hear about it, there are sicker patients than you' ALSO LARGELY WRONG!! but also because I saw thinner patients at the hospital and I'd put on weight on steroids, because people told me of their friends and relatives who had been hospitalized with Crohn's and I never had been.
I think information like that would hopefully have allowed me to put my Crohn's into perspective alongside the experience of others and those second and third-hand experiences that were shared with me and to not feel like I should just soldier on. I think it would at least have allowed me to question the choice of budesonide and pentasa for my treatment, although it is so much easier to know that now with all the information available to us on the internet.
That turned into a long story about me but, yes, what I really wish I'd known was that it is important to understand the presentation of your individual type of Crohn's and understanding how different the manifestations of Crohn's can be.
- Joined
- Oct 18, 2012
- Messages
- 4,402
That there are many illnesses that are a lot worse than Crohn's.
Though I actually already knew that by the time I was diagnosed. But earlier, when I first started getting digestive symptoms, I thought that nothing could be worse than having something so embarrassing.
Though I actually already knew that by the time I was diagnosed. But earlier, when I first started getting digestive symptoms, I thought that nothing could be worse than having something so embarrassing.
- Joined
- Sep 22, 2008
- Messages
- 683
That you need to find a doctor you can trust with decisions about your health. Don't go off your meds because you are in denial because you WILL pay for it. Thirdly, just because diet is not the popular opinion of treatment doesn't mean that it never works for anyone ever.
- Joined
- May 10, 2011
- Messages
- 144
Just because you haven't had any major symptoms in a while doesn't mean everything is fine. I thought I didn't need mine and like Crohns08 said...YOU WILL PAY FOR IT!! I learned the hard way. By the time I went back on my meds it was too late and they didn't do any good. I spent almost a year in the hospital fighting for my life.
Take others advice but also kinda test the waters. What works for someone else may not work for you.
You know your body better than anyone. Even your Doctor. If you don't feel comfortable with what they are telling you or the treatment you are getting, get a second opinion.
Take others advice but also kinda test the waters. What works for someone else may not work for you.
You know your body better than anyone. Even your Doctor. If you don't feel comfortable with what they are telling you or the treatment you are getting, get a second opinion.
I wish I had understood to have a healthy lifestyle, including nutrition and physical activity.
- Joined
- Feb 2, 2015
- Messages
- 142
Like Lady Organic, I am getting there as fast as possible, although I do eat red meat from a local organic farm. I am hoping the less garbage nutritionally I put in, the better chance my gut and I will have. Find a diet and supplements that work for you. Be well educated in your disease.
- Joined
- Jan 18, 2014
- Messages
- 81
When you don't know much about Crohn's, you read about the classic Crohn's symptoms and then if you don't have them, you think you are fine.
I wish that I'd been told that stricturing crohn can be symptom free, until it is too late and you need a surgery. I stopped to be monitored by my GI for a few years, because I had no symptom, then when I started to have symptoms again and feeling bad, and after meds put me in temporary remission, the MRI showed another stricture :-(
I wish that I'd been told that stricturing crohn can be symptom free, until it is too late and you need a surgery. I stopped to be monitored by my GI for a few years, because I had no symptom, then when I started to have symptoms again and feeling bad, and after meds put me in temporary remission, the MRI showed another stricture :-(
