You’ve been diagnosed with IBD…Now what?

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*Updated March 2017*

 

Today’s post is a guide for those who have been newly diagnosed with IBD. Post-diagnosis can be a scary place: a mixture of emotions from relief at diagnosis to utter bafflement at the array of conflicting information online- so I’ll cover lots of commonly asked questions and share lots of resources that might help. I hope you find this guide helpful! Remember that I cover all of these topics and more in my new book: Managing IBD: A balanced Guide to Inflammatory Bowel Disease– it’s a must for those recently diagnosed!

First up, what actually is IBD? How did I get it? Is it genetic/caused by diet/curable?

Ok, so put in a nutshell IBD is an autoimmune disease: these diseases involve the immune system turning on a particular part of body and attacking it. In the case of IBD it’s the digestive tract that gets this treatment, causing anything from pain, fatigue, weight loss mouth ulcers, diarrhoea, abscesses (but you probably knew all that, since you’ve most likely experienced 1 or more of these symptoms).

It’s not genetic in the sense that there isn’t 1 gene knocking about in our bodies that causes crohn’s (in the same way there’s the cancer gene for example). Yet there are definitely genetic predispositions and its likely that a combo of this+a trigger (which could range from an acute period of stress, a nasty tummy bug, an overload of antibiotics) that’s kicked it off. You can drive yourself mad thinking how did I get this? So the important thing to acknowledge is that it’s not your fault.

Now I’ve been diagnosed, how will I be treated?

Depending on the severity of your disease you may have been put on………..

  • A short course of steroids to quickly reduce inflammation. You’ll feel better quickly but they aren’t a viable long term med.
  • An immunosuppressant such as Azathioprine to suppress the immune system. These surpress your immune system in the hope that it prevents it from attacking the digestive system and thus preventing further inflammation. These take at least 6-8 weeks to work.
  • A biologic. The strongest of the 3, biologics such as infliximab block the TNF-alpha protein that’s made by your body. With people who have IBD, there’s too much of this protein which can then cause attack mode. Blocking the protein should therefore block the attack mode.

Of course, there are other pathways too. You might need to have surgery to remove parts of the digestive tract that’s badly damaged or extra supplementation of key nutrients that you’re missing out on (such as Iron and Vitamin B12). It might seem that your doctor is giving your really strong medication for mild or less severe symptoms. That’s because many doctors are now treating the conditions ‘top down’; using stronger meds first in the hope it prevents complications further down the line.

Is there anything I can do to help myself manage the condition?

First of all, it’s really important to stay proactive. Try to read up on and educate yourself on the condition without stalking every IBD forum going. As they saying goes: ‘Knowledge is power but google is dangerous!’ (May have made that up but it’s true!) Instead make a list of questions to ask your doctor such as…QUESTIONSTOASKDOCTOR

It is very easy to get lost in the system, especially if you are NHS. Appointments with specialists are hard to get, so it’s important to make the most of them! No question is too stupid to ask, most consultants will appreciate you taking such an active interest in your health. Take a notepad with a list a questions and make notes as you go. IBD is such a widely varying disease that it is important to know the specifics for you. It’s also important you find out what services are available to you. The phrase ‘don’t ask, don’t get’ is apt here as unfortunately you have to be your own health activist to get things moving. But IBD nurses are a fantastic resource available at many hospitals.

Do I need to change my diet?

 Your doc might have said diet plays no part in IBD but that’s simply not true- since for many it can make a real difference in terms of symptoms and day to day management. However, it takes time and the most important thing is to start learning about food and keeping track of what you eat (I blogged here about a free app that might be helpful to use). Some useful reading material here might be:

Different Diets for IBD

Is Gluten Linked to IBD?

Is Milk Linked to IBD?

If your diagnosis is very recent, I would not recommend making big changes- since you will most likely be experimenting with different medications. Once things have stabilised a bit, it might be worth seeing a Nutritional Therapist to chat about your diet as they might be able to suggest some strategies to help you adapt. (Note: I am a qualified Nutritional Therapist; see the 1-2-1 online nutritional services I offer here)

Do I need to take lots of supplements?

 You might find you need to take supplements- some to help with deficiencies and others to help with your overall wellbeing. It is important you start slowly and work with your doctor- a good place to begin is to check your vitamin D, B12 and iron- since these are common deficiencies. Other useful reading might be:

IBD and Vitamin D

What Supplements are best for my IBD?

My Gut Health Shopping List

 

Where can I get support?

It is hard to talk to some people. It’s difficult to explain that no you are not just a little tired. No you don’t just have a stomach ache. Taking a vitamin is not going to make this go away. Sometimes all you can do with these people is just nod and smile because they’re never going to understand. But there are plenty of places to get support. I myself run a group focused on Healthy Living with IBD.  Of courses, there’s plenty more groups out there the main one being the Crohn’s and Colitis UK Facebook forum (this blog post on the best support networks for IBD might help). Depending on where you live, your local hospital might hold regular meet-ups too.

 Will my life change?

In a word: yes. The answer was more complicated than I could cover in a blog post and a lot more detailed than the standard ‘you can lead a normal life’ answer you’ll get from your doctor. Of course, on the scientific front there is a little evidence to suggest IBD shortens our life span or that those with it can’t have fulfilling careers and relationship. Yet despite this IBD will change lots of things:your relationship with yourself, with friends, your partner and your family. Most likely boozy nights out will be a thing of the past. You might not be able to do things at the spur of the moment all of the time. It might always have this disease in the back of your mind.  It is one of the reasons why I believe there should be more help for the psychological impact of this disease for patients. Useful reading on this:

My Experience with Counselling and IBD

Anxiety and IBD

 

There’s only one piece of advice I can offer: embrace it! Of course at first you’ll want to do anything but that and will feel considerable resentment for the restrictions it imposes on you (and that’s ok too!) But it can sometimes help to try something different rather than lament a past life. Swap nights in for cooking evenings with friends. Sign up for an online course to keep you busy during the times you are off work or retrain careers if your current one is too problematic. Accept that some friends that will just disappear. Let them!  Sometimes you have to embrace this ‘new’ life (however difficult it seems) or you can easily fall into a trap of frustration and resentment. Like everything it times time and eventually IBD becomes a part of you.

I hope this advice guide has helped anyone newly diagnosed with IBD. You can find all my IBD posts here., leave a comment below or add me on twitter if you have any questions or experiences to share! Remember you can also buy my book Managing IBD- (all the info on stockists here)

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