A Sponsor's Advice for a New IBD Patient

[sawdust]

I had a few things I was planning for the upcoming newsletter that didn't really come together as planned, so I hope we can pull together as a community here and do our own thing instead.

The end goal I envisioned was a simple and useful guide for new IBD patients; something that can be taken with them to their GI appointment and discussed between the new patient and his or her doctor. I had a few ideas about this, but it's probably better not to steer too much and see what we end up with here.

Please pretend for a minute that a good friend or family member just got a Crohn's or Ulcerative Colitis diagnosis and phoned you for a little direction. Please reply with the 3 most important questions you think he or she should discuss with their doctor and the 3 most useful things you've learned through your experiences.

Don't worry if others have already given similar response(s), as I hope our discussion of it can be helpful. Also, any repetition of questions or lessons learned will show a pattern of usefulness. Thanks!

 

[Loriebird]

Three most important questions:

How is this going to affect my living a normal life?
What are the best treatment options for me?
What kind of diet do you recommend to keep my symptoms and weight under control?

Three most useful things I learned
1) If your doctor isn't getting you the results you want, don't be afraid to immediately change doctors or get a second opinion. You need someone who believes he can make you better and who is going to be aggressive in making that happen.
2) Never put your career above your health - it is so important to take time out to heal, and you and your job will be better for it in the end.
3) Don't feel guilty. You can't blame yourself for being human, for not being a doctor, and for not understanding what is happening to your body. I've found that I have a really poor judgment of pain and often don't realize when I getting sick until it is serious - you're human, and you only know what you know.

 

[Wesley]

Great advice Loriebird...thank you!

 

[Nyx]

1. What are my treatment options? (and associated side effects as well as the effectiveness of each med)
2. Depending on the person and what tests they've had done, I'd ask if any further testing needs to be done to determine the extent and seriousness of the disease.
3. Will I be facing surgery? As as part of this question, I'd ask for the truth about the various surgeries.

I'd only add #3 because had I known that the option for surgery was open to me, I'd have taken it rather than waiting till my sigmoid colon burst and I had emergency surgery.

Hope this has been helpful

 

[sawdust]

Here are mine. It's difficult.

Be Sure to Know the Answers to These Questions:
1. How will this affect my life?
2. What treatment do you recommend for me and what is the measure of success we should expect?
3. What can I do to make sure that I am being a "good patient?"

Lessons Learned or Advice:
1. Be open and forthcoming with your doctor. While you may have some apprehension talking about some of these things, they're commonplace kinds of symptoms, body parts, etc to your GI. He or she needs to know all the details, "yucky" and all, so to know the best ways to treat you, now and ongoing.
2. Know thyself. Each patient seems to vary a great degree and "normal" doesn't seem to be nearly as tight as you might think. The effort necessary to become an "expert on yourself" will help daily life and communication with your doctors.
3. Consider support. Joining a support group or a forum like this one might be helpful. Whether you decide that you need support right now or not, it can't hurt to discover what's available should the need arise.

 

[sawdust]

I apologize for the shameful bump here, but I want to make sure we get lots of good ideas for the newsletter. Please have a look! tx

 

[LindaS]

The three most important questions:

1- what are the side effects of this medicine you are prescribing
2- what symptoms warrant a trip to the ER or at least a call to the doctor
3- what can I do to minimize the impact of this disease

The three most useful things I've learned:

1-predisone sucks. There is nothing that can be done but acknowledge it and try to cope
2- if you don't understand something the doctor says or if the doctor doesn't explain something to your understanding, ask and ask again. Don't settle for half answers, because it is your body and your health
3- If you don't like your doctor, get another one. The most important thing to me is that my doctor is a partner with me in my health.

 

[Mumof4]

1. Why are you recommending this particular course of treatment, are there alternatives?
2. Where can I find practical advice and support to help come to terms with my diagnosis?
3. Is there anything I can do to apart from this treatment to help myself?

1. Educate yourself, learn as much as you can about your disease.
2. Do not rely on doctors being right, if you are unhappy ask to see someone else or push for tests, and only ever trust a GI to see you, not a general physician
3. Crohn's Forum rocks and may well save your sanity.

 

[David]

Bumping this to see if we can get some additional responses

Thank you!

 

[outlier]

I suck at communicating with docs so i use these documents
https://docs.google.com/previewtemplate?id=1R1mMvNrZP6qGatQekFhj71X1hR-TKOAInaPFWpsHmcY&mode=public
https://docs.google.com/previewtemplate?id=14lFsQbP_HtHSLZdFNayczRmuQOixboYpZBQ1BJoyHxc&mode=public

1. what other symptoms could i have (not in the intestine)?
b. what eye doc, rhematogist or other specialists do you have a relationship with?
2. what is the best way of communicating with you (phone, email, coming in)?
3. how can i getting a fast appointment (there is always a secret time) when i need one.?

 

[happy]

Three most important doctor questions:
1. What specific tests/clinical findings/signs/symptoms showed the disease and how will these be monitored in the future?
2. What are all of my treatment options and the potential problems/side effects of each and the benefits of each?
3. What is the process to follow if/when I need help in the future? Who do I talk to--the IBD nurse, GP, GI? And how do I access them?

Three useful things I learned from IBD experience:
1. To advocate for myself through the 'system'.
2. To research what is the best treatment option for myself.
3. To resist pressure (kindly) from family/friends/health professionals who think that they know what is best for me and instead to do what I believe is best for me and my health.

Good thread!