Question about what's supposed to happen after diagnosis

[lormel]

After suffering some recurring activity of Crohn's (bouts can last 6 weeks) regularly over the past 4 years I recently went to a GP thinking I was having "flare ups" with intense pain in the bowel & back,abdominal swelling, noisy bowel,diarrhoea & constipation. The doctor diagnosed constipation and gave me a ton of laxatives (which I could only take for 2 days) and asked about my last visit to the clinic. As I've never been to a clinic in 25 years (since diagnosis) I was unaware of any such clinic.
So I am wondering if it is usual to have any specialist aftercare after diagnosis.
I also have AS , arthritis & epilepsy but do not have any specialist aftercare for these either. I am beginning to wonder if I have fell through a crack in the system somewhere.
I would appreciate any answers to my questions.

P.s. My recurring problems seem to coincide with my GP doubling my Sulfasalazine. I'm not sure if that's to blame.

 

[Cat-a-Tonic]

I'm not even fully diagnosed yet and I see my GI every 3 to 4 months. We assess my medications & symptoms and fine tune my treatment plan as needed, we discuss tests I may need in the future, etc. When you have illnesses like this, I feel like it's imperative to stay on top of things, and that includes seeing your doctor regularly.

If you're having flare-type symptoms, and it's been awhile, I would say you probably need some tests run to see what the severity of your illness is, if it's progressed, if you have scar tissue or strictures, etc. One thing I've learned is that you have to be an advocate for your own health because doctors won't necessarily do it for you. You know you're not doing well or feeling like your usual self, so get on top of those doctors and tell them what's going on and what you'd like done about it. Good luck!

 

[nogutsnoglory]

Unfortunately doctors are extremely busy and their offices aren't centered around compassionate patient care. It's a business, a huge business!

For proper care, patients need to be informed and empowered and on top of their condition and treatment plan. People who just wait or follow blindly are going to suffer in my opinion.

 

[Ihurt]

I agree, I mean you do have to be your own advocate. One thing I have seen with doctors is that you either have ones who are test happy and want to oder you every test under the sun( some not even nessasary and some even risky) or you have doctors who just slough you off and not take you seriosuly at all. You are going to have to kind of weigh your own personal situation and go by how you feel. You will have to tell the doctor your concerns and tell him/her what you think would be best for you. I mean and if the doctor recommends something you are not comfortable with, then you have to speak up and tell him/her. But yeah, when you are chronically sick, you are on your own.... I mean doctors are only good for writing out scripts and such it seems. They are not inside your body and they do not know what you are feeling everyday. You know your body better than any doctor or surgeon or anyone for that matter. Go with your gut instinct, it is usually always right.

 

[AlliRuns]

I was diagnosed in Nov and still have regular follow ups with my GI doc. I call his secretary if I need to be seen between visits or the Nurse Practioner or GP calls on my behalf. If I need something before I can get in to see the GI (they usually only see IBD patients on Fridays), the NP or GP will talk to my GI first before prescribing anything. I'm not sure if this is common practice, I go to a military clinic and Crohn's isn't something they see every day.

 

[lormel]

Thank you for the info. I should say that I do visit the Drs surgery regularly for blood tests etc & felt that I have managed my condition OK for 20+ years.
When first diagnosed my other medical conditions appeared at the same time so I was seeing several specialists for different conditions at the same time whilst in hospital. My arthritis was probably the primary concern as I had problems with walking and other daily things. The hospitals I attended both closed down shortly after that and it was prior to computers so everything was in the form of paper records.
Since getting a laptop and coming across this website I believed that the way things were for me was the same as for others.
The Dr I seen recently who mentioned the clinic is going to refer me to them. So I'm hoping they will be able to advise me concerning my medication.