Crohns or colitis

[Grandson1]

I have been diagnosed with indeterminate colitis. Just recently I seem to have other signs pointing towards crohns and also feeling really unwell. Do you just have to carry on taking the medication or if you feel unwell do you have to see the doctor again. I was discharged from my 6 monthly check ups at the hospital and only to contact my consultant when necessary.

[FRreedman]

I get really annoyed when someone, with a lifelong illness, is discharged, from care, but with an open appointment, because, we all know, you are going to need care and treatment in the future. To answer your question: Should I contact the doctor.... ? " The short answer is yes you should. You should always seek medical advice if your illness/disease/condition changes, as your medication may need changing too. I will leave my rant there, because it does answer your question. Good luck.

[Grandson1 in reply to FRreedman]

Thank you 🙂

[Grandson1 in reply to Grandson1]

I saw my doctor as you advised. He said I need to see the consult again as my medication might need changing. Phone hospital and told need a letter from the doctor so seems like I’m back to square one

[jakelayla]

Hello Grandson 1, I understand how you feel, it can be very confusing for recently diagnosed people. I am in the same situation, was diagnosed in April, saw gastroenterologist twice, and now don't see him for another year. I would advice you to talk to your gp about any concerns, problem is some of them seem to have very little knowledge about ibd, and seem almost frightened of standing on toes of hospital Dr. If you are very worried, you could try contacting your hospital and see if you can talk to his/her secretary, or better still a nurse specializing in this illness. Hope all will be made clear, and you feel better soon.

[Grandson1 in reply to jakelayla]

Thank you 🙂

[Dg54vuf]

Hello Grandson1, it took around 10 years of various tests and procedures for my crohns to be diagnosed.

During that time, a nurse gave me some advice that I will pass on to you. She told me, that as the NHS is so stretched, the people who get seen to are the ones who make a fuss. If you feel ill, get someone to make a fuss for you.

[Tanyamm32]

Do you have access to an IBD specialist nurse ? They are a godsend for me. If I have concerns I can call their helpline, leave a message and they will call me back to discuss. Usually within 24 hours They can prescribe or arrange appointments if required. Perhaps worth checking at you local hospital or phone Crohns & Colitis UK helpline - they also have a list and contact details.

Hope you get the answers you need soon.

T x

[Grandson1 in reply to Tanyamm32]

Thanks for your help x