Is IBD serious?

[user666555]

Posting on here for traffic.

Hello,

So my dad has recently been diagnosed with potential IBD (I say potential because the diagnosis is based on stool sample test, still awaiting a colonoscopy).

He has other health conditions (has had two heart attacks, a stroke, Sepsis earlier this year, diabetes, high BP etc).

Now the pending diagnoses of IBD. Is it serious? How is it managed? What causes it? Any help and advice is appreciated.

Thank you

For some people, IBD is only a mild illness. For others, it's a debilitating condition that can lead to life-threatening complications.

https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/symptoms-causes/syc-20353315

crohnsandcolitis.org.uk/about-us

My cousin has ulcerative colitis. Her symptoms were horrific but once she got in meds she felt a whole lot better. She has to obviously keep up this maintenance dose, watch her diet and has her blood monitored regularly, but she is doing well. Unfortunately 2 years after the uc diagnosis she got diagnosed with RA but again, she manages well and still works etc.
Hope this helps and please try not to panic or Google!

yes it is serious, however there is a lot of medication now that makes such a difference. I've had surgery and am on immunosuppressant drugs but am in full remission and super healthy now so it can be managed

I'm late 50s and was diagnosed with IBD earlier this year. It's a really complex disease treated with aggressive drugs, the side effects of which can be very unpleasant, for example, I've lost all my hair.
As far as I can see, everyone's experience with the disease and the drugs is different so I'm not sure you'll get much help from other people - you'll just have to see how he gets on. They'll start him on one drug, but he might need to try a few to get one that works with minimal side effects. The drugs are infusions so he'll need to go to the hospital for half a day every 8 weeks.
It's a life long disease without, a cure so he'll be on the drugs for life.
My drugs have made the disease manageable, but it's not gone away completely. I now inject at home so go to the hospital much less.
The drugs are immunosupressants, so you need to be careful around people with infectious diseases. He'll probably have to change his diet to reduce insoluble fibre.
You're best bet is to wait for the colonoscopy and see how extensive the disease is in the bowel and take it from there.
Wishing him all the best.

Yes it is a serious illness. My DD was diagnosed at 12 and when she first became ill pre diagnosis it was horrific and she nearly died because she became ill during lockdown and it was so difficult to see a doctor.

Eventually I broke down and sobbed on the phone to the GP receptionist who
had told me a face to face appt wasn't possible and she reluctantly agreed to book us in.

I'd taken her to A&E the week before and we were fobbed off and sent home with anti sickness medication.

DD was so ill by the time we got in front of the GP that her body was shutting down and she arranged an emergency admission to hospital where she spent a week on a drip before being transferred to Gt Ormand St for scopes.

Now four years on she is stable but it has been a difficult few years. We have been so fortunate that she hasn't needed any bowel surgery.

Treatment was initially steroids and immunosuppressants but she is now on infusions of infliximab every 6 weeks plus immunosuppressants to stop her body building antibodies against the drug infusions.

It's also not an illness that only affects the bowel. It has made her extremely tired , she has joint and back pain and juvenile arthritis in her wrists. Even her eyes have been affected.

I had no idea how serious this disease can be until we were faced with it.

Ps what they did for me was a 3 month course of steroids to calm everything down and then switched me to the infusions to maintain. If he already has complex health issues you'll need to keep a really close eye on his meds to make sure there are no bad interactions. My experience is the doctors don't do this very well.

It can be serious. It tends to be worse in people diagnosed as children. My DD was very unwell by the time of her diagnosis; I was sure she had leukemia. She could only walk a few meters without gasping for breath, was grey with dark eye circles, and skeletal.

Now 4 years on she is a healthy weight on self injecting medications every fortnight and daily immune suppressants. However the nature of the disease seems to be that it finds its way around the drugs, or you develop antibodies and have to stop taking them. However the science in the area is amazing and for the first time I think there is the possibility of a cure in DD's lifetime.