Fuck - dd about to be diagnosed with IBD. Help me.

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DD has been seeing a consultant (gastro bleeding, diahoria, urgency etc) and has had tests. Has been told to come in tomorrow as IBD.

Poor dd is only 18.

How serious a disease is it I cant seem to find out? Will she be able to work? Will she always be this poorly?

What happened when you were first diagnosed?

Do you know if it's Crohn's or Ulcerative Colitis?

Start with Crohn's & Colitis UK website

Now that she has a diagnosis, she can start getting the treatment she needs.

DH has Crohn's (and is also an expert in the treatment of the condition). He works full-time, travels a lot and runs marathons.

However, each person's experience is different.

I was diagnosed 5 years ago but had been ignoring my symptoms for a few years before that. I’ve worked in the same job since before my diagnosis and they have been brilliant at supporting me.

It’s important to get the meds right because that improved my quality of life drastically and also get vitamin levels right because some can’t be absorbed properly when you have IBD.

She'll be prescribed some medication though, which should usually make her feel better. It's one of those ones that can be kept under control once you have the right medication, but occasionally comes back from time to time. Bear in mind that all the problems she's had so far have been without medication.

As with most medical conditions, the worst case scenarios are always on the internet because the most ill people all for the most help. The people doing well are out there living their lives and not posting about it online.

My partner has Crohn's and colitis. He's mostly fine other than struggling to gain weight. Lots of different medication before finding one that worked, then he developed antibodies to fight that drug so is on a new one that seems to be working. Unfortunately along with that illness comes chronic fatigue syndrome which is mostly managed with vitamin injections. It's definitely about what works as an individual so she shouldn't be scared of trying different things.
He works full time, is a brilliant dad and has a good social life. So hasn't affected him in that way.

Hi OP. Another Crohnie here 🙋🏼‍♀️. Sorry to hear about your daughter. Be positive. Mediations and treatment have improved drastically in recent years and continue to improve.

I had symptoms from age 22. Diagnosis at age 23 when I was admitted to hospital and needed an emergency bowel resection. No stoma.

Had a bit of a rough time on and off following this up until two years ago. I was constantly on steroids. Was told following another colonoscopy that my Crohns was moderate and both my small intestine and large intestine were affected. I needed iron infusions etc and was in constant pain. Severe weight loss and fatigue also.

Seen a Gastro and started immunosuppressant medication approx 2.5 years ago. Have been in remission since and I've never been healthier. I've been well enough to have a baby this year. I had a very healthy, normal pregnancy and continued to take my medication throughout pregnancy and breastfeeding.

I am well aware that it can flare up again. I will cross that bridge when I come to it. I know the medication is not without risk. However it is much better than constantly taking steroids. I am so grateful that I have quality of life at present.

Like you, I assumed the worst when I received my diagnosis. I had only really heard about very severe cases. As PP has said, those are the types you are most likely to read about.

If anything, Crohns has made me healthier. I do not take my health for granted. I eat a healthy diet, I exercise and I have cut down on alcohol.

Read Crohns and Colitis UK website. Great source of information.

Best wishes to you and you daughter

Ps I retrained in my chosen career a few months after my diagnosis. It never held me back. I received a first class honours degree. I work full time (off on maternity leave at present)

I have Crohn's I was diagnosed at 21. It was initially treated as food poisoning. It did take a lot of trial and error before they got me on the right medication. I had to have two endoscopies: a sigmoidoscopy and a colonoscopy. Then a barium flow and lots of blood tests.

Sabrina congratulations on your new baby.

Get her to watch Hannah Witton’s Youtube videos. She’s a prominent sex and relationships Youtuber with ulcerative colitis and had a big flare up earlier this year resulting in a stoma.

I don’t have any personal experience but found her documentation and discussion of it on Youtube and her blog to be honest and frank but also positive. She is in her mid 20s and just moving in with her boyfriend so would be a lovely positive role model for your DD.

Thank you everyone. Am feeling a bit panicky and this has calmed me down somewhat.

I just so hope she can have a normal fulfilled life.

I'm now concerned about the increased risk of bowel cancer, along with megacolon.

The consultant hasn't said yet whether it's UC or chrons, but from googling it sounds more like UC.

IBD is serious and lifelong. However, medical treatments and surgical advancements in the last 15 years have been rapid and there is no reason why your DD shouldn’t have a positive life going forward.

There will be myriad tests and investigations over the years, there will be low points while she and her consultants find out what works best (immunosuppressant drugs have been game changers for IBD in the last 10 years) and she may also need surgery at some point. Fatigue will often be an issue.

But there are thousands of us out there living a full life with children, full-time jobs, active hobbies, with and without stomas. Good luck to her, I hope she has excellent treatment and positive outcomes.

@TheThirdOfHerName thank you. So delighted as there was a time I felt like I would never have Crohns under control
and I worried that I wouldn't be able to have a baby as a result.

OP I tell myself that at least if I do get bowel cancer it will be picked up more quickly. Bowel Cancer survival rates are high in the UK.

My son was nearly 9 when he became unwell overnight. Had never had pain/diarrhoea/illness really before. Over the following 4 weeks he became desperately unwell, He was spending 18+ hours a day on the loo, vomiting anything he ate/drank, and passing copious amounts of blood/pus/mucous. He lost so much weight and looked horrendous. Eventually a GP insisted he was admitted, and he was diagnosed with severe ulcerative colitis. Unfortunately the steroids didn’t work, so he started IV infliximab.
He has now started secondary school, and hasn’t been unwell since! He eats what he wants-finds apple or orange juice don’t agree with him, plays sports, goes to parties. It has no impact on his day to day life.
We still have to take oral meds daily, and IV meds every 8 weeks. But it seems to be easier to control these days.
I’m sure your daughter will have a wonderful life!

Having an actual diagnosis is a huge step towards fixing her quality of life and ensuring good care/treatement going forward. This should be a "hurrah!" not a cause for panic.

I'm now concerned about the increased risk of bowel cancer

I think there's a screening programme for this. DH has regular colonoscopies.

I’m so sorry to hear about your DD, it’s such a worrying time but try not to google too much.

I was diagnosed at 16. I was very poorly for the first 4 years,in and out of hospital. If just took a long time to find the right medication for me. There’s a lot of choice and it’s a case of finding the right fit.

I’m 37 now so over 20 years in and I’ve never looked back. I’ve been in remission for 10 years now.

I’ve done my a levels,a degree. I’ve had a successful career. I’m married to a wonderful man and we have a lovely son together.

My advice to give you to pass onto your daughter is to support her in feeling good enough. She may well have times when she can’t go out,she might have to cancel on people or she might feel that she can’t reach her potential. It really helped me to cut out the guilt of ‘letting people down’ just do what you can,when you can and sod the rest. It’s not a race, try not to compare yourself to others, you’ll get there. My mantra is that life’s not about holding the best cards but in playing the cards you hold well.

She will probably find herself in 10 years or so surrounded by the most wonderful,loyal,supportive,amazing people. IBD really acts a great filter to life’s knobheads. My husband is just the best as are my friends. The ones not worry knowing just fall by the way side.

She will be fine,she’ll laugh and love and live life to her best ability. It will really help if she can take extra special care of herself-to rest and nap when needed,try to eat things that suit her,quit smoking (if she does) and I don’t drink alcohol but that’s just my preference,she might find it doesn’t effect her.

Crohn's & Colitis UK has local groups, groups for young people, a Facebook page and an Instagram account that she might find helpful.

My husband has UC and leads a very normal life. Hope all goes well for your DD