Gransnet forums

Health

Crohns Disease [title edited by GNHQ at OP's request]

(11 Posts)
Luckygirl3 Wed 04-Jan-23 22:40:21

A grandchild of 17 has just been diagnosed. They have lost lots of weight and are very pale. Steroids do not seem to be helping. Does anyone have experience of this illness?

JaneJudge Wed 04-Jan-23 22:43:55

It’s Crohn’s disease lucky girl and it can be well managed with diet and/or medication x

What a horrible shock

denbylover Wed 04-Jan-23 22:57:44

Hi, a friend of mine’s daughter has this. She’s found it challenging and worrying, but through research has found what works for her. It’s been largely trial and error. It’s taken a little while, as I assume each persons tolerances are different, but she’s a hit on a formula that very largely suits her. Good luck for your granddaughter, it’s not an easy time, but knowing what you are dealing with can help especially with diet.

Franbern Thu 05-Jan-23 08:33:26

Crohn's disease is an inflammation of the bowel. Very painful and debillitating. It cannot be cured, but with help can be managed.

Iam64 Thu 05-Jan-23 08:37:15

Chrohn’s is inflammation of the bowel. Biological and other treatments are effective in its management. This kind if auto immune condition is debilitating, depressing and exhausting - but good treatments help once diagnosis is made

Luckygirl3 Thu 05-Jan-23 08:49:09

Hi - yes I know it is Crohn's - I wrote the title in bed last night without my glasses on!!

Thank you for your responses. This poor grandchild has had so much to deal with: lichen sclerosus, ASD, gender dysphoria - it just goes on.

I went up to see them at the weekend and was so shocked at how they looked - so pale, and thin as can be. The steroid treatment is doing nothing. I hope it will kick in at some point.

I made the mistake of looking at the Crohns and Colitis support group website - it was not very supportive! I dealt with several patients with Crohns when I was working and had assumed that the treatments would be more effective now. Maybe they will find the right drug for them.

Luckygirl3 Thu 05-Jan-23 08:57:51

I have asked for the title to be changed.

Oreo Thu 05-Jan-23 09:41:41

Crohns can be treated, I know someone who’s had this for years.Medication and diet and lifestyle all needed.
No alcohol and no fatty foods for a start.
She lives a good life though and just got used to it.

MacCavity2 Thu 05-Jan-23 09:54:24

Sorry to hear about your granddaughter. I was finally diagnosed in my 20s over 50 years ago. Eventually found a brilliant gastroenterologist but still had to have an operation in 1992. It changed my life. I consider myself very lucky and thankful for the NHS.

Fleurpepper Thu 05-Jan-23 10:01:24

Sorry to hear this. Health issues for our GCs are so upsetting. But as said above, Chron's can be controlled effectively, although it does require strict adjustments.

Research is going on about some natural remedies- wormwood in particular.

Shelflife Thu 05-Jan-23 10:55:36

Luckygirl my heart goes out to you and your GD. Your GD has such a lot to cope with , LS is not easy to live with , gender dysphoria too!! You and her parents must be so worried. Chrons disease is complex and a very distressing condition. I do hope you are able to access support for yourself, you must be so anxious for your own ' child' and of course your GC - so double anxiety. I send you and your family lots of strength and good wishes for the future. Fingers crossed the treatment she receives for her Chrons disease will have a positive impact on her life. 💐💐💐