Just been diagnosed

[pidpol1985]

Hi all,

After 12 years (plus) with unexplained symptoms i have finally been diagnosed with small bowel crohns disease. My main symptom has been severe mouth ulcers. I do get occasional stomach pain and bloating but the symptoms in my mouth have been the worse. I am relieved to finally get a diagnosis but i am dreading the treatment in particular the steroids. Quite worried about the meds more than anything.

Thanks

[JA22]

I was diagnosed about 12 years ago after ignoring the symptoms for too many months. I’ve had a number of medications in that time. Some have worked for around 6 months and sone for less. I’ve now been on Humira for about 6 years and have never looked back. Don’t be disheartened if it takes a while to find the meds which suit you. It’ll happen. I also changed my diet quite dramatically and ate only fish, rice and water for 6 months. I firmly believe this was the start of my recovery in giving my body what it needed. I have been in remission for six years, bar one little blip last month, but that was due to stress and I’m back on track again now. I hope this helped and good luck!

[SORRELHIPPO]

I was diagnosed with Crohn's in the mid 1980's, drugs not as good then as they are now. The steroids were needed and yes they had a speedy and need food now, effect on me, but they worked. Needed to take stuff to protect the bone density and Drs are better at giving you that soon enough now. For some people (me for one) who have a real "high" on the steroids, there can be a "low" coming off, but if you ar prepared this can be managed. Try to keep your stress/worry levels down, as this does effect the Crohn's. I wish you well as you find the meds that work for you.

[FRreedman]

When you, first, had symptoms you were worried (what's wrong with me? Why me?) How you have been diagnosed, albeit with a rotten, pig of a disease, you are worried (how do they fix it? Can they cure it? Will it work?) How they will try to fix it and keep you, hopefully, pain free ( what are the side effects? Are they worse than not knowing? What do I do?).Without wishing to play down your diagnosis, please stop worrying. Firstly, I have had Crohn's disease for 42 years, and have had many rejections of my intestines. I have also suffered with mouth ulcers, but not too badly. The drugs that are used today are infinitely more user friendly than they used to be, and there are also a lot more choice of drugs, ranging from immunosuppressive through biologics and steroids. If you feel strongly about any particular drug or type of drug, please tell your consultant or GP, and they will try to find an alternative. Please, if they are adamant about a particular drug or class of drug, give it a try (3 months) and keep a diary, so you can then, logically, argue your case. Remember, the final decision is always yours.

[Monkeypuzzler]

Sorry to hear you have been suffering for so long. Hopefully they will find meds that suit you and give you relief without side effects. I would be interested how you were diagnosed and were your initial symptoms mouth ulcers or other things going on like weight loss, nausea, bowel issues etc? Thanks and good luck to you.

[pidpol1985]

Hi all, thanks for all your advice and help. Ive always had problems with my digestive system, IBS like symptoms on and off for years. I was 12 when these symptoms started im 32 now. About 6 years ago my doctor thought i had a peptic ulcer, was getting burning nausea. I lost quite a bit of weight at the time because i couldnt eat properly. He gave me treatment for that but it didnt work. Over time it calmed down but the ibs symptoms carried on. My ibs like symptoms have been very mild compared to my mouth ulcers. They get so bad, i have seen many doctors over the years and had so many tests. Gastro doctor sent me for colonoscopy (normal) endoscopy (normal) MRI (possible inflammation). I got diagnosed by a small bowel capsule endoscopy that picked up ulcers through out small bowel and patch of inflammation, dr said its crohns. Hes putting me on entocort budesonide (any one got any experiences with this?) and i have to go for an infusion soon.

Thanks