frustrated, non diagnosis after 4 years.

[PrincessPinky49]

Hi, im very confused and frustrated, as my 13 year old son, has had cronic bowel probs for nearly 4 years now. Reading into everything, im 99% that his symptoms are that of crohns disease. If i may, id like to list his symptoms, to c if anyone could give me any info. Abdo pains, porridge like diarrhoea, bloating, anemia, fissure, mouth ulcers, pains in both ankles, occassional back pains. Id be so very grateful for any help at all thanx x

[valletta]

I had something similar for 2 strait years. The diagnosis I got after 2 years was colitis. I still get it now & then & each time I get it for 3 months.

I hope that this helps.

Praying for your son to get better. It's an awfull feeling with the bloating.

Have a good day

[PrincessPinky49 in reply to valletta]

hi thanx so much for ur reply, we were told at the hospital it wasnt colitius, but sometimes they are wrong, thanx again will bear it in mind x

[JediReject]

Hi PrincessP , Im very sorry to hear of your young sons' problems and I can feel your frustration as I happen to know that Chrohns can be hard to diagnose but also can be a debilitating condition as I knew someone with it many years ago. However to be honest with you I'm not sure you will get the answer you are looking for in this community as it is largely forged around peops with blood cancer although someone may have both or have a family member suffering from Chrohns. I do hope you get resolution for your son and he can get the right treatment so he can lead a full life hopefully free of this dreadful burden.

Love and best wishes JR

[ourlife]

Hi PrincessP.

What MPN does he have and what meds is he on ?

I have ET and have had bad diarrhoea, bloating,wind, etc symptoms for years, some times my food goes straight through me before I have finished my meal. For me it is worse when I am stressed worrying or over do things and am realy tired but it is a side effect of my meds ( AG & HU) I now manage this with anti diarrhoea pills ( loperamide) you can take quite a lot safely under medical guidance.

Ourlife

[Tinkerbell13]

Have a friend who has suffered from Crohns disease for many years so I looked up on her behalf 'natural news and Crohns disease' and found other ways to cope with it, including the very sensible taking of Vitamin D...feel so sympathetic, as such a worry when one's child is unwell. Best wishes to you and to him. Tinkerbell13

[catkinspolymer]

I can understand your frustration , Have you managed to get to a big teaching hospital say in London . My daughter went 3 years with severe back pain bowel and bladder problems which in the End turned out to be a non malignant spinal tumour which was successfully de-bulked. However Swindon Nottingham and Oxford hospitals all failed to diagnose and she was eventually diagnosed in ST Thomas's and operated on in Kings

In London. My advice is make a huge fuss and dont take no for an answer.

[Borage]

Have you heard about Nourishing Traditions. It is based on a wide range of natural foods, prepared in ways to make them more digestible, like putting porridge oats to soak overnight to cook in the morning. Old fashioned cooking, with its full fat content, seems to restore anti-inflammatory properties to the diet.

There is an extensive website for Dr Weston A Price and a book, Nourishing Traditions by Sally Fallon and Mary Enig.

[Mazcd Partner MPNVoice]

Hello PrincessPinky49, I am so sorry to hear that your son has this chronic bowel problem, it must be very worrying for you to see your son in discomfort and pain. However, I am afraid that you are on the wrong forum, we support people with myeloproliferative neoplasms, which are classed as blood cancers, you could have a look at this website crohns.org.uk/, they may be able to help you more than we can. Best wishes, Maz.