Crohn's disease?

[wiserlady]

Hi. I have been suffering from stomach ulcers and took medication, ppis, to clear them up. I was gradually coming off of this medication once I knew the ulcers were all healed, but noticed I would get stomach aches and that pains lower right side would return now and then when the medicine had stopped that. I had had my gallbladder checked and it wasnt that. I am now finding that I am intolerant to lactose. I understand that lactose intolerance can be collected to crohns. I am a 62 year old female. Obviously I must discuss this with the doctor, but in the meantime....... hello...

[willow24 Administrator]

Lactose intolerance is not a symptom of crohns. Some people with crohns find they are better on a lactose free diet, as others find dairy free or gluten free helps them. Usual symptoms of crohns is diarrhoea with frequency and urgency, passing blood and/or mucus, pain, weight loss and fatigue.

Has your gp carried out blood tests to check inflammatory markers? Also request a faecal calprotectin test as this shows inflammation specific to the bowel. From here gp can determine whether it is required for you to be referred to a gastroenterologist.

[wiserlady in reply to willow24]

Thank you for the reply. I live in the UK so cannot give the gp a list of things I request, they decide all of this. I am on the national health service. I need to wait weeks just to speak to them on the phone for five minutes. My main symptoms are sometimes having a sharp pain right side abdomen, acid reflux which is making throat closed/raspy/worn - mucus in throat - breathlessness, fatigue. It has been here for a few years now, over and over I have had to be rushed into hospital urgently told it is asthma yet it is not asthma and asthma care does nothing. Yes sometimes inhalers help with it a little. I now find I cannot tolerate lactose, it gives me a bad pain stomach. BEFORE that I had a time when I had problems with eating chocolate and that passed and before that cream and that passed and sometimes coffee.

I understand this can be ibd. My mother had crohns disease and I understand it can run in family.

[willow24 Administrator in reply to wiserlady]

Im in UK too, and an nhs nurse. You are well within your rights to request these tests. Your symptoms present more like gastric oesophygeal reflux disease (GORD) and lactose intolerance rather than IBD. Also dairy can cause thickening and excess secretions of mucus, esp in asthmatics (hence likely asthma diagnosis). I am a crohnie myself and have worked in gastro x

[wiserlady in reply to willow24]

It is rare that I eat dairy but I could eat it up until about a year ago without any problem at all. At the moment I have to wait to speak to my local gp about this.

You cannot demand things with them. I asked for tests for lactose and they refused me. And if it was just lactose intolerance would that explain the not being able to drink coffee sometimes, or the sharp pain in my side sometimes. The thick mucus in my throat is the same all of the time, not just when I have dairy or cheese. It gets so bad I cannot breath and have to have oxygene and nebulisers. Often when bending or sitting. And the asthma diagnosis was simply because of the breathlessness and the coughing, the last consultant I saw said he can see it is not asthma but unfortunately some silly person wrote that on my file so now the others assume it. Because I know my mum had Crohns I think it might be that. Am sorry to hear that you have Crohns but at least you are in the right job to understand and help yourself.

[willow24 Administrator in reply to wiserlady]

You have health rights under the patiend charter. Blood tests are routine in a thorough health assessment.

If your gp refuses then they are not acting within your best interests and need reporting.

I dont get special treatment as I work in the nhs, I was just lucky to see a very good gp 30 yrs ago. It nay be worth changing gp practice or of you can afford it have a 1 off private appointment with a gastroenterologist who also does nhs. If you need to be seen again they can transfer you to nhs list.

Have you been checked for COPD?

[wiserlady in reply to willow24]

Thank you for your time and information. I didnt realise that if you need to be seen again when you go private they can refer you to NHS. But I dont want to go private, and cannot afford it. And it is too complicated and difficult to change doctors, with no guarantee it will help anyway. Ive been with mine many years and one of the doctors there knows me well. It is just that I struggle to get out, housebound most of the time, so the consultations are in the phone. You said you believe it to be just GORD anyway so its hardly worth all of that bother then. Yes they have said about COPD but I dont see how that would cover the lactose intolerance or the pains in my side or how it comes and goes. And I have no reason to have COPD, never smoked etc.

[willow24 Administrator in reply to wiserlady]

I understand its expensive yo go private. Getting correct diagnosis and treatment is important, we all deserve the best care.

Copd isnt just a smokers disease, although thats the major cause of it. Second hand smoke and exposure to other smokes/fumes etc in jobs can cause COPD.

Intolerances can just appear out of the blue, another one of lifes mysteries.

Dont give up, maybe tell gp how concerned you are because worrying itself will make you unwell. Pains may be ibs and worrying will definately make it worse.

Keep in touch and let me know how your doing. Hopefully others on forum will offer support and advice too xx

[wiserlady in reply to willow24]

I know COPD is not just a smokers disease but I live alone and nobody who smokes visits me. I am never and have never been in a smoke environment. I would have thought of copd then years ago. But that would not account for the pain in my side,

or the throat. Nor how it comes and goes. AND I dont believe it is normal to reach the age of 62 and then suddenly have problems with coffee and cheese when you did not before. Think there is a reason for everything. Last year I was in hospital with the breathing problem again needing treatment, and I told them that I have stomach ulcers, that need to be checked out, they would not listen, I had to nag and nag.

My stomach was in such agony all of the time. They organised an ultra sound.

I told them this was pointless as an ultra sound cannot see inside the stomach, they would not listen. Then they told me the ultra sound had shown I was clear and no ulcers. I reminded them that an ultra sound cannot tell them this. So they arranged for the camera down throat and there were four big ulcers.

[willow24 Administrator in reply to wiserlady]

Have you been checked for H.pylorie ? Also are yojnon regular pain medication or anti inflammatory meds ?

[wiserlady in reply to willow24]

Not sure of the connection. My symptoms do not fit h pylorie. Not on any medication whatsoever so nothing to do with that, would have thought of it, and it would be an amazing coincidence that it happens when the stomach ulcers clear up and I am taking ppis -which ive now stopped taking totally.