Feeling down

[Jackie1947]

I've posted before about my shock diagnosis some 11 months ago. Since then I've been told I have unspecified colitis. Another story. Then throw long term rheumatoid arthritis into the mix. Consultant dealing with the colitis or like here's a prescription see how you go. Well I didn't. Waiting to go back. Back to Pancreatitis I get no medication or support. Probably as I don't tolerate the enzymes as I'm intolerant to pork products. I feel jealous ( sorry) most of you are getting treatment. There are no recognisable alternatives to PERT. Stuff you buy over the counter has no data proof . Dietary Nurse not interested as I'm not taking enzymes. Consultant said I will see you in 2 years but I challenged this decision and he bought it down to one. Sorry I do have treatment from my GP of max immoduim each day to control pancreatitis and colitis. Very frustrating.

[AnnieJ123]

Dear Jackie, I am so very sorry you are not being supported as you deserve. I do hope you get the help you need soon.I have RA and have had ongoing bowel problems too, particularly since 2015 and never felt investigations re my bowel were/ are adequate.Reading your comments, I see similarities between us and sometimes I think I have problems with my pancreas too. I am pushing for further tests. 2 ordinary ultrasounds showed gall stones, but pancreas seemed ok, despite questionable symptoms. I think sometimes the only answer is to go private and ask for a private consultantation or visit A&E. I read that most GPs do not come across cp problems very often.It is so frustrating for you . The shock of having cp is huge, and you need medical support. I wish you all the best. A big hug from me.

[Jackie1947 in reply to AnnieJ123]

Life eh! No pork products definitely an allergy with reaction of restricted throat and swollen neck glands. I self monitor but my GP is one of the best and I'm grateful for that .My gall bladder was removed 54 years ago! Family trait. We also have a history of bowel problems. My Son became seriously ill and had life saving surgery. Strangely enough I can eat chocolate so not all bad 😀

[AnnieJ123]

I am adding an extra point to my previous reply as I am concerned about you. Are you sensitive to pork or do you have a serious pork allergy?It is just a thought. Can you get desensitised over it by an allergy specialist?It is such a shame medications have products in them that might cause sensitivity or might not be allowed for say , religious reasons. Some medication have sugars, or sugar substitutes such as aspartame, or added sodium that many cannot tolerate. I hate aspatame. Sadly ,it is in so many medicines. Take care.

[madonbrew Pioneer]

Do you have lots of pain too? I'm wondering if so, if you can be referred to the pain clinic? At least that would be a little part helped??

[madonbrew Pioneer in reply to madonbrew]

Unfortunately sometimes here , I have learnt that we have to advocate for ourselves quite a bit to get what we need. That can be pretty difficult and tiring when you feel poorly, but on the days you feel up to it, keep pushing...ring the GP again etc. Also, don't forget that you can ask to see a different consultant...I've recently done that with my asthma (I've severe asthma and ended up in icu on boxing day) . The consultant I'd had kept discharging me from clinic despite me being on 7 regular meds, some unlicensed doses, for 4 years and my gp kept referring me back. I eventually asked to see a different consultant, and this one's done more in 4 months than the other one in 4 years.