Yeah i see a consultant for my GP it was his idea to try the botox injections they have helped and im being sick less he said if the injections dont work then i can possibly try a gastric pacemaker.
Omeprazol seemed to make some of my symptoms worse so stopped that. I take eurithromycen constantly although like your lubiprostone its only supposed to be on a short term basis. It helps with a problem i get that i burp a lot and when i do it smells like what i would describe as sulphur its the most embarrassing side effect of the GP that i get. Do you ever have that? Is there anything you avoid specifically to stop it if you do?
I avoid eating anything acidic to try and stop the reflux i found peppers were the worst culprit for that. I cant believe you were given such bad advice by your dietician.
I do try and move as much as possible i get up and walk in the office and go to the gym i usually wander round the house for a while after dinner too but i might try eating standing like you. Some days the bloating is so bad its actually painful.
Im hoping to avoid needing to try the feeding tube for as long as i can so trying every other option possible first.
It sounds like you have had an awful time with it. How long have you had gastro issues?
I'm 5 years from the first initial diagnosis of slow colonic but the stomach and extra started far worse about two and half years ago now. I only ended up on prescibed opoid meds and diazepam etc because of biopsies for breast cancer that put my neck in to spasms..but coming off them didnt stop all the problems getting worse.
I agree with peppers.. I have to eat overcooked broccoli everyday for iron. Not the vitamins. Meat and especially any fat from it is hell. No fruit with skins. No salad possible as only can manage skinned cucumber or avocado small piece. I can eat stewed blueberries and yogurt. Icecream. Can eat soft veg like courgette, mushrooms, butternut squash (small amount) mashed parsnips, mashed potato.
Omelette. Homemade fish pie, homemade corned beef hash, altjough both seem to fluctuate with effects but I need nutrition.. no bread, cake, or cereal. I did experiment however with a really booxy sherry trifle with madelines over christmas and survived it!! Think the custard and alchohol helped!!
I was on smoothies for a long time but with more yogurt and water than things like coconut milk or other almond milk etc.
I can tolerate some nuts suprisingly but I do have to mainly chew, chew these. They go down but come out whole as I swallowed them if they arent really chewed.
I still rarely eat more than a teaplate of mushy food a day but have started to be able to try some more providing I stand and walk more than sitting, and go on vibration plate.
Gift, gastro intestinal failure trust on FB has some phenomemal people on it, some starting their journey with it and some that have progessed through to pacemakers, jpegs etc... some diabetics. They really are the warriors fighting for health and better understanding and treatment of this vile illness.
There is stomach ache or diarrhea that many will complain of. But boy, this disease people just do not know how bad it is and how ill equipped the medical people are all over the world to help patients. It is one of the toughest diseases ever... I dont think anybody really realises just how bad it is unless they suffer from problems so significant.