Feeling lost

[GemmaLee]

hi everyone. My story began 8 years ago. I was 27 and weighing a healthy 10 1/2 stone. I then had IVF, this was successful and i was pregnant with twins. Early on in my pregnancy i started being very sick, stomach pains and diarrhea. I was kept in hospital for most of the pregnancy being told it was morning sickness because i was carrying twins. I had the twins and then the trouble really started. I had lost 1 1/2 stone during pregnancy and now was extremely weak and had twins to look after! I kept going back to the gp with nausea, abdominal pain and diarrhea. i was constantly being told i was just tired and run down. then gp thought i had fibromyalgia. After another year of struggling by on massive amounts of paracetamol and immodium i went back to the gp and insisted on something being done. During this time i had returned to work full time (in theory!) The gp sympathetically tipped her head to one side and suggested maybe i need help from the mental health team!!! OMG i was in shock.... dont get me wrong i was depressed but because i had now been suffering for more than 2 years with extreme pain and diarrhea and weight loss. i was down to 7 stone. I went home shell shocked and began to question myself, if the doctor thought it was in my head maybe it was. Ihad an appointment come with a gastro consultant who listened to my story and sent me for an ultrasound of my abdomen. This showed nothing and the next time i saw he he suggested that i saw there dietitian as he thought it may be a psychological issue!! Again i took the advice - i ask myself why now - and saw the dietitian for about 9 months. Didn't gain any weight because i was still going to the toilet 10 - 15 times a day. Stopped going to dietitian. Tried to manage at home again for fear that everyone thinking its in my head. Even my own husband how seen me going to the toilet so many times thought i had some sort of eating disorder. Now down to 6 stone and feeling very very ill and i began passing out at home. I then was admitted and seen by another gastro consultant who immediately did a endoscopy and colonoscopy. these showed i has the dreaded Crohns disease. It has progressed through my large and small bowel. My duodenum and ileum are full of ulcers and i have a hernia. First they put me on 40mg of steroid a day this initially helped but as soon as i tapered off all the symptoms returned. I was then put on another drug with i can not remember the name of but that didn't work, then they tried me on pentasa which caused me to have pancreatitis. then they tried me on humira every week which worked well for a few months but then all symptoms returned. Then i was put on infliximab every 6 weeks which has been a complete failure. im now still weighting 6 stone , im 5 foot 7 in height and weak cant eat much and when i do have to go toilet about 15 - 20 to empty then the stomach pains start. spoke to bowel specialist nurse and was scheduled appt for yesterday only to turn up and the consultant had taken the day of and i should have been informed... JOKE we are people in pain they should not be able to do this to people.. Just really looking if people have had similar experience - Has anyone an opinion on anti-MAP therapy? thanks for reading i know its a long post just feeling so lost and alone.x

 

[jacques.debouaille]

What is the anti-MAP therapy ?
I developped my own food list and my own regimen. I think it's very personal and depends on different factors that should be tested for each individual. When you see the side-effects of the drugs the doctors give us, it's scary. And when doctors say that we can eat whatever we want, it's just because it's too complicated to test every patient with tolerated or untolerated foods.

 

[kellehbeans]

Hello Gemma,

Please don't feel alone! You've done a good thing by coming to these forums because there are a lot of people in a similar situation to you and will be able to help you out, and most certainly make you feel like you are not alone!

Sending you big hugs. xx