Please dont ignore your diagnosis!

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Joined
Jan 29, 2014
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I wanted to write this to warn others of the dangers of ignoring your diagnosis.. like I did :( After being diagnosed a few months ago I took the medication I was given and pretty much ignored anything else.. the warning signs were there, I had bad stomach aches, bloating, more often than not I felt sick, but still I changed nothing about my life, what I ate, anything.. i just muddled on and never really mentioned it,, as I tapered off the prednisolone I did notice my symtoms getting worse again, but again thought never mind i'll be fine.. the days when I felt really bad i'd lay on the couch full of paracetamol, buscopan & codeine thinking i'd feel better in a day or so, I think the fact I didnt constantly suffer from diarrhoea or bleeding as a lot of people do made me ignore it even more, more often than not I suffer from constipation so didnt think much of it, I kept thinking compared to some i'm fine, i got off lightly.. until the other week.. the pain in my stomach was getting more and more intense, but still I carried on, ate my tea (i love food) stayed up watch tv etc, as the night wore on it got worse and worse, I didnt really get any sleep, the next day it was just as bad, i did think about going to a&e but thought I'd see how I was, by late afternoon I was in absolute agony and had started vomiting lots of brown/red fluid,(thought it was the vimto/coke i'd drank the night before) when my husband got home from work I told him I think I need to go to a&e, I was in so much pain when we got there I couldnt even sit on a chair, I was on all fours on the floor, they took me to see triage nusre really quickly, I started throwing up again only this time is was really horrible and nasty and it soon became clear I was throwing up my own poo :( omg! that has got to be one of the worst experiences of my life! I was given morphine and various other stuff, tbh they couldve done anything to me at this point I just felt so ill, the early diagnosis was i'd perforated my bowel, as it turned out after varoius xrays, and scans it was a blockage, I was transfered to the main hospital and ended up with a NG tube to drain my stomach..the tube itself was bad enough..but... oh... vile... to see the nastiness that was in my stomach going into that bag was awful.. but on the plus side, pretty much as soon as it started draining the sickness and bad pain went away..they settled me for the night, I had IV lines in both arms being fed fluids, steriods, antibiotics & painkillers...in the morning I was sent for a ct scan, the drs had told me if the blockage was due to inflammation the drugs should work and I'd avoid surgery, but if it was due to scarring then no drug would make it better, as it turned out it was a bit of both, there was lots of inflammation and also quite a bit of scarring, as it seems to have opened (I have beeen to loo etc) the surgeon said he was happy that he didnt have to operate at this time..but couldnt rule it out in the future... then I saw another dr who said he would have done the operation.. so I'm not sure whats good and whats not :/ anyway a week later and I'm now home, feeling loads better but a little scared about what i am eating seeing as they have told me I now have this stricture.. I am now back on 40mg of prednisolone, tapering by 5mg a week and 3 sachets of pentasa a day, I'm being sent an appointment with the GI nurse to talk about going on humira.. I asked what pain killers would be best and was told just to take paracetamol if i needed it, codeine/tramadol etc would prob make me constipated, (and i dont need any help with that) the gastro dr I saw pretty much told me to go to a&e if the pain was bad and they'd give me the drugs Intravenously... I'm now so worried of getting blocked again i am panicking if I dont go to the loo, even though before this I could go a good couple of days and that was normal.. so they gave me some lactulose which i have taken once up to now.. never thought I'd be so relieved to go to the toilet lol.. I saw a dietician while I was there, she gave me a leaflet on dietry advice, managing stictures in crohns disease, its mad, everything a healthy diet normally tells you to avoid, white bread, white pasta etc is fine and all the nornal healthy stuff is a no no.. as I aslo have gastitis and a hiatus hernia, the food to avoid another blockage is causing reflux... but i'd most certainly sooner have the reflux than the blockage!!! If you got this far, thanks for taking the time to read, I would hate for anyone else to have to go through this just because they didnt/couldnt/wouldnt accept the diagnosis they had been given xx
 
Welcome!
A good warning indeed, I ignored my symptoms for a month before I even considered making an appt, putting it down to hemroids. Finally I saw a doc and I am so glad I did because I could have easily ended up on the same path as you. My doc actually wanted to start with remicade first given my symptoms and disease progression by the time I came in but thus far haven't, probably because i saw my doc before it got too bad.
 
Hello Dica
Thank you for posting your thoughts and experiences.
It is very helpful to recently diagnosed people to read of the experiences of others.
It has always been hard for me to accept the crohn's title and at first I resisted advice and medication.Of course things got worse and finally I had to have Remicade which was stopped after the first three months due to some symptoms.
Too often we think we can ignore the signals but it will get us in the long (or short) term.
Feel better soon
Hugs and best wishes
Trysha
 

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