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Crohn's Disease Forum » Support Forum » I can't cope :(


11-22-2017, 06:18 AM   #1
chloe1517
 
Join Date: Nov 2017
Location: London, United Kingdom
I can't cope :(

I'm currently not diagnosed but have been referred to hospital as GPs think I have crohns or colitis and I agree. I'm 26 and have been having flare-ups since I was 22 but as they were only once or twice a year and sometimes coincided with food poisoning I either got put on antibiotiocs or I just stayed at home and waited for it to pass thinking *this wont happen again*. I had done really well until a couple of months ago - I was 11 months free of symptoms and thought maybe its finally gone (not knowing much about crohns at that point) but then came another flare-up. My flare-ups are usually severe - 3-5 weeks of illness - bloody diarrhoea 15-20+ times a day, vomiting, stomach pains, not being able to leave the house for weeks, being stuck in bed the whole time pretty much, all of my energy being gone to the extent I could barely walk and couldn't feed myself because lifting up a fork was too heavy for me. It was absolute hell.

I am now in another flare-up and this is the third week, although it's not as severe as other times it's still horrible enough - going toilet 15 times a day, stomach pains, vomiting, sometimes hurts to eat, and very tired. I had a blood test which showed my inflammation is nearly double what it should be so I'm due to go to hospital next week for a colonoscopy to see whats wrong with me but I dont know how to handle it in the meantime I'm crying everyday....I can't take it, I'm so tired and I'm so sick of not being able to go out and having to keep running to the toilet or feeling like puking all the time because my stomach feels so empty. I don't know how long it takes them to give you meds either I'm worried that me being ill will mean I'll have to wait even longer for a diagnosis too because even when I take the bowel prep wont my body just keep producing more diarrhoea anyway cause of my flare-up??

I don't know how anyone deals with this, and then to think this will go on forever :'(
11-22-2017, 07:02 AM   #2
ronroush7
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Welcome. I am sorry for all you are going through. Yes,the prep gives you even more diarrhea. I hope that it will be pretty soon after the colonoscopy that you will have a diagnosis and they will be able to get you on the right medicine. Sending support.
11-22-2017, 10:39 AM   #3
Jabee
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Well that sounds awful. Does your GP know how sick you are? He could prescribe something for nausea and maybe something for the pain. It also sounds like you must be losing weight as well. Have you tried a clear liquid diet? Bone broth, regular chicken, beef, or vegetable broth? You could also try a full liquid diet which allows more food. Itís much easier on the system. Iím sorry you have to wait until next week for the colonoscopy. You might also consider going to A&E since it sounds like youíre having trouble just staying hydrated. It can be hard to keep even liquids down when youíre dehydrated. I hope you get some relief soon.
11-23-2017, 07:35 AM   #4
woops!
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Sometimes the never ending cycle that this disease causes can really mentally get to me. There were times this past year when I really did feel there was no end in sight. My family was a great support and my husband was the best. Sometimes I just needed to vent and cry, I know it didn't help my gut, but it helped me to just get it off my chest. Try to keep the positives in your thoughts, and yes I know this is not easy. Remember you have a large group of people here, on this page, who know how you are feeling and hope that you get everything worked out. I agree with letting your primary doc know that the nausesa and pain are bad. Even if they give you something just for the nausea it may mean you could get some food into you. I also agree with the liquid diet. For me it was hard boiled eggs that helped. Small, easy to eat and full of nutrients. I would eat sometimes 6-8 a day. Have they tested your stool for c-diff also? Please let us know how your colonoscopy goes? Just work on trying to get through today. Work on tomorrow when it gets here.
Whoops!
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11-25-2017, 09:11 AM   #5
chloe1517
 
Join Date: Nov 2017
Location: London, United Kingdom
Thanks for the replies guys

no, my GP doesn't know currently, I will let them know next time I see them. I'm not eating much at the moment as after a while I feel sick from eating and there aren't many foods that make me feel ok to eat in the first place. At the moment I'm managing on cornflakes, a few plain biscuits, ice-cream and small amounts of dinner. Thought I could manage toast yesterday but no.

the IBD nurse rang back and got word from the doctor that I don't have to take the bowel prep as I'm already throwing up and going to the toilet so much. They said I can come in on monday anyway and have a shorter camera test done instead. I'm not sure if they mean a shorter colonoscopy or a sigmoidoscopy though? I'm worried how I will last not going to the toilet on the way to hospital. Now I'm also thinking surely no matter how long a camera test is they would still need my bowel to be emptied to some extent? I was reading about enemas.....do you reckon they will do that once I'm in hospital? Now I'm scared about that too.....I've never had any of this stuff done before
11-25-2017, 11:57 AM   #6
Jabee
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Good questions about the bowel prep and sigmoidoscopy vs colonoscopy. I would switch to a clear liquid diet at least a couple of days before the procedure. I think it would be better if they did a full colonoscopy rather than a sigmoidoscopy, just so they can see into the terminal ileum. But your symptoms may be making them think whatever is going on is in your colon or rectum and if thatís the case a sigmoidoscopy would tell them enough for now. Since you are probably already dehydrated I think itís a good idea not to do the prep. Hope you get some answers from it. Let us know how it goes.
11-28-2017, 11:43 AM   #7
Bufford
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I would try going on a more liquid diet for the time being. Apple juice, perhaps cranberry juice too. Look for the low acid juice. You may want to try an energy shake too. Keep well hydrated, its easy to become dehydrated when one is running constantly for the toilet.
11-30-2017, 04:48 PM   #8
RickS
 
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Many family Dr's know little about CD. You should be refereed to a GI for an experts advise. Obv a scope is on order, but it may be of no use for detecting small bowel CD. When I was in your position I asked to be refered to a GI who ordered an upper GI series xray, they xrayed everything from my mouth to my ass. Only the barium xray was able to detect CD, restrictions/narrowing in the small bowel, a scope will not do that since it can only go as far as the terminal ileum.
I agree with a elemental diet to help cope. I call it my mush baby food diet, stock up with Devon Custard, puddings, soups, power drinks etc who cares about junk food when you need nutrition and calories when you are sick.

Good luck
Rick
12-03-2017, 12:54 PM   #9
chloe1517
 
Join Date: Nov 2017
Location: London, United Kingdom
I had a sigmoidoscopy and got diagnosed with colitis. Horrible .....the nurses were nice but what a horrible feeling. Took gas and air and nearly knocked myself out, didn't realize you should go easy on it. I have meds now but haven't been able to swallow them one pill is huge. Had lots of water, tried it with ice cream, dissolved what I could...foul tasting I gagged & puked. I don't know how I can take them!

Still feel very bad although going toilet less now, hoping its nearly over
12-03-2017, 01:03 PM   #10
ronroush7
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I had a sigmoidoscopy and got diagnosed with colitis. Horrible .....the nurses were nice but what a horrible feeling. Took gas and air and nearly knocked myself out, didn't realize you should go easy on it. I have meds now but haven't been able to swallow them one pill is huge. Had lots of water, tried it with ice cream, dissolved what I could...foul tasting I gagged & puked. I don't know how I can take them!

Still feel very bad although going toilet less now, hoping its nearly over
Wishing you the best.

12-03-2017, 06:28 PM   #11
MizzSarah
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I would definitely let your GP know. It's important they have the records of what your experiencing and get on top of them to get you seen immediately. Keep on pounding on those doors.

I wish I could say something profound that works for me when Im having roughs days but I still haven't found that one thing. I just remind myself that today is a terrible day and tomorrow I hope would be better. That's all you can do when for alot of us, our condition fluctuates. We could do really well for a great couple of months and then something changes.


What I notice works well for me when im having rough days is sticking to a broth diet. I love love apple juice and apple sauce!!! I also like watching netflix show and the occasional playlist for spa music on tv.

Be kind to yourself.
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