Losing the will :(

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Daisypie

Joined
Mar 3, 2016
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I'm wondering if you guys can help and just offer your opinions. I'm still undiagnosed but I suspect Crohn's as does my doctor but I've been passed back and forth that much I'd rather ask the opinion of true sufferers. I know it's not the same for everyone but I'm sure you can let me know if it sounds like yours etc.

Sorry to be icky!

I basically though I had a very bad case of gastroenteritis and when this lasted for about 11 days I thought hmm doesn't feel right. I went to the doctor who did blood tests and stool tests. Blood tests were fine apart from my platelets were quite high and one other thing was lower than normal but nothing to worry about. My calprotectin results were over 600 (Normal is under 50) this strongly indicated ibd. Brilliant I'm getting somewhere!

Got taken into hospital about three weeks later as I was dehydrated and all round feeling crap! They scheduled me in for a colonoscopy however the wait was two weeks. Had this done and there were no problems but if started to feel a lot better by this point. The doctor then said I needed an mri (wait time three months) in this time I have had a lung infection, cold, sore throat... My immune system decided to go on holiday.

Now as it stands I have up to about an hour after eating and I have to RUN to the toilet. It comes so sudden I have minutes. In this time the pain is horrendous. It kind of feels like period pain in my lower stomach and this is after eating anything. Nothing triggers it although when I say spice it can be pepper seasoning, the slightest spice makes me go within 15-20 mins. I've had numerous accidents and so much time off work. I feel a lot better in myself as when it first happened I was so tired I felt like I'd run a marathon every day.

Nothing has been solid in about two months? Can be mucus-y but it is just all like liquid. Before the colonoscopy there was blood but that ruled out colitis.

Please can anyone offer an opinion. Does this sound like ibd? Like anything you guys have? Or is the what one doctor ruled as ibs :(
 
It does have some very classic symptoms of IBD (Crohn's' UC). I understand your struggle. I had problems starting in 9th grade. Missed countless days of school all throughout high school. Never could get a confirmed diagnoses until I started college. Finally got a diagnoses confirmed and put on meds and found a combo that works. It takes time to be diagnosed and put on a regime of meds that works for you. I hope the best for you and know that there will be good things to come!

Best of luck!
 
could be a lot of things. I hope you find some answers.. Sometimes it takes awhile and a bit of advocating for yourself to get answers.
 
Hi welcome. As others have said it can be a long wait for diagnosis. Mine was a few years.. it was a scan that diagnosed mine. So hang in there . Hope you get a dx soon and start to feel better. It does sound ibd type symptoms but so many things have similar symptoms. Which is why it can take a while to find out. Best wishes and please keep us updated on how your doing .
💕💕
 
Hi Daisypie and welcome to the forum.Sorry you are dealing with all the stress of being undiagnosed.You are right how IBD affects everyone differently.Stress is a big factor with IBD as well as IBS.Have you checked out the support group for those who are undiagnosed? http://www.crohnsforum.com/showthread.php?t=13113 Perhaps you have been there already,if not,it is worth a visit.Keep us posted.
 
Daisypie, keep meeting with your GP and push for seeing a consultant. As JaimeM says a bit of self-advocating never did any harm. As the saying goes 'Loudest baby gets fed first'!

Not knowing what's up is stressful on its own. Once you're diagnosed at least you've got something to focus on.

Lots of useful stuff around here and plenty of people who can give you good advice.

Nil desperandum.
 
A colonoscopy should reveal Crohns. They typically take dozens of biopsies. If there is no blockage (meaning you have Crohns if your obstructed), they can look all the way through the colon.
That's how I was diagnosed after a year of suffering. I think its good news your colonoscopy came back negative for crohns. I think it means you have something else, just my opinion (like irritable bowel syndrome hopefully, which goes away when stress goes away).
 
Ian_H

I have not heard the term Crohn's UC, a few years ago I was diagnosed with left sided Crohn's. Is that the same thing? And in all honesty, I think thats a bit active right now.
Pretty sure by the feel of things I have swelling in two areas of my colon. After eating with
in a short time i get a painful sensation as i am guessing digestion gets everything moving and when it passes those two areas it hurts. This is not the normal holy H#$$ cramping
with a CD episode.

Lauren
 
tots said:
Ian_H

I have not heard the term Crohn's UC, a few years ago I was diagnosed with left sided Crohn's. Is that the same thing? And in all honesty, I think thats a bit active right now.
Pretty sure by the feel of things I have swelling in two areas of my colon. After eating with
in a short time i get a painful sensation as i am guessing digestion gets everything moving and when it passes those two areas it hurts. This is not the normal holy H#$$ cramping
with a CD episode.

Lauren
Click to expand...

I have heard of Crohn's Colitis but not Crohn's UC
 
Ian

No problem just making sure I was understanding. I think either way there are ulcerations
so either term could be correct.

Lauren
 
My colonoscopy was fine but I feel like it isn't ibs. There's far too many accidents and too much pain for that. But I feel stupid when the scoters keep changing their diagnosis like it's all in my head! :( the thing is I'm applying for the police and because I'm undiagnosed they can't treat me which means I've had a lot of sick days! Just frustrating because it seems to come and go and sometimes it lasts a week other times months. But I can't remember in the last six months when I haven't been ill! I'm just recovering from a lung infection. It seems my body can't fend anything off atm :(

I feel like because I'm very in tune with my body ie don't drink or take drugs or eat fatty foods all the time I noticed when I was getting ill, whereas on other people my age it could be passed off as the after effects of too much partying. But it definitely isn't that :( so when I had my colonoscopy I feel like it hasn't had chance to damage my insides too much. There were a couple of red patches but nothing that jumped out at him.

I suppose at this moment in time any diagnosis is better than none. I'm scared to go out in case the urge comes on me because it's so horrendously embarrassing and the pain of not being able to go straight away takes my breath away! :(
 
You said your colonoscopy was fine but you feel like it isn't IBS. Keep pushing the doctor for answers. Sending support.
 
A couple of red patches! I have a relative that has a form of colitis she has diarrhea allot, and I have read is that the inflamed areas of your digestive system push or slough food away so that it can heal, thus diarrhea. Yeah, good luck getting me to go anywhere either. Now your life is a rollercoaster, mine too, but I've been struggling 6 years. Start working on stress (if you have it, seems we all do nowdays), and diet, get on an autoimmune protocol diet, Natasha McBride among others these days will tell you, grains are like sandpaper going through your gut. I stick to soft foods only, was finally able to get back into raw foods but they are soft raw foods. I'm not an expert on Crohns, but if it's really auto-immune once you flip that switch it's not always easy to unflip it so please take care of yourself monitor symptoms and avoid things that seem to be problematic for you.
 
Daisypie said:
Doctors not scoters haha *
Click to expand...

Have you tried Immodium or Loperamide ?
I have Loperamide on repeat prescription,but you can get it O.T.T.at Boots.
On bad days it enables me to leave the house after an hour or two.
Of course,being aware of your/our diet is important too.Lots of things I used to enjoy,I now avoid.It's just not worth it.
You need to be careful not to over-do loperamide though,because it can cause
constipation.But it's good to be able to go out without worrying.:eek:
 
Sweetie, it sounds counter intuitive but it helps. I tried it cos gastroenterologist suggested it but I thought it was too crazy to keep going. Years later I realised how it works. Pslliyium husks or sorry I hav forgotten name but u get it frm chemist. It is PH ground up w flavourings eg orange. It is used to provide fibre to stop constipation but because husks absorb water it is v helpful to thicken diarrhoea so that u don't rush to t loo so often. Mix it w water & drink. It also lines ur intestines so I think they feel a bit less raw. try a drink a day to start. Don't worry after a week of so if u pass a v long tube of wot looks like t lining of ur intestine. It is only t psyllium passing through. If u don't wash ur drink glass straight away u wil notice how it really sticks to t glass (& also ur intestine) Hope this helps
 

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