Crohn's Disease Forum » Support Forum » Undiagnosed Club » Your symptoms, typical and unusual.


11-27-2018, 08:56 AM   #1
Cdaisydo
 
Join Date: Oct 2018
Your symptoms, typical and unusual.

Hello Iím new here and undiagnosed.

I do however have a fistula and maybe another. I had surgery to partially lay one open and still have another lump which isnít draining.


ANYWAY.. the last few mornings I have been waking up with quite painful lower tummy cramps, painful enough to break me out in a sweat. This is eased by going to the bathroom. However Iím still feeling some discomfort.

Iím so tired but I think itís just due to the painkillers from the op.

My appetite has been rubbish.


I just want to know what the typical signs and symptoms are?


Itís easy to read online but itís quite hard to actually connect with others.


Thanks for reading and I hope youíre having one of your good days ❤️
12-01-2018, 04:03 PM   #2
Tony_G
 
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I was diagnosed with Crohn's at 10. I also had the bad stomach cramps. I had the constant urge to use the bathroom, got sick often, was often nauseous and threw up a lot. I also had a touch of arthritis.

My symptoms changed a bit. I learned to control my stress so I don't really have the bathroom issue anymore. I've also identified most of my trigger foods and have mostly eliminated them from my diet. When I do flare up now, as I typically do in the winter, it's mostly throwing up and no appetite at all. I get severe weight loss during flare ups. But for the most part now, I feel more in control of my crohns then I ever had.
12-03-2018, 07:49 PM   #3
Cdaisydo
 
Join Date: Oct 2018
Oh wow thatís so young! Poor you.

How are you today?

Itís just such a long process
12-03-2018, 09:32 PM   #4
Tony_G
 
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I feel a bit of inflammation. I can tell because Iím feeling lethargic and my appetite is not was it was just a few weeks ago. It might be the beginning of a flare but Iím trying to eat plain, boring foods and not stray from my daily routines to try and prevent it from getting worse.

Overall though, Iím not doing too bad.

I know itís a long process, most of my doctors dismissed my crohns symptoms as stress. My parents tried to find out what was wrong from years before I was 10.

Hopefully your cramps lessened or stopped.
12-04-2018, 08:55 AM   #5
Cdaisydo
 
Join Date: Oct 2018
This is all new to me so I really donít know what is a symptom or not.

I just feel that my appetite has completely changed. Iím not hungry but my tummy makes some crazy noises.

When I do eat I feel I get stomach pains after.

Despite taking codeine for pain relief after fistula surgery I still have loose stools.

But I think Iím doing ok, mentally. Which is so important
12-04-2018, 10:53 AM   #6
Tony_G
 
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Thatís what makes it so hard to diagnose, everybodyís symptoms are very different and thereís no specific symptoms to look for.

I also have the stomach pains after I eat though, as well as no appetite.
12-04-2018, 01:11 PM   #7
Cdaisydo
 
Join Date: Oct 2018
Sucks!

I hope youíre doing ok though!

I have an mri on Thursday and will find out the results two weeks later
12-04-2018, 10:17 PM   #8
Tony_G
 
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I am doing ok, at least overall.

I had a few mriís and a gi series before a colonoscopy finally revealed the crohns.
12-04-2018, 10:18 PM   #9
Tony_G
 
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Keep us updated on itís the results in the forum!
12-05-2018, 09:04 AM   #10
Cdaisydo
 
Join Date: Oct 2018
I will.. thanks Tony☺️
12-07-2018, 10:56 AM   #11
sid87crosby
 
Join Date: Dec 2018
One of the most annoying are the canker sores, one finally goes away and another shows up when I am flaring
12-08-2018, 04:02 AM   #12
OrlaRi
 
Join Date: Aug 2018
Location: Mullingar, Ireland
My 7 year old has v scary night sweats when in flare. Her sheets would be soaked & I can see a visible ring of moisture all around her body on the sheets. I can tell if inflammation is bad, as night sweats get progressively more severe. She then wakes up dehydrated & cranky next morning. She also has stomach cramps, no appetite & constant diarrhea when in flare.
12-08-2018, 06:31 AM   #13
Cdaisydo
 
Join Date: Oct 2018
Poor baby!

Aw I really hope sheís ok today! Itís so heartbreaking watching and not being able to fix it.

I hope youíre ok too ❤️
12-09-2018, 11:27 AM   #14
Tony_G
 
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My 7 year old has v scary night sweats when in flare. Her sheets would be soaked & I can see a visible ring of moisture all around her body on the sheets. I can tell if inflammation is bad, as night sweats get progressively more severe. She then wakes up dehydrated & cranky next morning. She also has stomach cramps, no appetite & constant diarrhea when in flare.
I just started having the night sweat symptom when I flare 2 years ago, I didnít always have it. There was soooo much sweat the first time that I thought I peed myself. Also, in NYC, lots of people have a bedbug cover over the mattress, just as a precaution. That case is also waterproof, so I woke up in a small pool of sweat.

I also had the constant diarrhea and stomach cramps when I was that age also. The only symptom that really went away for me was the diarrhea. I learned to manage stress, which helped a lot. But now when I flare, throwing up seems to have replaced the diarrhea.
12-09-2018, 12:44 PM   #15
Cdaisydo
 
Join Date: Oct 2018
Last night I went to the bathroom and it wasnít fully diarrhea, it was just soft but itís been like this for weeks now. Anyway.. quite a lot of blood when I wiped and also in the toilet.

Iíve been ok today though. Iím so bad at going to the dr and I will try to do anything I can to avoid it.. like it was only the one time. I Just hate making a fuss. I find it very hard to be open and I have a difficult time being examined, the drs donít really know this as I try my hardest to hide it.

Anyway.. is this worth talking to my dr about? I have an appointment with a crs on Christmas Eve so should I just wait til then?

I had my mri and Thursday, the used a contrast too.

I think when Iím mentally handling it I can take on anything. But I do have days when my confidence is so lacking and I donít want to leave the house. Obviously I know this doesnít define me and I can totally handle it with the support of my absolutely amazing family.

On a personal level I find it hard feel attractive or Ďworth ití when Iím having a bad day.
12-09-2018, 10:10 PM   #16
Trysha
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Hello.Daisy
All bleeding should be immediately reported to your doctors itís very important so they can get a head start on the problem.
Give your doctor a call and let them know about it...the doc can then decide whether it can wait till your next appointment.
You likely should have some bloodwork done also....to check hemoglobin and whitecell count for a start....thatís what mine does..
Sorry to hear you are having a bad time
Feel better soon
Hugs
Trysha
12-10-2018, 08:32 AM   #17
Cdaisydo
 
Join Date: Oct 2018
Thanks Trysha! Iím just trying to find the courage to phone 😬
12-10-2018, 10:25 PM   #18
Trysha
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Remember the Nike slogan....ĒJust Do ItĒ
Your doctor will be glad you called...after all a stitch in time......etc
12-11-2018, 06:26 AM   #19
Cdaisydo
 
Join Date: Oct 2018
Ah youíre right!


Have an appointment this afternoon☺️
12-11-2018, 05:20 PM   #20
Cdaisydo
 
Join Date: Oct 2018
Need to get blood tests and stuff but the closest appointment they have is Monday. Annoying.

When my tummy isnít cramping it kinda feels like Iíve been coughing for days and my muscles are sore? Iíll take that over the cramps anyday!

My appetite is so awful right now but Iím managing at least half of one full meal a day. Thereís donuts in the kitchen.. I just want to force it into me because before all of this I was the queen of junk
12-11-2018, 07:48 PM   #21
Trysha
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Glad to hear you went to the doctor.
What kind of lab makes you wait for bloodwork and why canít they do it the same day as ordered,I am quite shocked
I saw my doc today,liver enzymes slightly up...repeats ordered....plus other bloodwork..this started last August
donít think itís important.
Keep in touch and let us know how things go for you
Hugs
Trysha
12-12-2018, 10:51 AM   #22
Cdaisydo
 
Join Date: Oct 2018
I know! The U.K. can be so slow.. again thatís people over using the system for every little sniffle they have. Urgh.

Anyway.. I hope youíre doing ok and the bloodwork comes back good!
❤️
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