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Your symptoms, typical and unusual.

Hello I’m 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 isn’t 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 I’m still feeling some discomfort.

I’m so tired but I think it’s 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?


It’s easy to read online but it’s quite hard to actually connect with others.


Thanks for reading and I hope you’re having one of your good days ❤
 
Location
New York,
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.
 
Location
New York,
I feel a bit of inflammation. I can tell because I’m feeling lethargic and my appetite is not was it was just a few weeks ago. It might be the beginning of a flare but I’m trying to eat plain, boring foods and not stray from my daily routines to try and prevent it from getting worse.

Overall though, I’m not doing too bad.

I know it’s 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.
 
This is all new to me so I really don’t know what is a symptom or not.

I just feel that my appetite has completely changed. I’m 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 I’m doing ok, mentally. Which is so important
 
Location
New York,
That’s what makes it so hard to diagnose, everybody’s symptoms are very different and there’s no specific symptoms to look for.

I also have the stomach pains after I eat though, as well as no appetite.
 
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.
 
Poor baby!

Aw I really hope she’s ok today! It’s so heartbreaking watching and not being able to fix it.

I hope you’re ok too ❤
 
Location
New York,
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 didn’t 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.
 
Last night I went to the bathroom and it wasn’t fully diarrhea, it was just soft but it’s been like this for weeks now. Anyway.. quite a lot of blood when I wiped and also in the toilet.

I’ve been ok today though. I’m 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 don’t 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 I’m mentally handling it I can take on anything. But I do have days when my confidence is so lacking and I don’t want to leave the house. Obviously I know this doesn’t 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 ‘worth it’ when I’m having a bad day.
 

Trysha

Moderator
Staff member
Hello.Daisy
All bleeding should be immediately reported to your doctors it’s 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....that’s what mine does..
Sorry to hear you are having a bad time
Feel better soon
Hugs
Trysha
 

Trysha

Moderator
Staff member
Remember the Nike slogan....”Just Do It”
Your doctor will be glad you called...after all a stitch in time......etc
 
Need to get blood tests and stuff but the closest appointment they have is Monday. Annoying.

When my tummy isn’t cramping it kinda feels like I’ve been coughing for days and my muscles are sore? I’ll take that over the cramps anyday!

My appetite is so awful right now but I’m managing at least half of one full meal a day. There’s donuts in the kitchen.. I just want to force it into me because before all of this I was the queen of junk
 

Trysha

Moderator
Staff member
Glad to hear you went to the doctor.
What kind of lab makes you wait for bloodwork and why can’t 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
don’t think it’s important.
Keep in touch and let us know how things go for you
Hugs
Trysha
 
I know! The U.K. can be so slow.. again that’s people over using the system for every little sniffle they have. Urgh.

Anyway.. I hope you’re doing ok and the bloodwork comes back good!
❤
 
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