Can Crohn's drastically change symptoms

[crohndee]

I've had Crohn's for 11 years, since i was 15.
You would think i know my body's response to crohn's by now but lately my crohn's has been so up and down.. it seems like my symptoms drastically change from day to day.. i can't help but wonder, is this 'normal'.

yesterday, for example, i was having shocking pains.. went to have a bath to try and relax.. and ended up in tears from the pain and had to literally crawl out of the bath holding my stomach.. no dose of painkillers helped with the pain. was vomitting too. today i feel mostly fine.. have some minor pains.. nothing like yesterday though. and this cycle has bene happeneing for the last few months.. like, one week i'll be fine and the next totally incapacitated.

i feel like everyone thinks im crazy or something.. i seemingly go from feeling fine to feeling like absolute shit... aside from the last few months, i haven't been majorly sick since my last surgery (in 2006). maybe i've just forgot what it feels like to be sick with crohn's.. haha. thank-you repression. lol

but yeah, what are others experiences with symptoms. do your change drastically from to day to day.. or week to week.. or do they just linger on all throughout.. any ideas what would be contributing to my symptom changes.. (its not a diet thing btw).

 

[Rebecca85]

I can have this. I feel fine for ages then out of nowhere I get a crippling stomach ache. If the pain is bad enough I can vomit. The only treatment I have found that works is a max dose of codeine (60mg) plus paracetamol, a heat pad, and a lie down! (yes the lie down is crucial, if I don't rest the pain won't go away). It is usually linked to something I ate- though it can be hard pinpointing the culprit. I stick to a fairly low residue diet and that seems to help.

If you don't think yours is caused by diet, you should go see your doctor because extreme pain and vomiting could mean you are getting partial obstructions.

 

[cruxy]

I do face drastic symptoms changes from time to time, and when i face what you are currently experiencing (not being a result of diet) then this would be signs that a flare up is on the way!! I suggest that you visit your doc before you end up with a severe flare up...

 

[Dexky]

Hi Crohndee, I'm sorry I can't help with your question but if you'll repost in Your Story, you'll be seen by more members. I guarantee you'll find you are not alone with your symptoms!!! Welcome and good luck!!

 

[crohndee]

thanks for your replies guys. yeah, saw doc today. he requested an urgernt CT. going in a few hours. feeling so nervous and scared. i really hope the results are not too bad. in the past, everytime things have gotten bad, its resulted in surergy. i really hope i dont have to go down tht path again.

 

[DustyKat]

Hey crohndee,

Keeping my fingers and toes crossed that all goes well! You are doing the right thing though regardless of the outcome. It'll be OK no matter what, we are here for you. Please keep us posted on how you go........................

:goodluck::goodluck::goodluck:

Dusty.

 

[Crohn's 35]

Welcome Crohndee, so glad you are getting looked after, sounds like you are obstructing A ct scan should show something, hope you find out really fast. I would follow up with a colonscopy. So sorry you are in so much pain. There is no set rules for Crohns, it is so undpredictable, food doesnt get thru a narrowed area, you are in pain. You could have a spastic colon too, very common. Keep us posted ok! ((hugs))

 

[Zalanicht]

Depending on how the Crohn's is in the body changes what it was like for me. It hit home and brought back bad memories when you said how painful it was getting out of the tub. If there's no complete blockage then it could go from pretty good to being terrible just based on what you ate.

 

[crohndee]

Thanks all for being so supportive, welcoming and informative.
My doc gave me a brief rundown of the results yesterday - basically lots of narrowings 50cm inflamed bowel... so yeah, back on the cortisone.. and talk of humira (as i had a bad reaction in the past to infliximab)..

The CT also showed some spots on my spleen :/ doc has not idea what it means.. he said could be nothing or could be something. Anyone else ever come across a finding like that?

 

[DustyKat]

Thanks for the update! I hope the meds do the trick and surgery is not required. Not sure about the spleen, I know there is an EIM of crohns that causes nodules on the lung, maybe they can also develop on the spleen? (((shrug))).

Take care,
Dusty

 

[crohndee]

thanks dustykat.. that's exactly what my mum thought when i told her. she tries to keep fairly up to date on her crohn's news. i'm going to have an ultrasound tomorrow. will be interesting to see what they find..

 

[DustyKat]

:goodluck::goodluck::goodluck:


And keep us posted! I'm as interested as you are.......:lol:


Take care,
Dusty

 

[gringo43]

Hi crohndee

Glad to hear you got some info...hope your meds get things under control..maybe the ultrasound will better define the spleen thing...hope it's something easily taken care of..hope you're feelin' better soon.

Jerry

 

[crohndee]

hello all...

feeling pretty scared at the moment


i got the results today from my ultrasound - ie the ones to determine what the spots on my spleen are...

basically my doctor still doesn't knwo what they are... he said he's never seen anything like it beofre and keep saying that 'it could be NOTHING or it could be something SERIOUS'

he wants me to have a PET scan to 'make sure it's not cancer'

whilst i know that doctor's have to do these things to like cover their backs... i still feel sick to the stomach thinking about it all.

the report says "there are innumerable small hypodense nodules demonstrated throguhout the spleen and overall the spleen is enlarged meauring 15cm in maximal dimension. some of these nodules may have been present on the previous study but the vast majority are new"

it also goes on later to say that "the innumerable small splenic nodules on a background of mild splenomegaly has a differntial that includes lymphoma".

has anyone here ever had any problems with their spleen? what did it turn out to be...

i'm trying to be strong and not assume the worst.. but am really struggling right now.

 

[Lisa]

Before you freak too much...read this... sarcoidosis .....

http://www.bing.com/health/article/mayo-125607/Sarcoidosis?q=sarcoidosis&qpvt=sarcoidosis

 

[DustyKat]

Oh crohndee I'm so sorry to hear you are going through this.

Enlargement of the spleen is not uncommon with crohns and as paso has said it may be sarcoidosis. Chronic inflammation of the spleen can cause granuloma's in the spleen as it does in the bowel with crohns.

I know this is a difficult time for you and it's hard to have to have a million thoughts racing around in your mind. Have you arranged to have further testing done yet? Please keep us updated. Thinking about you....................

:hug::hug::hug::hug::hug::hug::

Take care,
Dusty

 

[crohndee]

thanks paso and dusty for alerting me to that info. i hadn't heard of it before. if reading bout it i mentioned it to my doctor today.. and he was all like 'why are you asking' styles.. like wtf. but he said it coul be a possibility. so yeah, that is good to know!

he arranged for me to see a hematologist next week... so yeah, will determine further testing then...

he mentioned some options..
1) biopsy
2) remove spleen.... then test to determine if cancerous. again wtf!!
3) do another ct in a few weeks to see if any change
4) pet scan... well, he thinks that the hemotologist doesnt want to do that because he thinks it wont reveal anything..

so it seems like biopsy most likely... although im not very keen on that idea... because the 'spots' are so small he said it would be hard... also said there's risk of bleeding and that they dont normally do biopsy of spleen... bah.

 

[DustyKat]

Haha would have liked to see the look on his face!

Good luck with your appointment and let us know how you get on. Will be thinking about you. :hug:

All the best,
Dusty