New to crohns

[jodes]

new to crohns

Hi, this is my first time on the forum.
I was dx'd with crohns about a month ago after suffering and being miss dx'd for many years.

Was wondering if anyone suffers from night sweats and is it a common problem with crohns ?

 

[Kev]

I did... hear it's pretty common. Bouts of inflamation in the GI tract can cause this. So can many meds we take. Either directly or as a known side effect. isn't it fun?

 

[Guest]

hi & welcome jodes glad you found the forum!

yes, and yes - regarding the night sweats. when i my crohns was at its worst, when i was a teenager, and before i had any meds or surgery.. i would wake up in the middle of the night, every night, with my sheet below me absolutely soaked with sweat. when i stood up, there was a me-shaped wet patch. its awful, really debilitating, but i think absolutely normal with crohns.

 

[Keara07]

Welcome to the forum! It's a fabulous place.

I had wicked nightsweats ( 3.5 months, every night!) before my surgery but they have stopped since. \i was told before the surgery it could be either Chron's or the predisone but considering \I am still at 46 mgs of the steroid I am leaning greatly towards the CD stricture as the main culprit.

 

[jodes]

my story

Hi guys, here is my short story. I am 39, married with 3 kids. From an early age i can remember having a lot of stomach problems, from having to stop at every toilet when i was walking anywhere to being in pain when i got to my desdination. I have always had to watch what i eat and if i ate the wrong things ,with in anywhere from a half hour to an hour i would be in the toilet in realy bad pain, then i would start sweating so bad i would have to strip down to underware, then the diarrhoea started and the nausea. My husband would kneal in front of me and hold me up (if he was home), when all this passed i have to lay on the bed until i got some energy back. The last time it happened it was so bad i was bleeding too and that did'nt stop, i ended up at emergency in the middle of the night and the nurse sent me home saying its just IBS (wich is what they kept saying it was) and i should know that it can happen sometimes. I ended up back there the next day in worse pain and the doc put me in saying it was'nt right (NO SHIT). after a week in hosp they did a colo and took some pollops,the tests came back inconclusive. It may be crohns the surgion said so they started me on pyralin and prednisalone 25mg and i hvent looked back. the doc explained that the crohns may not show in a blood test, they will keep checking. that was 3 months ago i am starting to reduce the pred by 5mg a week now and see how things go.

 

[D Bergy]

Hope the taper goes smoothly for you. With three children, you do not need problems with Crohn's also. They are a handful all by them selves.

Let us know how it works out.

Dan

 

[dizzyd]

Hi welcome to the forum. I am new too. Sorry you're having such a rough time. Hope the taper goes well.

 

[jodes]

thanks guys. It is really helpful to have the site to go onto when i cant sleep at night. Sometimes i cant sleep because of either my back pain or pains in the tummy that sometimes goes with the night sweats. The back is the one that keeps me up at night the most do many people suffer with back pain ????

 

[elp888]

I'd been having pain in my lower back, hip and spine and my doctor said it was common for this area to get inflamed as well as a complication with CD.... with me it got worse and worse (hurting more than the actual Crohn's pain), and it took weeks to find out it was actually an abscess. Not to scare you, but it could be something like that.

Good luck!
e.

 

[Kev]

Welll, I had back pains, not lower back, but upper, just below the shoulder blades. And, they were worse than any IBD pain. They were from pancreatic cysts, which apparently is another potential complication from crohns. If you've had issues w your pancreas, these can develop, and can be a real health concern if they break. In either case, it seems you have a complication of some kind; and it's worth talking to your doctor about it at the 1st opportunity. OK?

 

[jodes]

help me

[Thanks kev i am pretty new to the forum so get a bit muddled up but have just written a post( dont know where it somewhere in the forum.)regarding the fact that i am currently reducing the pred 5mg a week and in the last two weeks managed to develop shingles again for the secong time in about six months so i am suffering a bit with that espesially my back (which is were it is) in the middle of my spine the pain is so bad. Anyway i hope by reducing the pred it is not going to make my sympton's worse hope it makes sense to you have been up all night.

 

[jodes]

So Frustrated

I have had so many test on my back and no one can seem to tell me what my problem is. It is so frustrating sometimes i sit back and think maybe it is in my head, untill i start doing things that agrivate it then i think twice. I am not happy with my GP at the moment, my arriginal GP left, so i took on her replacement and i realy dont think she knows enough about the CD to help me. We have such a shortage of GP's here that it is realy hard to get a good one that will stay long enough to help or get to know you.

 

[jodes]

Hi again i know this sounds silly but what is a taper.

 

[Kev]

Jodes... no such thing as a silly question. On here, when someone says theyr'e on a taper, it usally means they're are gradually decreasing the dosage of a certain drug they take. In actual practice, I don't recall anyone using that term for anything but steroids... where the docs will have a person drop their dosage by so much each week till they are safely off a drug; rather than just stopping to take it all at once. Not wise to do a cold turkey stop on pred.

 

[jodes]

Thanks for that kev, well the taper was going well i am down to 15mg of pred then two day's ago my fingers started to hurt, more on my left than right and so did my toes, elbow joints, and sholder. It could be the shingles that is in my left side, mainly my middle back, but i dont think it is it seams more ike a flair. I woke up about 2am with pain in hand's, wrist, shoulder, and now my left hip. I think i will get in to see my GP i may have to go back up on the pred.

 

[Kev]

Could be a flair, but it also could be pred withdrawal. Very similar, but usually the symptoms of pred withdrawal are slightly different than those of a flair. Some new aches N pains. And, as the pred works it way out of your system, they do go away... Problem is, upping the dose will stop both... but with withdrawal, sooner or later you have to go thru it...

 

[jodes]

Your right i was just reading up on withdrawals and it could be one or the other. I am not going to go back up because, as you said i have to do it sooner or later. Time will tell if it settles good but if it doesn't well i will have to go see my GP. thanks again KEV.

 

[Kev]

No problem. Been thru pred withdrawal AND flares... pretty confusing at times. I'd suggest you continue as planned, and consult with your doctor at the first chance.

 

[jodes]

Well i haven't been to the doc, but everything seems to have settled. My joint pain has settled and i am not as tired. I actually feel better than i have in a while and i hope it stay's that way, i know it wont, so i will make the most of it while i can. I love my gardening and just being out door's, we moved into this realy nice house and it has been really frustrating not being able to do the gardening, but now i am getting stuck into it and it feels great, and the weather is good to. Thanks again Kev.

 

[jodes]

Well what a fun time i have had. I am of the pred and have been for a week and a half and i am now having a flare, which i think was bought on by stress and that frustrates me even more because for year's now i have been fighting with my oldest son's primary school, because my son has ADHD and instead of the school helping him they have branded him as a troubled child, and they continue to pick on everything he does wrong. I should have taken him out of there a couple of year's ago but i didn't, he only has till the end of the year to go then he is in secondery school. Anyway it has been sooo stressful in the last couple of week's and that is what has sent me into a flare.

 

[Kev]

Think that avoiding stress, minimizing it, not bottling things up.. not focusing on the 'bad'.. all of that IS the 'trickiest' part. I've made major changes in my life, I have put a lot of my 'materialistic' tendancies behind me, I've 'simplified' my life and my lifes' ambitions... AND, wherever possible, practical.. I've avoided or walked away from stressful events. Still a work in progress, but I've made great progress, AND I have forced myself to focus on how far I have come, not how far I've yet to go. It has helped tremendously

 

[Guest]

i can completely understand where you're coming from on the school thing jodes. i took my child out of school because of very similar problems, deregistered her, and then spent some time finding the right school, with the right attitude. one less stress for me, and a lot less upset for her.

its just so unfair that something which should be automatic, ie: the correct attitude towards your son's issues from the staff at his school, is lacking to the point of making you poorly. roll on next year, and lets hope the fresh start in a new school will be a positive one for him and you.