My story

[Bradon]

my story

Hello all.

My name is Bradon I'm 25 i live in Canada in British Columbia on Vancouver island.

My story begins a couple years ago i guess, I went to the doc about a lot of lower back and lower abdominal pain cramping and some blood on the Tp so he sent me to who would become my Colo/rectal surgeon who diagnosed me with a pilonidal cyst which he and i then researched got back together and went over the options we saw decided on a surgical technique he did a beautiful job and i have had no recurrence.

Almost a year after my surgery i went for about 2-3 months with soft to liquid bowel movements my knees and shoulders were sore all the time i was tired had no apatite and lethargic vomiting almost every morning sometimes until noon the cramping was back big time so back to the doc i go blood work came back OK and CT showed enlarged lymph nodes in my lower abdomen so more scans and blood work they don't think its cancerous and then the colonoscopy man did that suck but at least it showed positive for Crohn's not in the colon but in the bowel. well that was a week ago today and I'm not on prednisone and salofalk and feeling like crap i cant sleep for 2 hours after every salofalk dose I'm nauseous crampy and have to go at least two to three times after each dose too. The prednisone is giving me insomnia big time.

So thats the story tell now, i go to see my family doc on Monday to talk about how things are going and would like any advise from you all on what may have worked better or helped control some of the side effects of the pharm's. Thanks for reading and hope to learn as much as i can form all of you.

Regards,
Bradon

 

[Rebecca85]

Hi, and welcome to the forum!

Are you taking your prednisone in one go, first thing in the morning? If that's not helping with the insomnia, it might be worth asking your doctor about something to help you sleep until you're off the pred (a low dose of amitriptyline has been used by some members, and they say it really helped with the side effects).

As for the Salofalk, occasionally people do respond badly to the meds. Salofalk is a kind of mesalamine / mesalazine preparation that is primarily used for disease in the colon, it passes through the small bowel intact and dissolves in the colon. It might be worth trying Pentasa, which is also mesalazine but dissolves in the small bowel. Either the Salofalk is irritating you because it's dissolving in the wrong place (in which case Pentasa should help) or you might be allergic to the mesalamine (in which case you need to look at a different med).

Hope that helps!

 

[Bradon]

Thanks Rebecca,

I am taking the pred in the morning 50mg a day and the salofalk i take three times a day 2 500mg pills each dose. the cramps the nausea and the bathroom visits were bad enough but not sleeping relay sucks. I will ask my doc about the Pentasa thanks for that.

 

[Rebecca85]

50mg? no wonder you can't sleep!

 

[Bradon]

I take it that thats a high dose? should i be talking to my doc about this?

 

[Rebecca85]

It's not that high really, I didn' mean to worry you! I have instructions to take 40mg in the event of a flare, but others on here have taken 60mg or more.

 

[Bradon]

oh OK, no not too worried I'm lucky i relay trust my doctors opinions they have done a great job so far.

 

[Crohn's 35]

Hi Bradon, welcome to the forum and another Canadian on the board. I have been on Salofalk but like Pentasa and Asacol, they are in the milder drugs and less severe stages but.. 50mg of Pred is pretty high for most and at 40mg I am awake for 48 hours at a time when I start on them. Take them in the morning and try to not drink caffeine and if you do at least slow down. Pred is not our choice of drugs, it works in the higher doses, usually and can make you eat and feel better but it is best to be on short term, Pred dose alot of damage to your bones. Make sure you are on a good amount of Calcium and Vitamin D3 long term affects are not affected a much.

Depending on where and how severe your Crohns is, and scope results should tell the doctor what is best for you and your Cd. All meds affect us differently too. Sorry you have this crappy disease, but you will learn alot more here than from most doctors. You might wanna check out www.ccfc.ca website for more information of CD. Glad you here.:smile:

 

[Nancy Lee]

Hi Brandon!

Just popping in to say hello and welcome from another Canadian Crohnie!!

 

[Astra]

Hi Bradon
and welcome

Rebecca has given you good advice regarding the Pred, I started on 60mg and it took 10 months to taper down, every time I hit 20mg I would get symptoms again, so I kept upping it til it worked it's magic!
I had terrible insomnia but I eventually changed my mind set, and went with the flow, instead of fighting it, meaning, just know that this is temporary, and it will pass, and eventually reduce as you taper.
good luck
Joan xxx