Recently diagnosed and wanting advice

[Rae83]

recently diagnosed and wanting advice

hey there.
I joined this forum as I have just been diagnosed with Crohn's disease. I am 27 and feel like I am on the biggest roller coaster ride atm. I was hoping to get some advice from other suffers on food I should avoid eating (i have already eliminated quiet a few things), also what fish oil tablets seem to be best.

My speacialist has me taking sulfasalazine EN (two tablets twice a day), 50mg of prednisolone (oral dosage 50mg), predsol suppositories 5mg (once daily) and nexium (one tablet twice daily). I am on a gluten free diet as well as low-fat as I also have a hereditary liver disease.

The medication hasn't really had much effect yet, however I do get some relief from the suppositories. Is there anything else I should be doing to ease my pain?? any advice would be greatly appreciated.

I have a hundred others questions but will start with this.

 

[silveyk]

*Aussie Rae*

Rae,

Do you know what your pain is from (e.g. bloating, cramping, soreness)? Where is it affecting you? Is it a sharp or dull pain? How long does the pain last? Is it relieved by anything (e.g. like going to the bathroom or vomiting)?

For cramping with associated diarrhea, my spouse uses an antispasmodic called Hyoscyamine. For burning pain, she uses daily Asacol. However, we are still searching for the right regimen to ease her pain. No traditional pain medications touch her pain (like acetaminophen). NSAIDs (nonsteroidal antiinflammatories) and opioids (like morphine and oxycodone) make it worse.

Dr. S

 

[Rae83]

I have had a really rough time with the pain and so far has lasted 6 weeks straight, I have had a few ok days but most have been really bad. I have bloating, severe cramping, major tummy gurgles, Hot sharp burning sensations straight up the backside, constant lower back ache. This has been accomanied by being queezy (occasionally leading to vomiting) and bloody/mucus diarrhea. I get no relief from going to the bathroom as it seems I am not long off and then I am back in there! I haven't got an appetite at the moment either wich i think maybe from the queeziness, I am not sure if this is a common occurance with crohn's?

I was only diagnosed last week after a month of tests and scans etc. and my doctor has told me it will probably take another 8 weeks before I get any real effect from my medication and dietry changes. But I have 3 children to care for and at times it feels like the crohn's is in charge of my like and not myself.

I really appreciate any advice to get me through this first hurdle and will certainly look into what you have suggested.

 

[alicat]

I really feel for you. I too have my moments/days/weeks where I feel like my crohn's is "driving the bus". I would look into perhaps an anti nausea medication. I suffer from quite a bit of nausea and vomiting so finding the right medication made me feel a lot better and like I could safely leave the bathroom without "remodeling the living room". I can only imagine how much of a challenge it must be going through this with 3 kids.
Stress certainly isn't going to help you, so try to have the best attitude possible and relax when you can. Certain things are just going to slip until you are feeling better and hopefully you have people around you who can help pick up the slack.
Good luck!

 

[xJillx]

Hi Rae and welcome! I am so sorry you haven't been feeling well. And I have to say, I am surprised the pred hasn't given you relief, yet. 50mg is a high dose, and most people feel better within a few days. However, the sulfasalazine will take weeks to take effect. I sure hope it starts to kick in soon.

 

[ev088u]

Welcome Rae!
sorry to hear you havent been feeling well.
I had loss of appetite too with my crohns, and im having a flare up now,
stomach gurgling, bloated and not much of an appetite. im on azathioprine, but it takes a little while to start working when you first start it.
The pred, should have started working by now! it took one day for me to feel a difference. It did make me feel alot better so heres hoping it starts working for you asap!!

Jess

 

[Rae83]

thankyou to everyone! I will ask my doctor about something to stop the nausea as it really isn't pleseant feeling queezy all day. My husband is a very big help and I am very greatful that he is a hands on dad and enjoys spending time with the kids and isn't afraid to pick up a dish clothes or peg a load of washing.

I am pleased to report that I have had 2 good days so am presuming the pred is infact doing it's thing ) Treatment is such a lifestyle change and I am happy that my hubby has offered to change his eating habits to support me through this, to a certain extent anyway he refuses to give up alcohol lol. It will take some time for me to adapt and absorb everything, but it is reassuring to know that others know what I am going through and have been/are in the same place I am now

 

[Keona]

Hi Rae83
Have you tried ginger for the nausea? I tried a lot of stuff for it and I hate gravol but they now came out with ginger gravol. It does not make you tired at all...in fact yo wont know you took it except it will give you some relief.
I dont know if you have that where you are.
I hope you continue to feel better

 

[CDDad]

How long have you been on the pred? 50mg is a pretty big dose. I see above you think it might be working. It always just took a few days to kick in for me. Just wait until your appetite goes bonkers soon. The joys of Pred.

 

[Astra]

Hi Rae
and welcome

Hang on in there luv, when the Pred strikes you will know about it! You'll feel a million dollars and bomb round with the kids full of energy and eat everything that's not nailed down!
Ask your doc for a med called Cyclizine, it works a treat.
lotsa luv
Joan xxx