Advise needed

Hello, my names Natasha. Im 19 years old from london and I was diagnosed with Crohns just under two weeks ago! The past couple of weeks have been really hard, coming to terms with the fact I have got this for life and being on lots of medication including 40mg prednisone a day.

I have been doing endless research to try and get my head around the whole thing but I still have loads of questions. I have got my first appointment with my consultant in a few weeks time but when I came across the forum I thought I would give it a go.

After being in pain for nearly 9 months now and going through all the common problems related to crohns, l am now experiencing extreme lower back pain which will sometime travel to my mid back and I have only been on the Meds for two weeks! Is this common? My doctors prescribed me with codeine but this does not seem to be helping.

I also have loads of questions about how much diet can effect Crohns as the doctors never seem to talk about it!

Anyway sorry for the long message. Any advice would be amazing
Many thanks

Hey Natasha, welcome to the forum.

I'm sorry that you've joined the "club". It can be very hard to come to terms with and Crohn's disease can make a big impact on your life, if you let it. As you will see from this forum and around the internet, there are thousands (more like hundreds of thousands) of people with Crohn's all discussing their symptoms, diets, medication and surgical procedures. Hopefully you can take some comfort, if you want to know the answer to something, there is likely to be someone out that knows it.

Do you have a follow up with your Gastroenterologist? What's the current plan? Are you on Prednisolone for a couple of weeks then taking it from there? As Prednisolone can give you a good blast to help clear up the Crohn's but it's not good to be on it long term, although some people are. Generally you have Prednisolone to reduce the Crohn's and then move on to an immunosuppressant drug.

There are loads of options on the table. I was diagnosed when I was 11 ish, about 13 years ago now. Things have improved so much over the years.

In regards to the diet, there is no straight answer I'm afraid. For some people its diary, others it's fruit, or gluten. For some people diet makes no difference at all. It's really a trial and error thing on a individual level.

Feel free to ask questions, there is lot's of experienced people here with a wide range of experiences with drugs,diets, symptoms and surgical procedures.

PS. There is also a support group for young adults you should come join, http://www.crohnsforum.com/showthread.php?t=57196

Thanks for the welcoming

It has been surprisingly nice to see how other people have been coping and all in there different ways! I have been told so far that I will be on the prednisone for three months and im guessing go will need to go for another sig flex after that.

I have lost quite a bit of weight over the past few month so im not to concerned about my diet just yet but once I get off the medication it sounds like something I am going to have to work on!

I have joined the young adults support group so I look forward to speaking to more people and asking more questions

Thanks

for Natasha Champion:

Justayounglad is quite right in what he says. I know the diet thing is frustrating. You might try stopping dairy products for a couple of weeks and see if it helps. If not, not. You might try small amounts of *cooked* fruit such as applesauce instead of raw...made a difference for me. In my diet, this is also true of vegetables...frozen supermarket vegies have been cooked, frozen, and then cooked a little more when you get them ready to eat.

Have you asked your doctor about the use of loperamide for the diarrhea?

You can make it if you're brave. It gets better as you adjust to it.

Okie dokie Sounds like I have got my work cut out for me but will definitely start looking into the cooked fruit.

Doctors haven't mentioned that to me but shall enquire next time I see her.

Still concerned about my back pain! I haven't done anything out of the ordinary to make it hurt so much which make me thinks its the medication but I didn't think it would be this bad in just 2 weeks!

Thanks for all the help

I'm sorry to hear that you're in a lot of pain. You really should contact your doctor who may have a quick fix for you.

I know but unfortunately im not sure what else they would be able to give me so i will probably just have to wait it out for a while and in the mean time try and find things that will work for me!

I just read that you are going without and Meds! Dont know if i would cope with that! But good on you.

Hi Yasser,

That web link was interesting, i have never heard of this mangosteen before so will be interesting to read some more into it and see if it might be something to try.

Many thanks

Back pain can be from anything tbh. My nan put her back out ipicking up a newspaper!
I found I got back pain if I was flaring. I used tiger balm for any pain I get (can be got from boots or chemists) which helps a lot. So can ibuleve gel (ibuprofen is ok if its applied on the skin but as it is an NSAID it can play the stomach up if swallowed)

Apart from that maybe yoga will help.

There's loads of things to learn about this disease and a lot is trial and error unfortunately. If you look at the diet forum there is a sticky which shows what people can and cannot tolerate. For me it is corn, wholewheat, caffeine and most alcohol (it all plays me up but sometimes its worth the hassle for a good drunken night ), my docs do say that foods can impact crohns but have also said they dont know enough to give any info out so best check the internet Just watch out for any food/med that can cure crohns, at best its expensive and ineffective, but some are very dangerous

NatashaChampion said:

Hi Yasser,

That web link was interesting, i have never heard of this mangosteen before so will be interesting to read some more into it and see if it might be something to try.

Many thanks

Click to expand...

Oh btw I'm not sure what he sent you but he just got banned for spamming the forum (trying to sell a health product), so I woudl take his info with a pinch of salt

Hi Natasha - I had really bad lower to mid back pain when I was on high levels of Prednisone (I was diagnosed at the beginning of December and put on 50mg of prednisone a day). I used regular paracetamol to help with the pain. I found when I got down to about 30mg of prednisone a day the back pain went away.

Diet hasn't made much of a difference for me - I switched to a pretty low fibre diet when I was first diagnosed and had the severe diarrhoea, but now that's stopped I seem to be able to eat pretty much anything. Having said that I am careful with portion sizes as I still seem to have little tolerance to overeating.

Hi rygon, i thought he was a bit dodgy! That would explain it haha!
I did talk to my doc about using ibuprofen gel but she felt that if i could cope without it then best just to steer clear for the time being just so i dont cause any more problems to my stomach.

Yoga is on my list of things to have a go at just haven't got round to it yet! Finding motivation is proving difficult:/

From all the different list of food and diet i can find i can tell it is definitely going to be trial and error which is annoying, would rather someone just gave me a list of dos and donts haha! However although its going to be a long process i think having something that i can take control of appeals to me. having something like Crohn's and having to take medication makes me feel helpless so i think being able to control my food will give me something to focus on even if its expensive

Thanks for all the advice and the heads up about that guy!

Hi DeniseE, 50mg is a lot!! Im just counting down the days to when i can start reducing my dose in the hope all the side effects will start to reduce. The pain is just making me irritable now and i feel sorry for the people around me! Haha

I definitely over eat! Food is such a weakness for me! I did try doing the smaller portions, particularly for my evening meal as thats when its worse for me but im so hungry from being on the pred that i just keep eating and regret it after! Feel like im on self-destruct!
But i am definitely happy to hear that once you reduced your dosage that things improved

Thanks you both x