Newbie from Norway!

[paxifaxi]

Hello all!

I found this forum browsing for info on crohns, and thought it would be a good idea for me to get some support and help. So here I am.

I'm 29 years old, and I have had stomach issues since I can remember, but it wasn't untill 2005 or something a doctor did a colonscopy and found Crohns in my lower smaller intenstine. I didn't do anything about it for years, cause I got so tired of getting probed and poked at by doctores, and wanted to just run away from the problem, so its unfortunately gotten worse over the years.

Today I was at my specialist after doing an MR. He said I had Crohns and also a narrowing in the lower part of the smaller intestine (I think..). So I've been put on medicine: Entrocort 9mg a day and Imurel (azathioprine). I was in a way shocked, cause it suddenly dawned on me that I really had this decease and that I was stuck with it for the rest of my life, with no future way of getting cured. I'm really depressed right now, but I'm going to talk with my bf when he gets home, and maybe get some peptalk.

I don't know if my issues really are severe. I struggle with diarreah and stomach cramps every day, but I've been taking Immodium to function normally at work and to be able to do stuff puplic. I guess you know how it is.... Some days are better, but lately the good days have decreased. I have never had any surgery, or been hospitalised because of it, luckily. But sometimes the cramps are really bad and I get afraid that something is going to blow up inside, but the doctor said I didn't have anything to worry about unless I started to vomit. So I guess I'm ok.

And one more thing... I asked the specialist (I don't know if you have any shortcuts for it..) about any diets I could try, and if he had heard about anything working better then other. But he was really negative, and just said that NO diets works... I've read about different diets in here, and got really demotivated when he said this. He said nothing has been proved, and that the medicine was the only option for me really. *sigh* I guess that is typical doctors, isn't it?

Well.. here you go, this is me. Sorry for the rant. Hopefully I'll be more cheerfull later on. Now everyting just seems so depressing. It could allways be worse, eh?

 

[Astra]

Hi Paxi
and welcome

That's a good combo of meds you're on there, things should start settling down with them. Entocort is specially formulated to release in the small intestine.
Doc is right when he says diet doesn't cause inflammtion, but it can induce symptoms, such as diarrhea. When I'm active, I go on the low residue diet, it works by reducing the amount of bowel movements, slows them down and gives them a rest. Read about it here.
http://www.healthcastle.com/low-residue-fiber-diet.shtml

Once you get genned up on this disease you will be able to manage it, not control it as such, but be able to lead a 'normal' life!
Go easy on the Imodium, not ideal in the long term, your bowels need to function on their own.
Has your doctor advised you to take calcium supplements? Entocort is a steroid. Over time, steroids can be bone robbers.
Good luck with your new meds, any questions, fire away.
lotsa luv
Joan xxx

 

[Nancy Lee]

Hello Paxi and welcome to the forum!

There may not be a diet for Crohn's specifically BUT
what you eat can cause a flare up of the disease..
like too much fibre...or nuts, or popcorn..
Many different foods for different people cause a flare.

When you are really hurting...it is best
as Joan said to rest the bowel..or go on liquids for a
couple of days. I find rice makes my tummy feel better.

The doctor has put you on very good drugs and
they should help you soon.

I have visited your country and it is very beautiful!!

Once again welcome!
Hugs~Nancy

 

[rygon]

welcome to the forum, I know how bad it can be to be told you have this disease, but ive found life better knowing wat the problem is rather than not knowing. Whether yours is better or worse than others is irrelevant. You still have it and it can be a bugger so dont worry about asking questions or just venting cos theres loads of people who can help here

 

[Entchen]

Hi, Paxi, and welcome to the forum! We're glad to have you here and I hope that you soon adjust to taking new meds and dealing with your new Crohn's symptoms. You and I are on the same meds. I agree with the others re. calcium. Interestingly, my GI does not think calcium is important, but I trust my pharmacist more than my GI when it comes to medication side effects (pharmacist has the focused expertise), and he strongly recommends calcium and vitamin D. They're cheap and easy to take, so why not!

 

[paxifaxi]

Thank you SO MUCH for all your supportive posts, it really helps to know others that are struggling with the same issues and that also have experiences to share! Thank you for the link Astra, I will check it out. I think I will try these medicines now without changing my diet, so that I know what is working and not. I hope that with the medicines I will be able to go into remission, and maybe don’t use them for a while. Isn’t that a possible scenario? Should I then try to go on a diet to maintain the remission?

I feel its difficult not to take immodium at times, especially if I’m doing something special, that is going to the cinema, the hair-dresser, going away for the weekend with friends, and so on... But you are absolutely right, I should try to minimize it. I just hope the meds I’m on now will make my D go away.
We did talk about Calcium/D3 supplements, but I think he forgot to give me a prescription. Here in Norway you need a prescription to get Calcigran (or Calcichew for some). I actually work at the factory (Nycomed) where all the Calcium/D3 supplements are made for the entire world market, so I get a lot of info on the subject at all times. I still need a prescription though. I think I’ll just talk to my family doctor (Is that what you call the general practice doctor in English?) and get her to prescribe it for me.

Nancy lee: fun to hear from someone who has been in little Norway. I have heard that Canada has a similar vegetion and climate, so your country must be beautiful as well.

Rygon, you are absolutely right about the knowing bit. It really helps to know what I’m dealing with. I just need to get used to the idea I suppose. I have been trying to tell myself that it wasn’t so bad, and that I probably just had IBS or something, and that maybe the inflammation wasn’t so bad I would need drugs. The thought that I might need operation just blows me away. I really have an issue with hospitals, but I guess I’ll get used to that as well. I’m so glad I found this community. It really helps to vent out and get to know others who know what I’m going through.

Kelly, have you been on these meds for a long time? I’m just wondering if you have experienced any side effects like poorer immune-system, hair-loss, swelling in the face and so on… I read that these might be side effects, but that they are uncommon (except maybe the first one). I’m also trying to conceive at the moment, so I’m a bit scared for damage to the fetus. My GI (specialist?) told me that it normally isn’t a problem, but the normally part didn’t really reassure me.

 

[Astra]

Hiya Paxi
we have a pregnancy and Crohns section on the forum, this is just one of the threads


http://www.crohnsforum.com/showthread.php?t=14534

I think that once you've finished with the Entocort, you will have to stay on the Imuran for a long time to maintain. IMO diet alone will not put you into remission, it will certainly help to reduce symptoms tho, but inflammation may reoccur.
IMO not a good idea to stop meds.
xxx

 

[paxifaxi]

Thank you Astra! This is helpfull information for me. I will check out that video when I come home from work.

I have allways been so negative to medecins, cause I've heard all sorts of scary stories. If this helps me lead a normal life, then it seems worth a bit of trouble, allthough I hope I wont have too many side effects.

 

[Swirl]

I knew when you said you asked your doctor about diets that he or she would say that. They're only train to read reports from medicine tests. I just want to choke doctors! lol
I would say do search for things that people did to put it into remission. Not a program or a product sold by one company that promise a cure or remission

 

[Sheena]

Hi Paxi, just thought I would send a message since I am in Norway as well. My son is 17 and has had Crohn´s since he was 13. He is on Remicade and gets infusions every 5 weeks and has done this for about 3.5 years now, he´s really healthy and has received the most fantastic care in the local Hospital here in Stavanger, we were actually there today for a chat with his Doctor and then his infusion. Only thing is his diet...but I guess he´s just a typical teenager and Doc said the same! Anyway the reason I came across your post was because I was trying to find a Norwegian site for making donations to Crohn´s Disease, my husband is doing a car rally in September and has to donate money to a charity and what better than Crohn´s but so far I can´t find anything! I have written to the Crohn´s society in Norway about 6 weeks ago but heard nothing back! If you do come cross something then let me now! thanks