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Hi All! Just been diagnosed!

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Crohn's Disease
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Posted 10/13/2008 1:50 AM (GMT 0)
Hi All,

 

I have been lurking on this site for a few days, so thought it was about time that I de-lurked and introduced myself!

 

I am 20 and have just been diagnosed as having moderate CD: but the doc thinks I have had it for at least 6 months (I myself believe I have had it for at least 2 years). I suffer from tiredness and pain...usually both at the same time which kinda sux!

So far, I have had 2 colonoscopies: one to diagnose and one attempting to enlarge the opening between my large & small intestine...the latter has failed: so am most likely on to 'cut'n'repair' surgery: the joys...

 

I just wanted to know how tough the actual surgery and recovery is? And also how do you cope with the tiredness? It has really got me knocked for six!

 

Jo

Posted 10/13/2008 2:53 AM (GMT 0)
Welcome to healingwell. Unfortunately dx delay is pretty normal. I was wondering what meds they have you on? I wish I had some great answers for you, but I am sure someone will come alone with better info.  I have only had laposcopic so I am not sure what good that would be.
Posted 10/13/2008 4:42 AM (GMT 0)
Hi and welcome. Surgery it had keep me well for about 5 years it was pretty much last resort i had no choice. Its only a temporary thing because it started up all over again. Now there are pretty good meds for this disease out there that will help you out, look into them first before you make the big jump to surgery.
Posted 10/13/2008 5:15 AM (GMT 0)
The tiredness is from your system attacking your normal gut bacteria - that is most of the source of Crohn's problems in one way or another. Think of it as a bad case of stomach flu and you'll be pretty close to what is happening. If you can get the inflammation under control, it does get better. Basically, the initial treatments are anti-inflammatory and a lot of people get relief - along with a bunch of nasty side-effects - from prednisone. Pred is your doctor's anti-inflammatory shotgun - it works on a wide array of problems. Actually, it just covers up the problem, but the relief can be worth the cost involved. There are several new treatments that look promising, but until a real cure arrives, you are best off to look at diet and supplements as a means of controlling your symptoms. By all means, follow the doctor's orders - just add vitamins (the doctor should suggest that to you anyway) and probiotics (doctors are really dense about this - they don't have a one-size-fits-all probiotic, so they don't even suggest them despite lots of evidence that they are as good as the pills that they push). The vitamins and minerals are to keep you from getting sick from malabsorption and the probiotics can help to control the gut inflammation and offer a bunch of other benefits. As for diet, some people report good results from the Specific Carbohydrate Diet (SCD). There is more info here - where it reads "your child" that is you!
Posted 10/13/2008 8:31 AM (GMT 0)
Hi Guys,

Firstly, thanks for all the replies! :)

Atm I am on Pentasa and Prednisone (and of course taking vitamins): the Pred is something I want to get off ASAP, but: as my partner and I have been trying to get pregnant for a few years now, and it's something that I really want to do before this disease possibly gets any worse: and whilst I am still young enough to manage my symptoms to a point....

And yes, surgery is pretty much the last option for me: the opening between my small and large intestine is the size of a pen lid: yep a, pen lid: itty bitty! According to doc, when he tried to enlarge it it was set like concrete: ummm...tough old me!

My actual name is Joan: but I go by Jo: Joan isn't exactly a common first name amongst my age-group, so my name slowly became Jo over the years.

And many thanks re: the diet suggestions: for the moment, I am a really big fan of just listening to my body and it's cravings (eg. my body often craves Vegimite, particular fruits or salads, usually when my body is lacking in the vitamins/minerals those foods provide) I have already worked out that I am slightly reactive to lactose... and I have always been more of a slow graizer when it comes to my food. And for me personally, small doses of sugar (eg hard boiled lollies) help keep my energy levels up, which is crucial because of all my energy problems of late...

But thanks so much for the ideas, it is greatly appreciated!

Jo!

Posted 10/13/2008 8:44 AM (GMT 0)
Hey, Jo! I'm 20, too! *And also have CD, which is why I'm here...* I was diagnosed in November 2006.... Man, sorry to hear you have to have surgery so shortly after your diagnosis....
Posted 10/13/2008 9:38 AM (GMT 0)
Hi, Jo, welcome to this forum, i have cd for 19 years, first struke me when i was 19. I did a resection in 2001 , before i was on predsilone and sulfalasina. After the surgery (4 years) the disease came back in the same place and spread in my colon i have a stricture of 3cm, but there is not inflamation. Surgery is the last resource when all possible medications fail.
Unfortunatley there is no cure for CD, just medications and surgery and for some people diet to control de disease. You can have periods of remission and periods of flares up.

I do not know how bad is your crohn, but my when my doctor found out that i had crohn i was in a pretty bad shape. I lost over 10 kilos and i was vomiting about 15 times a day. I remember when i went for blood test i fainted. I was lucky that i did a good recover and i did my first surgery just in 2001.

I wish you good lucky and remember nothing is impossible, things can changed for better. Take care!!!

38 years old, 7 weeks pregnant my first child, 100mg imuran, probiotic, fish oil, pregnacare.
Posted 10/13/2008 9:42 AM (GMT 0)
Jo, I had an excellent surgery recovery, i had a fistula from terminal ileum into my bladder, but i have a big scar in my tummy, which i do not bother with, when i go to beach or swimimg pool i wear biquini.
Posted 10/13/2008 1:20 PM (GMT 0)
Hi Low roughage diet might help for now . I had the TI area resected because of blockage and now 10 months later have no inflamation I still go for low roughage for food. The surgery was far easier then living with plugged up intestines and was out after 6 or 7 days. The meds didn't help me with the narrowing. lol gail
Posted 10/13/2008 9:31 PM (GMT 0)
Hi All,

Yeah, I wasn't that bad: I had lost about 5 kilos (in about 2 months) when I was first diagnosed. Pain, dizziness and tiredness are the three biggies for me: according the doc I had been losing blood as well (whenever he touched the inflammed parts of my intestines with the camera they bled). Would explain all my dizziness & tiredness problems though: lol!

Here's another question: how many of you found they had problems either falling pregnant or maintaining a pregnancy with this disease? My doc said my fertilty problems and one miscarriage may be linked to this disease: have any of you heard that before?

I naturally go for low roughage foods: I am not a fan of wholemeal/nutty breads etc. I do love plain pasta, soups, red meats, fish, chicken: fruit and vege when I crave it: it all really depends!


Jo
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