New Member!! (Would appreciate any advice!)

[M8ya]

Hi all!

I am so happy to find this forum because i have many burning questions!

I was diagnosed a few months ago, but have had my first flare up when i was 12yo (24 now) It had been suspected that i had food intolerances for a long time. I have cut out wheat, dairy eggs and yeast as my lips will swell up as soon as i eat them. I have heard that cutting out meat would be beneficial also (i am very reluctant to do so, as i would be left with only salad...!!) Has anyone else cut out these products? Or been suggested a particular diet to be on?

I have been complaining for years about lethargy, and was found to be very deficient in Vit D. The main thing i struggle with is tiredness.. Does anyone have any advice on how i could improve this? I have a good routine, try to sleep for 8hours, but i am beyond tired by noon everyday to the point where i do not concentrate.. (and i am a student!)

My mother had severe Ulcerative Colitis, and passed away at an early age due to complications. It scares me intensely to be diagnosed with a condition so similar, and having seen how bad it can get. Admittedly, i have not had many bad flare ups; since the age of 12 i have had 2 moderate flare ups ending up in hospital for a few hours, given steroids and sent home. Has anyone else got a mild case of Chrons.. can this change suddenly? I am aware that peoples experiences of CD varies greatly, i guess i am seeking some form of comfort or to know what to expect from this disease.

I have great admiration for people who are able to cope with this disease positively; and I am beginning to be positive (after a few weeks of being quite scared and upset).

Looking forward to hearing from you

M8ya

P.S. i have heard from a friend whose mother has CD that cabbage juice every morning has helped her greatly, and she has been in remission for 10 years following years of flare-ups. Hope this helps

 

[Liam]

Hi M8ya, welcome to the forum!

Are you on any medication? These can sometimes make people lethargic. When I was on infliximab it used to make me really tired, as did some of the anti-diarrhea tablets.

So sometimes it can be dehydration that is causing the tiredness, or it could be side effects of the meds, or it might be something else, but I would say it's likely to be one of the previous two.

I would suggest keeping busy, if possible, both mentally and physically, it helps against tiredness.

It's common that people with CD get tired easily, it's just one of those things unfortunately. It might be worth asking your consultant and or GP about this tiredness and see what they have to see about it.

I hope that's been of help to you.

 

[M8ya]

Hi Liam !

Thanks for your reply. I have been put on Azacol for three weeks, but i'm not on it anymore. I had suspected that it was the tablets that made me even more tired. I will take your advice on being more physically active, hopefully i'll stop falling asleep in lectures (though i don't know if i can wholly blame that on CD!)

Thank you for your advice xx

 

[Rebecca85]

I have changed my routine, I now finish work at lunch and come home for a nap! Could you manage to find time for a short nap after lunch? I am also working on increasing my fitness, with 15 mins of exercise at a time.

 

[Mountaingem]

:welcome:Hello M8ya-glad to have you with us! To answer your question about tiredness, just having an autoimmune disease like Crohn's or ulcerative colitis makes you tired.

There are many causes for tiredness when you have chronic disease. You might be anemic, you might not be getting enough protein (those of us with autoimmune diseases need more to help with healing and inflammation), or when you're flaring and your body is overproducing white cells, which drains the body. Also, because of your limited food options, you might be vitamin deficient as well. Chronic diarrhea/vomitting also causes vitamin/electrolite deficiencies that makes you tires as well.

All of this is very taxing on the body. Most of our cell repair and regeneration happens when we are asleep, so of course your body reacts to these complications of the disease by telling us we are tired, so we will sleep more and heal. Wouldn't it be nice if extra sleep was the only thing we needed to get well lol!

Just an idea, but if you could get your blood checked, this might provide you with some answers. Also, see a nutritionist that can help you with a diet that meets your nutritional needs and avoids the foods that make you sick.

I am so sorry you lost your mother! But please be assured that today we have many more options for treatment, and Crohn's/ulcerative colitis doesn't equal a death sentence.

Best wishes to you and please keep us updated!:ysmile:

 

[rygon]

I find doing some light exercise to help keep me awake a little bit more, but sleeping for only 8hrs a day would kill me. Need 10 at least lol.

Maybe worth making fruit juices to get your vitamins (im going to have a go at the this year).

I think everyone has different foods that can trigger them. Mine are anything high in sugar (grapes, sugary drinks, sweets, kiwis). sweetcorn, and whole grains (granary bread). I find lettuce if eaten a lot as well to be a trigger, but never had any problem with any meat.

Do you see a nurse/doctor who specialises in crohns? As said blood results do help to tell the whole tale of whats happening inside you

ooh and caffine, thats a killer for me

 

[Nancy Lee]

Hello M8ya and welcome to the Forum.

Crohn's itself makes one tired ..and although I didn't give into it
for years...I am finally having a nap in the afternoons and it really helps
with my overall sense of well being.

Make yourself at home here...there is plenty to read
and fun forums too!

Welcoming hugs~Nancy

 

[Astra]

Hi M8ya
and welcome fellow Brit (I love London)

Yes, I'm a big fan of napping too, when ever I can. I could fall asleep on a washing line, no problem!
Doc says I've got a mild case of Crohn's too, only had one hospital stay and steroids, up to now! I don't know whether that will change tho, it's an unpredictable bitch is Crohn's!
I'm sorry, but the thought of cabbage juice in the morning is enough to get me carted off in an ambulance, lol!
Enjoy the forum!
lotsa luv
Joan xxx

 

[vonfunk]

I've actually heard that cabbage juice can help, apparently the it contains vitamin U, (which isn't a real vitamin). There was study done in the 50's where the doctor showed that the juice of raw cabbage helped, but I don't think it has ever been properly studied. The wiki page is below.

http://en.wikipedia.org/wiki/S-Methylmethionine

 

[Mountaingem]

I tried raw cabbage juice, and the pain was excruciating. I ended up in the ER-the fiber ended up worsening the inflammation. I was in a flare at the time, so I guess it wasn't the smartest time to try cabbage juice lol! Even when I am in remission, though, cabbbage is a huge no no for me.