My Crohns Confuses Me!!!

[jooles6377]

Hi, I haven't posted before and so I thought I would give my story as this disease is a confussing thing to have.

Why is it the Crohns dictates when you can be hungrey, what you can eat, whether you are in a good or bad mood and whether you are able to concentrate on tasks?

I dont seem to ever have a clear remission period, I always either have pain, D or feel down, depressed or sluggish.

I have been very fortunate that I havemt had to have an operation and my Specialist tells me that actually my symptoms are quite mild and I am quite lucky. I dont feel blooming lucky but I guess I am compared to others.

I have terrible food intolerances and food definately has the biggest affect on my symptoms. The main problem I have is that I cant eat anything with any amount of fibre. The pain is awful and I then get terrrible D. This means I end up eating very unhealthily and I dont suppose this helps either. I just get so down and im fed up putting up with being depressed and grumpy and exhausted and unable to concentrate all because my bowel doesnt work properly. My pain moves and can be in my throat (I get a deep voice when I have been ill) it can then be in the top of my stomach and then it in my bowel area. As I said what a confussing disease. Is it just me or do any other have all of these different problems or symptoms. Every day is a struggle for me.

 

[Guest]

hi Jooles, welcome to the forum

i guess that's just the way Crohn's is.. it affects us in all kinds of ways, and can be different for different people. it's a real pain sometimes, literally!

what meds are you on?

i've never had the voice change thing, not heard of that particular symptom before.. i'm wondering if you have acid reflux going on, & causing that?

regarding your diet, have you tried pureeing healthy foods & having them in a soup? (still staying clear of hard to digest things though). also maybe multivits or build-up drinks might help you get all the nutrients and vitamins you need.

 

[JillianB82]

First off, welcome to the forum. If you're looking for answers, this is the best place to find them.

I, like you, am new to this whole thing too. I've had symptoms for years, but was finally diagnosed just this past March. I too wonder "When will I not feel sick?" I have a hard time sharing with others around me just how I really feel. I just try to put on a brave face & struggle through it. I keep telling myself, "This will get better! You will not beat me!"

Like Ding asked, what meds are you on?

I'll check back soon!

 

[jooles6377]

Hi, the meds i am on are

Azathioprine, Mezazaline - Pentasa and colofac for cramps. I think the Azathioprine does work on occasion because I used to be much worse and losing weight. I swear by my homeopath though as I dont think id be so well if I didnt take my little remedy. She was a last resort at one point because I was getting so bad.

Thanks for your replies, as you know it really does help sharing with others.

xxxx

 

[Guest]

Jooles - what's the homeopathic remedy you're taking? i tried homeopathy last year (there's a thread on it here somewhere) but i failed because i just had so many different drops & potions to take i couldn't fit them all in one day AND maintain some sort of normality to my day. found it really restricting with all the rules about timing between foods/drinks/brushing my teeth etc.

 

[jooles6377]

Hi

I went to a homeopath and she is fab. (my kids go too and are so healthy) The first remedy that worked was called Noux Vom -(nothing to do with Vomit!!) and it really helped. I had to take 3 tablets per day for 3 days only and then I noticed a difference within about 2 weeks. I would say that like other medication it can wear off but the bliss of having a couple of months of proper poo is bliss, ha ha. I am due to go back and tis time she may up the strength of tablet or try something different.

Its funny but I didnt quite like it when I started to put on weight. One plus point to having Crohns is being thin.

Hope this helps

Jooles

 

[big.RHONDA]

Hi jooles!
it sounds like we experience very much the same symptoms, you and I. Although I've never heard of the voice change... but I do get ulcers in my mouth and throat and sometimes find it difficult to swallow because of them.

I recently discovered a book by Jerry Seinfeld's wife, Jessica Seinfeld. It is called "Deceptively Delicious" and it has all kinds of recipes that use vegetable purees, with the intention of feeding kids vegetables without them noticing.
I've started trying slipping some purees into things I would usually make and I find it makes it possible for me to get my veggies without the inevitable D.

My homeopathic doctor actually gave me a 6 week program every time i went to see him.. with a series of 3 or 4 different sprays that I would take 4 times a day for a few days.. then move on to the next.
homeopathy was the single most successful treatment i've ever had.. unfortunately not altogether very affordable

 

[big.RHONDA]

oh yeah and one more thing...

i've always found that if i eat very small portions throughout the day, and never too much of one thing.. If i get too many veggies, explosive D; too much dairy, I'm all plugged up... just make sure to balance it out and avoid the 3 meals a day rule.

I try to eat about 6 or 7 small meals throughout the day and its not so hard on my tum

 

[teeny5]

Have you had your blood work checked? If you are deficient in some vitamins or minerals it can really mess with your mood and make you exhausted.

 

[Stleger88]

welcome to the forum, I have never herd of the voice thing but everyone's case is different, thats what makes crohns such a pain in the a**(literally lol) but what are you currently eating and have you diagnosed any "problem foods"?

 

[panda]

I also fell into the trap of eating too many refined, simple carbs b/c they're easier to digest. I've just started seeing a naturopath, and she gave me a diet plan. So far it's making me a little bloated to be eating veggies again- no matter how cooked or pureed they are.

But I have to say I had a TON of energy, right from the start! So I think I was missing some serious nutrients, especially protein & B12. Definitely agree with teeny5 that you might want to get some bloodwork done to check that out.