Hi, I have been recently diagnosed with IBD they wont or cant say if colitis or crohns. Im on prednisone and starting azathioprine soon. I dont know anyone else personally with IBD and feel isolated depressed and cross about it all. At the moment Im finding it hard in my relationship with my partner as I feel like im always burdening him with it.....although hes usually very good about the whole thing sometimes I feel like Im dealing with this illness alone as he does get sick of hearing about it.....any tips please anyone on dealing with the emotional fallout ths disease creates please???????

Hi, I feel for you and what you are going through. I have Crohns, was diagnosed in the middle of last year. Am on azathioprine (I didn't do the steroid option as I have another chronic disease which fights with the Crohns). I, like you, really struggled with being so sick and felt like you also that all I could really talk about was being sick. It is a day to day thing. Some days are good, some days are bad. I think the thing to focus on is that you do get better, and that this disease whilst awful, is not as bad as some out there. Humour is also a great leveller, I can't count how many 'toilet' jokes have been made at my expense but it helps. I actually found by keeping busy and listening to my body helped. I managed to keep on at work (although I don't know how) but it kept my brain stimulated and took my mind off it. I also slept when I needed to sleep, read a book, listened to audiobooks and when I started to feel a bit normal, I went back to the gym and now I go everyday and do a half an hour walk on the treadmill. Even though I might be pushing myself, I am trying to get a little semblance of my life back. These are all the things that helped me. I hope you find my rambling of some use and good luck with it all.

Thanx that does help I know what u mean by good and bad days tho i guess Im just not in the best place right now. But it does help to hear from other people who are going through the same thing. I have four healthy kids and I am grateful of that Have you had any side effects from the azathioprine? I am a bit scared about taking it mainly cause of the cancer risks but my GI says I dont have much choice.....plus I hate the steroids!

Thanx Jae

Hi Jae,

Did you get a diagnosis?

I have had symptoms of UC for just on 50 years and may have some observations which could be helpful.

cheers

Hi, The pathologist wont call it one or the other but my GI calls it Crohns. But so far I have no inflammation in my small bowel. I get mouth sores, sore back and joints, headaches and general exhaustion. Ive been on azathioprine for about 2 months now and my bowel seems to be settling down a tad.....touch wood! But all the other symptoms are still there. I have drastically changed my diet and that may have helped too. Any insight would bee great thanx

Hi Jae,

I have UC, started in 1959.

Have not needed medical attention since 1999.

I believe with these types disease diet and lifestyle are so important.

Find ways to be very mentally stimulated and take as much exercise as time and opportunity permits.

Recently I returned from several years in China.

They have little incidence of either disease , maybe genetic.

But I am not ethnically Chinese and it is where my symptoms almost disappeared.

Check your acid / alkaline ratio of your daily food intake, should be 80/20.

Some thoughts on China.Eating there follows strict protocol.

Raw fruit and green tea at the start of eating.Prepares the digestive operation.

Alcohol(if taken) with the meal, not before.

Chopsticks require slow consumption. I completely lost the bloats in China.

One picks at the food and each mouthful is selected according to the trending of one's appetite. ( It is polite to leave some food)

The atmosphere is deliberately convivial. ( You are not allowed to frown while eating)

Their vegies are half cooked at a high temperature and form 80/90% of the main course. Lots of blended spices.

Red meat and dairy products hardly feature.But seafoods appear more often.

Because their tapwater is unsafe they always drink processed water( no chlorine)

My diet back in NZ is heavily into mineral water,a wide range of herbal and Chinese teas, yogurt, honey, papaya, banana, avocado,spirulina, fish oil, almonds. No alcohol,processed food or coffee. I spread a good coating of cinnamon on honey and all fruits and yogurt.

When changing diet it seems that plenty of fresh lemon into drinks may reset the taste buds and cure the craving for the old diet. Lemon may cleanse the system also it is supposed to be the most alkaline of all fruits.

There are many opinions which state that disease cannot survive in an alkaline body.

One of the difficulties we face in NZ is the fact that the medical profession usually does not recognise diet as a factor in reducing disease so pick a doctor who is supportive of your ideas and then it may not be such a burden on your partner.

good luck.

correction to the above message.

20% acid and 80% alkaline is the correct balance for food and drinks.

No soft drinks.

Thanks for your reply! Funny I have just been reading about acid and alkaline levels in the body and how it affect disease I will def take your advice aboard thankyou so much.

Lochiel, I found that interesting. I am waiting on a referral to a dietitian as I want to start attacking the huge weight gain I have had from steroids. Really hope that I can improve my diet and with it gain a bit more energy and better wellbeing overall.

Good on you Jae,

The lemon, if you take plenty, is supposed to reset and adjust your PH level for you.

Try some garlic, ginger and small ammounts of chilli with your vegies. Spoonful of manuka honey before and right after eating is good.

If you have the time go to Rarotonga, or similar, and lie in the hot sand for a week. Does wonders for the morale to treat yourself. No joking, lying in the hot sand is very therapeutic.

cheers.

Hi Jae,

I've only had Chrones 4 years & was pretty lucky to get a quick diagnosis. Pentasa did nothing for me & steroids suck, so I went straight onto the Azathioprine which so far is working brilliantly. I've had no side affects so far. I also consulted a clinical nutritionist & went gluten free, & had probiotics & omega-3 capsules. Steer clear of any acidic foods, fizzy drinks etc. Baby food is good All up, the diet & meds did the job & now I'm back to a normal life & near pre-Chrones diet & listening a lot more to my body.
In the first years, my husband was awesome! I felt bad for being so ill & him having to look after me so much, & didn't want to 'whinge', but he really helped me get through it. If I need to have a rant I try to spread it out among family & friends. & yes, potty humour does help! Don't let it get you down too much - things will get better.
Hope you get a firm diagnosis soon & get it all under control.

Hi thanx for sharing Im hav improved on the aza and am weaning off the pred. Still having periods of moderate flares but watching my food seems to help so thats something!

cheers.

hi there, I'm 24 and was diagnosed with crohn's at 14. I'm on pentasa 8 daily and azathioprine 200mg daily. I also have infliximab infusions every 2 months.
I have also had relationship struggles ever since my illness. I find that not having a handle on my health causes me to be snappy, rude and acerbic towards whoever is around (family, friends, lovers).
Much of my behaviour could have originally been attributed to teenage angst and growing pains but seeing as i am well through that stage of my life i don't have that excuse anymore.
I have been prescribed norpress and find it helpful in the general day to day depression, anxiety and mental fu**ed-upness of having regular bouts of ill health.
anyway theres my 2 cents, hope it helps.

I agree - it is blimin hard being in a relationship that is effected by IBD. My husband has Crohns and gets frustrated that he never has the energyto do normal stuff around the house etc and I get frustrated having to do everything around the house but also don't like to complain about it to him too much cause I know he feels bad enough about it as it is

Hay Jae. Why wont your Dr's definitively say if you have Crohn's or UC as this would have been evident on the histology report from the colonoscopy ? I'm so sorry you are struggling and can relate, albeit from a different perspective. Thank you for starting another thread.....I dare not start another one for a while...I've been dragged over the coals today about it as it is !! Anyhoooo, Good Luck hon. There have been some great ideas put forward on this thread.

P.S We should form a UC/Crohn's club and ALL go to Rarotonga to lie in the hot sand _ it's one of my favourite places on the planet

P.P.S Half a lemon in a cup of hot water every day helps to re-set your digestive PH