Love this site - do not love IBD :)

Hi there,

Just thought I'd introduce myself, I've been lurking on this forum for a few days and have already found so much useful information.

The skinny (no pun intended) on me: I'm a 27 year old Australian currently living in the UK and I've been struggling with tummy problems for the last year. Severe abdominal pain, diarrhea and joint pain are my major symptoms. Went through the rigmarole of doctors in Aus and was told I had IBS (no tests done other than bloods, I did have raised CRP levels but was told this was a "virus" causing my joint pain :yrolleyes. Tried to get on with life and start my overseas adventure in June (travelling through Thailand and Western Europe before settling in the UK for a working holiday), but after a few weeks of indulgent, boozy travelling I knew that something wasn't right. Eliminating dairy, alcohol, caffeine, all the IBS triggers did nothing and then I could add night sweats and rapid weight loss to my list of lovely symptoms.

The second GP I saw in the UK actually CARED enough to asked me the right questions and suspected CD/UC, I finally had a sigmoidoscopy a week and 1/2 ago and have been diagnosed with IBD (severe ulceration in the rectum and distal sigmoid), I need to see the specialist again in 2 weeks for a full diagnosis as to whether it's crohns or colitis. I've been put on Asacol 3 times a day and Prednisone 40mg for two weeks, then to drop by 5mg each week. The prep for the procedure was hell (the picolax made me vomit repeatedly and gave me the worst cramps ever!) and for days afterwards the pains got worse, not sure if I'm just getting used to the meds or if it was just still sore from the old camera up there!

It seems the last couple of days have been less severe, I still have very predictable episodes of diarrhea and pain every night but it's (mostly) more tolerable. To be honest I am sick of sitting on the toilet for up to 15 mins at a time, especially at 3am! Diet wise I am the very meaning of weak willpower, I'm trying to eat plain foods (white bread, rice, turkey, seafood, soup, I can handle corn flakes and soy milk in the morning although I know actual corn kernels are lethal). I just have a sweet tooth and a cheese addiction - bad news I know. If someone offers me whole grains or a salad I can scream "No! I can't eat that!" But an unhealthy melted cheese sandwich? Somehow my stomach doesn't matter in those few minutes of eating pleasure. And then I have pain in the belly, and guilt in my heart. Sigh. I'm working on my willpower. I know I'm only punishing myself long term.

I have been thinking of trying to have mainly liquids for a while in an attempt to feel better, are products like Ensure and Boost readily available in the UK in chemists? Or health food stores? I am a super big milkshake fan (in a previous life) so the flavours sound nice, and if they're lactose free I should be able to tolerate them. I avoid dairy (except lovely cheese of course), caffeine, alcohol, raw vegies, nuts, seeds and have been trying to cut down on processed foods (the old "busy lifestyle" excuse). I also have friends coming to visit this weekend and I've organised a dinner out - I'm such a foodie and it makes me really upset that I can't eat normally! I've sourced a restaurant with a really yummy sounding grilled seafood dish so hoping that will be okay for me.

I'd love to have some drinks with everyone but I've come to realise it's just not worth it, are people able to enjoy the occasional drink in remission? Every time I attempt it I get very ill the next day, although my body has gone untreated for a year so I guess anything would aggravate it. If I do have a couple I've found that Baileys on ice is most tolerable - quite strange given it has cream in it? I find wine quite acidic and don't even start me on beer and cider - gas, cramps and bloat! I'm contemplating sitting on (one) cocktail on Sunday night as it seems like clear spirits and fruit juice might be okay (again, just one) but I might chicken out.

Well that's me, thanks for reading and any advice would really be appreciated - I didn't get told anything as I was being wheeled out of my exam other than I was getting medication and I see the doc in 3 weeks. This site has been so helpful in understanding what's going on and what to expect (ie no instant results). It's going to be tough but the last 6 months especially have been a nightmare, so much pain and no answers, that I am glad I am finally getting a diagnosis and treatment.

Look forward to hearing from you!
Liz

Hi Liz :bigwave: I am like you with the weak willpower but we know if we don't eat the right things sooner or later it will catch up with you. The pain and bloat isnt worth it. I have half a glass of wine with food 2 times a year. I just figure with all the meds I am on, my liver really can withstand much alcohol. I also think I am allergic to it. Even sodas are not good, causes gas.

Most people avoid Prednisone like the plague, anything but that, unless it is a dire emergency. Long term just isnt good, too many side effects. Aside from diet, Vitamin D3 and calcium is most important. Checking your B12 and iron levels in blood test should be done. IBD can be very hard for a definite diagnosis. Glad you found us, hope to see ya around!

Hiya Liz
and welcome

Yes you can get Ensure and Boost over here.
My willpower is non existent regarding food and drink! But I'm ok if I stick to clear alcohol like vodka and lemonade.
I know that fried food is a bowel killer with me, so is red meat, so I stick to salmon and chicken.
I used to keep a food journal in the early days of dx, but know it all off by heart now
And that's the thing, in time you will too, and in time you'll be able to manage this unpredictable bitch!
Once the Pred has kicked in you'll find relief, fewer episodes and reduced symptoms. And any side effects? Just go with the flow, if you feel anxious with this med it will exacerbate your symptoms. Any questions, just shout, we're all here for you.
Good luck and
lotsa luv
Joan xxx

Hello Liz.
I hear you on the prep... One of tha hardest things I have ever had to take.
This is indeed a great place for information..
Welcome..

Hi Guys and thanks for replying! Well I did have an enjoyable weekend with my visitors, the trips out to dinner were ok I just made smart choices and I think the meds might be starting to kick in as I am noticing a decrease in urgency and frequency - I've started on a liquid diet today of Ensure for breakfast and afternoon tea and chicken soup for lunch, although I have allowed myself to have toast for dinner. I think I will do this for 2 more days and see what affect it has.

I haven't really noticed side effects, my appetite does seem to increase at night and I am a little bit irritable (trying not to take things out on my super amazing supportive boyfriend), maybe this is the pred? I have heard people hate this medication and I will be finished this course after 9 weeks (hopefully).

I'm just trying to stay positive, keep my sense of humour, tell my boyfriend he's wonderful and tackle things as they come! Once again this is such a welcoming, friendly space and you should be proud of the community you've built. Looking forward to chatting around the boards!

Liz :hug:

Hi Liz and welcome! I am glad you haven't experienced any side of effects of pred, but I sure hope it starts working its magic on you soon. Your low-residue diet will probably help reduce your symptoms, as well. If you decide to try to go back to your normal diet, you may want to try a food diary. Jot down what you eat and any symptoms after wards. This will hopefully help you figure out the foods you should avoid. And as you said, steer clear of the alcohol while you are flaring, but you might not have to write it off forever. When things are under control, I can enjoy a glass of wine or two without an issue.

I hope you feel better soon!