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Newbie of Crohn's

Hi all,

Well I am new to this site and Crohn's disease... only recently been diagnose in Sept 2009 so Im still in the stage of finding answers and researching this disease that is so totally foreign to me. I hope to change that soon tho.

Anyway here is my story to share and hopefully find support within a community that understands what Im going thru... sorry if I bore you as Im sure its nothing you haven't heard before...

My first real flare all started at the end of August this year, although I think I have probably had crohn's for at least the last 5 years with recurrent bowel/parasite infections every year and was treated with Flagyl which I have since found out is a treatment for mild crohn's... go figure so the docs may have been treating crohn's without realising it.

Anyway back to my first flare I woke up one morning in late August with lower back pain, vomiting and diarrhoea it continued on for a couple of days so off to my GP I go to get checked out... she says I have a virus and to go home and rest. So for the next week I rest but to only get worse, by this stage my back pain has gotten worse and is moving across my hip to the front of my stomach, I also have severe nausea and having trouble keeping food down. I go back to my GP after suffering for another week to be put on Flagyl yet again as she thinks I have another bowel infection, she can't seem to explain my back pain but says I must have hurt it at some point while throwing up and orders an x-ray and ct scan to see if anything shows up, which of course nothing does. I start the course of Flagyl which I take for the next 3 weeks with only mild relief from my symptoms. By this stage I have no appetite and have lost 7kg off my already slending frame of 50kg! I have finally had enough of being so ill that I can't even move so I call my GI specialist without going thru my normal GP. I felt like I was getting no where with her and she wasn't listening to me and keep saying you are depressed we can put you on meds for that... WTF. I know my body and this wasn't because of depression, yes I admit I was probably a bit down but that's because I was so sick and not getting any answers you would be depressed too.

I called my GI to be told by the receptionist that there was a month wait for an appointment at which I broke down in tears and said I wouldn't last a month! Lucky for me I had actually only seen this GI 5 months before and he had prescribe me Flagyl then so I told her I had taken the Flagyl as directed and that it hadn't helped and I didn't think it was just a bowel infection anymore... she must have taken pity on me cause she said she would speak with my GI and see what he says. I got a phone call back 2 hours later with an appointment for 5 days time. Things were starting to look up at least I might start to get answers soon. I had kept a diary for the doctor on how I was feeling each day for the last 5 weeks, what medication I had taken and what symptoms I had experienced each day, he said this helped a great deal as he took one look at it and said this is not a bowel infection! Within 4 days of seeing my GI I was booked in for a colonoscopy and endoscopy, it just felt great that someone was taking me seriously and wanting to find out what was wrong with me. I actually have a lot of respect for my GI he is a lovely doctor who takes the time to listen to what you have to say and is keen to answer any questions I have. He also calls me when he says he is going to and if I call to ask a question he always has returned my call or gotten the receptionist too on his behalf, unlike some of the doctors I have read in people's posts, I don't think I could deal with a GI who didn't listen to me and my concerns or took days even weeks to get back to you.

The colonoscopy had all the answers for me... the GI found some ulcers in my terminal ileal. I was then sent for a barium meal x-ray to see if anything else showed up. I can say these aren't at all pleasent but I manage to get thru it OK and the results were worth it as my x-ray showed up with more uclers all in the terminal ileal so Im assuming at least its a good sign that they are still only in the once spot? I was put on Prednison 50mg to begin with which made a huge difference, since being on Pred the nausea and vomiting stopped, the diarrhoea got better but now I seem to struggle with consitpation and I was finally able to go back to work. I do however still experience right abdo and lower back pain everyday and over the last 7 weeks everytime I tapered down my meds I would experience inflammation in my knees and ankles, this hasn't improved and has probably gotten worse. I was put on 100mg Imuran for the last 4 weeks and finished tapering off the pred last week.

I have been sticking to a healthy diet not that my diet was unhealthy before as I am on somac for reflux and if I drink or eat badly I pay the price, but I have eliminated wheat and dairy from my diet and also anything fatty or greasy as these seem to not agree with me, but apart from that my diet has pretty much stayed the same and I haven't noticed anything that really sets me off like some people. I have also been on a shake supplement to boost my weight back up to the 50 kg mark.

I seemed to be doing ok most days however the last week I feel like Im slowly going down hill again which is freaking me out... I have been experience severe upper back pain something I wasn't getting before I have even been waking up with it and then have the pain all day it seems to get better after yoga or exercise, Im not sure if its because I have stopped the pred which would have been helping with any inflammation in my spine. I also have been waking up with nausea and today I had the runs again. Oh and to top it off I have a slight pimply rash over my face, neck and back not sure if this is from the Imuran or not but will get it checked out next week by my normal GP if it doesn't go away.

I still have a long way to go and from reading others posts there are plenty of people worse off then me, but at present Im trying to deal with having crohn's each day as it comes it such a life changing disease. My GI hopes that by the end of Jan next year I will be in remission looking forward to when that days comes. Although he says it's going to be hard to establish when Im in remission as my inflammation markers when my blood is tested haven't changed off normal the whole time I have been sick so not sure why that is but just another thing not normal with me!

Ok well sorry for the long novel you just read, but I'm glad I found a community that can relate and understand what Im going thru and to bounce ideas and questions off of, its nice to not feel like the only person to have this disease. My hubby, family and friends have been fantastic this whole time but Im sure they get sick of me complaining bout how I feel and its hard as they still don't fully understand what Im going thru. I do appreciate them trying too as Im sure it has taken a toll on them especially my beautiful husband who I only married in May this year after 10 years together... bet he wasn't counting on this when he signed the certificate. :lol:

Thanks in advance for all your future wisdom ...

Crohn's 35

Inactive Account
Hi Tan and welcome to the forum! I have experienced alot of your symptoms and have ulcers that come and go and take flagyl and Cipro when I need to ( now in a flare and on it again). Imuran affected me bad, my liver area with pain so tried different types of immunosuppressants but dont work for me. Pred works great but masks the problem and when you taper...well it comes back. Back pain can be a few things and pain does radiate if you are flaring, also could be kidney stones, or liver problems. Get your blood work done and check to see if you are having symptoms from the meds.

Colonoscopies are the best way to find the disease, like you CT scans showed nothing on me and now they say they have high radiation levels equivalent to 10 chest xrays... I should be glowing by now.

Perhaps you may want to talk to your Gi about trying Remicade? It could work for you and keep you out of flares for a spell. I had two surgeries in the Ileum and dont handle dairy or fats at all. Finding the right drug is hard for everyone in the beginning because we all react differently to medications. Probiotics do help me and you just have to find what concoction you need for you to feel better. Keep us updated. Hang in there!
Hello Tan!
Welcome to the Crohn's Forum!

You're in good company here...
Great people to answer questions
and help you through the ups and downs of Crohn's.

Welcoming hugs~Nancy
Oh my gosh. You were so right, that was sooo boring!

Just kidding! You never have to feel like you are boring Anyone here. We are all going through the same things and looking for suport too.

I totally relate to a lot of what you are going through right now and I agree with Jettalady that you should ask your GI about Remicade. I can't say enough good things about that drug.

Welcome to the forum!
:eek:zythunder: :eek:zythunder: :eek:zythunder: :eek:zythunder:
not another aussie????? dont they just break everything when they get here???


welcome Tan

i'll have a read thru your story a bit later, just wanted to say hi to another aussie. now i should start doing my work again...... pfffft.