Hi Gail, I am a newbie on this forum, but felt compelled to register and respond to your post as I know how you are feeling. I was diagnosed with Crohn's 16 years ago and had the same scary feelings that you have been experiencing. Before being diagnosed I had diarrhoea for 10 months, but didn't go to the doctors as I kept thinking it was a bug and would clear up soon! Of course it never did, and after lots of tests, endoscopy, colonoscopy, X-rays, it was eventually a barium x-ray that showed the Crohn's. (Back in the dark ages when I was diagnosed they didn't have capsule endoscopy technology). All I can say is that you will get some semblance of normality back once you are on regular medication. I am only on Pentasa twice a day, and Loperamide to help control the diarrhoea. This illness does restrict you to a degee, but I decided from day one that I would rule it, and it wouldn't rule me. The biggest single factor that effects me is stress. If something upsets me then I know I will get a flare up and feel terrible for a few days, so avoiding stress as much as possible helps. (not always easy I know). I hate feeling tired all the time as a esult of this condition, but I have 3 monthly B12 injections which help with this, and I do not eat much fibre. Only a very little veg with meals etc. One of the best things I have taken is Aloe Vera juice to calm the inflammation. It eased the stomach pains almost straight away, so maybe worth a try. You are probably feeling really low if you are anemic, but this is easy for your doctor to fix. As for surgery, I have not had to have anything in 16 years (touch wood) so stay positive, it could be a long way off for you yet. I do get regular flare ups, and then get put on Prednisolone to calm it down. It gets easier to cope with believe me, and eventually you will see it as an inconvenience rather than the scary illness that you are seeing now. Keep in touch so we can check on your progress, and keep your chin up. Terri.

hi Gail

I am new too this forum aswell and reading your thread made me feel for you so much, as you've explained everything i am experiencing.  Like you said it you thought it was a stomach ulcer i was told this and was getting tablets for an ulcer and returning to the gp every week nearly and waiting for 6 month for a camera down my throat to reveal everything was fine.  I started to think it was in my head when the results came back fine apart from anemia.  It wasn't until i was admitted in march 2010 that the doctors actually started testing me as i lost 3 1/2 stone and so ill couldn't do nothing but sleep.  The doctors have left me feeling angry and upset that this has gone on for so long.  I got diagnosed with crohns disease in the small bowel and the barium meal revealed i had narrowing, the consultant has sent me for mri small bowel scan which i will be getting on 3rd June.  He did say that might need surgery to remove the bad part between 6 mnth to a year.  I am upset that if the doctors found out early on i won't need surgery for narrowing.
Like you i also have been put on pred 40mg which i have been on since 31 march, i have only managed to get done to 30mg and have been put back up twice to 40mg.  Yesterday i was done to 30mg again, i don't have terrible pains but the growling and cramping in my stomach is worse today than yesterday.  Everytime my belly rumbles i can feel it twisting and turning.  Do you feel this kind of feelings in your stomach?
I also have pain in my pelvic area but the colop.. revealed nothing was wrong with my large bowel.  It goes round to my lower back sometimes, do you experience this too?
I have also been put on azathioprine which i was put on 31 march too this has been fine for me so far, all the blood tests have came back fine but it just takes so long for the drug to get into your symptom, and when it does start to work will i be completely off the pred.  

I also would like to say when i returned from tenerife in oct 2008 thats when i started to notice the problems which my stomach, but suffered a miscarriage in oct so i put it done to the miscarriage the pains in my stomach but looking back it was then i also started getting pains in my back passage too.  Could it be something abroad that tiggered it off?!

I hope everything works out for you, am hear if you want to talk its nice to relate to people who are feeling the same.

Take care Bo xx

Hi Gail,

You sound like you've been through the mill.  Its hard to come to terms with sometimes as your were made to feel like a fraud at times, this happened to me also A&E visits, being told your just constipated IBS etc is so frustrating.  It is a very manageable disease once they get it under control, I was diagnosed 5 years ago after 10 years of stomach problems, which then landed me having to have surgery pretty much straight away!  Which was the best thing all round for me.
There is light at the end of the tunnel I have been relatively well controlled now on Infliximab for just over 3 years and hold down a job, plan holidays go out with friends etc.
Strangley enough I was in cyprus when my symptoms took a major turn for the worst and it was them who took me more seriously than the docs here which is quite sad.  And to be honest I was just glad to be told I actually had an illness and it wasnt all in my head!
I hope things get better for you and you can start to get your life back to how it once was.
Any questions let me know

Gayle x

Hi Gail,
I was diagnosed way back in 1995. I went on the same treatment as you and slowly got better and better. I am in remission and have been for nearly 10 years. I am a real health freak now. I am a vegitarian and do loads of weight training and cycling, I found this really helped mentally as well as physically.

When I was really ill I felt there was never going to be an end but there will be! You must believe and be strong. DON'T LET IT BEAT YOU.

My philosophy is to keep as fit and healthy as possible to beat the bastard. I know this probably isn't scientifically correct but it worked for me.

Be strong! Good luck, Rob xx

How are you feeling now Gail?

Hi Gail,

I'm a newbie to this forum and your the first person I wanted to reply to.
I was diagnosed with crohns in October last year after spending the majority of the year with horrendous lower back ache, painful Hip joints, Hemmorhoids, exremely painful fissure, chronic diarrhrea, blood loss and sudden weight loss.

Like you, I was soooo scared. So scared that I thought I had Cancer. I'm married with 3 children, 36 yrs and started up my own business 2 years previous and just as i thought things couldn't get better, this horrendous, humiliating disease struck.

Like you, I have had some very low moments but i'm also a very stubborn person. When I thought it was cancer, i was devastated. It's not my bloody time.
I ended up in hospital and had a Colonoscopy. They took biopsies and found a polyp.

The Biopsy favoured crohns, the Polyp was villinous. potentially cancerous if undetected. When I found out it was Crohns, I was hugely relieved. It wasn't Cancer. I have my life back and I am going to deal with this crohns. I refuse to let it get me down. I consider myself luckier than a cancer patient. I have lost family to cancer.

To keep me strong and in control, I write everything about my illness in a diary. I have changed my diet to Low Carb and Low fibre. I find this works for me.  I keep all doctor and hospital correspondence and I always ask for copies of test results. I take medication to control the inflammation. I follow only ONE dietry book as to avoid confusion. I have incorporated my diet with family meals so I don't feel excluded and different. Now i now we all put our faith and trust into our doctors but as I said earlier, I am stubborn. I do not hang on their every word because as Crohns sufferers we have different symptons and reactions to drugs and diet etc, therefore I believe my doctor can't treat me the same as another crohns sufferer.  One example... I asked my gastro. if back ache and hip pain was related to crohns....he said no. Personally, i believe thats absolute rubbish because since being diagnosed and taking meds alonside my change in diet, my back and hips have never felt better. That doesn't mean i can run a marathon but it's enough to make me feel less trusting in the medics!

Gail..it's your body, you need to take control of it, be positive, take comfort that your not alone and don't let other peoples stories distress you. I know a lady who has had the disease for 35 years and she's kept it in remmision. No surgery at all. Just regular colonoscopies. Each time i hear something negative from my Gastro or from test results, I get a bit shaken up, but hey, i go with the flow and keep an open mind.

At this time my crohns is in remmision and it has been for 4 months. Although im having a Barium meal on the 20th this month to check my small bowel. I'm not happy about it but i take comort in feeling well right now.

I wish you lots of luck Gail, and hope you find what works for YOU.

Hayley
xxx