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New and confused!

I started suffering with cramp like pains about four years ago, I went to my GP but didnt really get anywhere.
In august 2010 I got a really sharp pain in my side, which I thought was a bad stitch, I didnt think anything of it so just tried to ignore it and get on with things. After not being able to sleep through the pain, the next day i went back to my GP where I was sent to A & E with suspected appendicitus. After spending 4 days in hospital I had the op to remove my appendix but when I came round I was told my appendix had not been removed, the reason for my pain was an inflamed bowel. A few weeks later I had a colonoscopy which showed my bowel to be inflamed quite a bit. Then I sort of got lost in the system, but after a few moans I got an appointment with a doctor and was sent for a barium xray. It was when I went for my follow up afterwards that I was diagnosed with Crohns disease. The doctor I saw said she did not think it was necessary at that time for me to go on any medication and that I would be reviewed again in 3 months. A couple of days later I got a call from the IBD nurse at the hospital informing me a collection of other doctors had disagreed I should not be on any medication and I was asked to come in to collect a prescription. I was handed a prescription for azathioprine along with a long list of scary side effects, told the doctor was too busy to see me and sent on my way! I tried to get in contact with the doctor to express my concerns about the medication but i was pretty much ignored. The IBD nurse tried to reassure me about the meds but I really wanted to speak to a doctor. After a few weeks I gave up trying, untill about 3 weeks ago the stitch like pain reappeared its ugly head, so I spent ages trying to get through to someone at the hospital. Eventually I managed to get an appointment, but was told before I went in that they had to overbook to fit me in so I had to be quick! I was seen by a different doctor and after a few minutes was told I was going to be put on Predislone, starting on 40mg, reducing by 5mg per week untill a follow up in a month. Again, I was scared by all the side effects but the pain was so bad I couldnt even think about not taking them! Ive been on them for for a couple of weeks now and at the moment dont seem to have any bad side effects, just struggle to sleep some nights if I take my dose too late in the mornings.
I received a letter today stating what was mentioned at my quick appointment and that I am being refered for an urgent ultrasound scan. The letter says I may have a crohns mass, which im assuming the scan will confirm and that if this is the case surgery is needed. Im really worried about surgery as I feel like if it starts now, im just going to end up needing more and more as the years go on. I really dont know what to think or do, I know i may be a bit premature as I havent even had the scan yet but I cant help but expect the worst! I'd like to talk to the doctor about it in more detail but I feel like when I go back for my follow up after the scan it will all be rushed and I will end up saying yes or no too quickly without talking about alternatives.
Somebody has mentioned going to see a naturalist but im not sure if I believe in that plus its quite expensive! Id also like to know about herbal supplements but cant seem to find whats good to take.
Any help or advice would be much appreciated!
Thanks! x
 

Terriernut

Moderator
Dom, this must all seem completely overwhelming! I can understand. It wasnt till I had surgery I was actually diagnosed.

The pred is to help reduce the inflammation, and I am sure it is helping you. Yes, you need to take it very early in the morning, preferable with food. If you cant have food, try a shortbread.

If I were you as well as the barium WITH FOLLOW THRU, you need a CT scan. You need one ASAP.

Can you tell us what other symtoms you had besides the LRQ pain? Vomiting, diareah? Fever? If you do have a blockage, or a mass, surgery will be needed. Dont think we have surgery every 3 months!!! Many people here have had resections and had YEARS of remission! As for the drugs, you may be put on maintenance meds to keep it under control. Again, many people here have many years of remission and no problems with maintenance drugs. Sounds like they want to hit the disease hard and fast.

You are not alone, we will be here to support you every step of the way.
Welcome to the forum...
Hugs!
Misty
 

xJillx

Your Story Forum Monitor
Hi Dom and welcome! I really can't believe the lack of communication your doctor/office is providing. I don't exactly know how your healthcare system works, but if possible, I would absolutely find a new doctor! To think, you got a letter about your possible mass?! I can't imagine!

And I agree with Misty, try not to fear surgery. Many on the forum have had procedures done which have given them years and years of remission. Try to think positive and that you will be one of those people to say surgery was the best decision you've made. Keep us posted!
 
Thanks so much for replying!
Didnt really have any other symtoms, when im in pain I cant really eat and just feel exhausted all the time. Sometimes i feel a little nauseas but never vomitted or had much else.
Pred has taken away the sharp pain in my side, but every now and again I still get a crampy type pain the middle of my tummy, most of the time its bearable but occasionally I have to sit/lie down untill it eases, usually after a few minutes.
Im not 100% sure what the scan I am due for is called yet, the only reason I know about it at all is because the doctor put very urgent stamp on it and after 2 weeks I hadnt heard anything, so I called the hospital and they told me it was booked for the 15 june, the appointment must of been lost in the post. The lady i spoke to said she was going to resend it as there is some prep to do before. That was yesterday so if I havent reveived it by tomorrow I will call again to get prep instructions over the phone. If it isnt for a CT scan I will ask the doctor to send me for that aswell.
I really did have a hard time at first with the hospital but im hoping under the new doctor things can start moving forward!
I feel a lot more at ease now if it is found I need surgery, so thank you so much!
Before I joined this site I had read a few posts but now ive asked my first question I feel so much more understood! I dont really like to bother family with my worries and i sort of feel like they dont understand how much it can hurt sometimes and that im being a bit over dramatic!
Thanks again!
 

Terriernut

Moderator
Are you experiencing constipation? Or..pardon my bluntness...narrow stringy poos? Yes Dom....we lay it all out here. No holds barred. Trust me, we've heard and been thru it all, nothing sacred. What I'm thinking if you have is maybe a blockage. But who knows, it may only be a narrowing. I would think all of this could be helped by surgery, what they call stictureplasty.

As for your hospital and GI...well. Keep on them. I would guess the scan is the CT scan, but who knows what they get up to. CT scan and barium will be nothing by mouth after a certain time. If you are having a colonoscopy, which no doubt you NEED (gawd help us all) you will have 'THE PREP' to drink. Your toilet will be your friend, your very bestest friend. As you will need to be EMPTIED before they can put a wee camera up your behind to view your colon. They will put you out for the count so dont worry!!! The prep is the worst part of the proceedure. Good news...you wont feel a thing...better news...you'll be clean and shiney inside, just like a wax job! (I do try to keep a sense of humour about all this..please forgive me)

You keep asking questions. Keep asking til you get answers from the hospital and the GI. Have a good browse thru all the threads here...tons of info.

Misty
 
In regards to toilet issues, sometimes I get a sudden urge to go and sometimes im constipated. not really stringy!
Ive had a colonoscopy and yeah the prep was definatley the worst part but wasnt too bad! With the barium, afterwards was awfull! Sooo embarrassing my boyfriend was wondering why i was emptying buckets down the toliet (i was trying to get rid of the chalky stuff that was coming out!) Wouldnt like to have that again in a hurry!
Well my scan is wednesday so we shall see what im in for! Im just glad im being seen and hopefully on my way to getting sorted!
Do you think the pain in the middle of my stomach is crohns? The doctor only ever seems to check and record the pain and hardness on my right side?
Dom
 

Terriernut

Moderator
Tell them about ALL issues..all pains wherever they are. Joints, headaches, fevers...all of it. Think real hard and write them down. We all forget when we get in front of them!!

Hope its just a CT scan!!
Good luck! Please let us know how things go!!
Misty
 

ameslouise

Moderator
Hi Dom and welcome!

Good luck with your upcoming test. I hope you get some answers - and that your doc has time to follow up with you and answer your questions!!! Like Misty said, write down everything you are experiencing - CD has many side-symptoms that you might not think are even related to bowel disease - joint pain, eye inflammation, extreme fatigue, canker sores, unexplained rashes. The fun never ends!!!

Keep us posted - hope the test goes well - Amy
 

DustyKat

Super Moderator
Hi Dom and :welcome:

You have had fab advice so not much for me to add! The pain in the middle of your stomach, if you mean the middle of your abdomen, like around your belly button, then that is quite normal. My son has just had surgery and he had many months of issues with a mass in the RLQ. The pain he had also radiated into the middle of his abdomen and the docs weren't at all surprised that it did, they too mainly focused where the mass was as they were more concerned about if it was changing or not.

Good luck and keep us posted on your progress!

Take care, :)
Dusty. xxx
 
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