Suspected crohn's - having tests

Hi all, I've just found this forume and thought it might be good to hear/read of other peoples experiences. I first had symptoms last year, severe abdominal cramps and was given buscopan and then had endoscopies taken and then given steroids to take, to be honest they couldn't tell me what it was and I didn't like the Dr so stopped seeing him and didn't get the pain that much afterwards but 3 weeks ago I had a big flare up with the cramps again so went to a new Dr with all the results from last year and he has said that he suspects I have mild Ileal crohn's disease and has given me Budesonide tablets, 6mg to be taken in the morning. I am not at all comfortable with taking steroids, has anyone else had experience with these? I also had blood taken last week and am waiting for results, I know I'm being tested for B12 and folic acid but not sure what else and I'm just waiting to get an appt for a small bowel follow through (?) scan to then enable him to make a proper diagnosis, although on my patiend notes he sent me he does actually state that he has diagnosed this already. I don't really know what I'm facing here and some stories are really very scary so I try to avoid reading too much. My other symptoms are extreme fatigue, aches and bloatedness, is this all common too? Thanks in advance and apologies if I've rambled, the problem is I have no one else to ask, the Dr is good but so vague and I don't know of anyone else who suffers with this.

HI Sammyjo :welcome: You have had many of the drugs I had, Buscopan didn't do anything for me. Steroids are best to be avoided but if you are on Entocort you are in good hands there. It has way less side effects and he has given you the middle dose, most people start at 9mg. Hardly any side effects and is for mild to moderate. Pentasa is mild too they are the starting drugs to see how you progress. B12 and Vitamin D deficiencies are very common in Crohns and should be dealth with as soon as possible. Steroids and antacids are bone robbers, so make sure you take enough Calcium and Vitamin D3. They absorb better. Small bowel follow through isnt the worst test but you will swallow barium and you will be taken in and out of xray to watch it travel in the intestine for narrowing or blockages. Good test. Most likely a colonoscopy is in your future. try not to worry, makes things worse. Write down all your questions to you doctor so you dont forget. Let us know how the SBFT turns out. All the best!

Hi and welcome! As Pen said, Budesonide is much more mild kind of steroid with much less side effects. So, don't fret too much about this medication. It will take a little longer to work, as well, so you may need to be patient.

There are a lot of scary things you’ll come across on the internet; usually more negative things than positive. But it’s important to educate yourself, but try not to scare yourself. Remember each case is VERY different.

Good luck with your upcoming tests. The worst part of the small bowel follow thru is the barium. It's like a thick and not so yummy vanilla milk shake, but it is tolerable. Keep us posted!

welcome!!

barium is yucky but harmlessly unpleasant generally. My first meal afterwards is always something with strong taste to get the feeling out. I have never had useful result from the test weirdly due to back problems.

achenes and fatigue is common, unfortunately we are more likely to get arthritis issues. as for fatigue it can come from all sorts of crohn related cause.

my cuz doc once told her and i like it medical advice on the internet is like porn on the internet there is so good stuff other there but most of it isn't worth looking at.

Thank you to all who have replied, very much appreciated and I really feel a lot better about taking the Budesonide, after the Dr told me I will more than likely be on this for years I didn't feel happy at all. I'm not too worried about the barium test, I expected it would be yucky but it could be a lot worse.

Pen, I have had a colonoscopy already but the results weren't conclusive, apparently there was a blockage (they think it might be a stricture) and the biopsy came back with results which I was told could either be crohn's or might not so that's why the Doc wants me to go for the barium test to see more and if this isn't succesful then I have to have some sort of tablet that has a camera in it (all very James Bond) and go from there. I do feel very lucky though as I have private health insurance through my work I am able to get tested a lot quicker than most who don't have this luxury so I do count my blessings there.

I am going to go and get some calcium and vitamin D3 supps later, thanks again for advice with this and I'm hoping my Dr will get my blood results back within the next 2 days regarding the B12, again, I didn't know that I could be deficient in vitamin D so will be interesting to hear if he has tested for that.

Thanks again, I really do appreciate you all taking time out to reply to me and give me advice. As soon as I have results I shall more than likely be coming back with more questions I

With the barium test, it will clog up your toilet after! Get half a dozen toilet brushes that you can throw away after and scrub, scrub, scrub and flush, flush flush . Barium is a great testing material because it doesn't dissolve in water. The downside is when it come out it will stay in your toilet unless you make a big effort to get rid of it.

Quick update

I had the barium x-ray on Tuesday and didn't find it that bad afterwards to be honest. Now just waiting for the Doctor to get in touch for the results, they are ready today so fingers crossed I will find out very soon.

Thanks again to each and all.

Good luck and keep us updated

I am glad the test went smoothly. Let us know when you hear back about the results.

Thanks David & Jill, still waiting for the results, chasing the Doctor but although was told he'd try to get them on Friday still no news. I will let you know as soon as I know which hopefully won't be too long.

Test results back, clear as mud!

Well, I received a letter this morning from my Doctor to say that I need to book an appointment in a months time to see if I need to carry on with medication and if any more studies need to be done but to stay on the medication that I am on so that makes sense...not! Obviously, inconclusive. I have received the notes from the barium scan and roughly translated from Spanish to English via google come back with the following -

normal stomach without injury radiological features with a slight parietal thickening of the pyloric mucosal folds of normal morphology without parietal lesions

duodenal submucosal filling defects for possible thickening of the submucosa consistent with duodenitis

So, I am none the wiser. If I carry on with the meds then how do I know if I need to stop when I see the Doctor in a months time. I didn't really expect anything else to be honest though and I can't really complain as my cramps have almost gone now so I'm happy about that.

Thanks again to everyone that replied.

Diagnosis

I've just had a follow up appointment after the tests a few weeks ago and the Doctore has diagnosed Crohn's disease. I am strangely relieved as at least I know what is actually wrong now. He has recommended that I stay on the steriods until after Christmas and then I need to go for an Ileocolonoscopy to check the inflamation and I am about to start bi-weekly and then monthly B12 injections. Hopefully, I will start to feel a lot more like the old me soon.

when i was on steroids about half way through the course i felt indestructable they made me feel as fit as i was when i was 16 so hopefully they will make you feel the same, good luck with everything to come and i hope everything works out well

Bobby

Thank you Bobby, I'm hoping with a combination of both the steroids plus the B12 injections will make me have more energy at least. Anyone who has had the shots before, I would be grateful if you could advise if you felt any better...I don't know the exact result, all I know is that I am <150 on my B12, I will find out more when I go for the shot on Thursday.