Newbie :)

Hello! I'm another newbie! I was final diagnosed ( well kinda) with crohn's in July after months of nothing but blood tests.
I was finally referred to a GI consultant in may (this year) an had my first MRI scan which showed parts of my small bowel was quite thickened. I then had a colonoscopy in July which showed my large bowel was inflamed and ulcerated. They took biopsy and put me on pentasa ( which I was only on for a bit because it gave me a extremely sore throat).
The next step was to start me on Azathioprine, but the biopsy results came back as normal (although seeing as everything has come back as and looks like crohns it probs is crohns). So I was put on a 7 week course of steroids which didn't really help. The consultant told me that because the steroids didn't work Azathioprine wont, so I was referred to a surgeon for a small bowel resection.
Luckily the surgeon said he thought it was the large bowel that was causing my symptoms an not the small (although I still may need surgery at some point) and that I should try Azathioprine!
So I am now really confused and fed up :frown: I'm seeing my consultant again in January. In the mean time I'm starting to struggle with my symptoms (diarrhoea, stomach pain, mouth ulcers and I'm always really tired).

Anyways thanks for reading and any advis with dealing with the lovely symptoms of crohns and any other advise would be greatly appreciated :ybiggrin:

Hello Hayley! Welcome to the forum.

I know you're going through a lot right now. I've been there. Your symptoms sound very much like mine. :hug: I have ulcerative colitis, not Crohn's. The only thing that seems different, is that the MRI showed thickening of the SMALL bowel.

I really hope they figure out what's going on inside of you soon. But in the meantime, I'm crossing my fingers for you that the Aza works.

Thanks for replying Jessi! It's nice to know there are loads of other people out there going through the same thing! Xxx

Hi Hayley, welcome

Like you I was only diagnosed in July and my colonoscopy biopsies also came back negative but theyre pretty certain it's Crohns!

Rachel x

Hi Hayley. It's my experience that a lot of doctor's have different opinions (as it seems you already know!) Maybe get a second (or third?) opinion? I have never had surgery for my disease, and I'm not a doctor, but to me it makes sense to exhaust all options before opting for the surgery. Hope everything works out!! xo

Really?! Has your doctors formulated a treatment plan for you yet? Mine keep changing there minds on what they won't to do!

X x x

I've moved a bit in the last 7 years (since I've been diagnosed), and am currently on my 3rd specialist. I have been on azathioprine regularly for over a year now & have had very few flare ups...usually only during times of high stress.

Hi Hayley and :welcome: it's very frustrating when the docs cannot agree on a treatment plan. However at the end of the day if the surgeon isn't ready to cut you open yet it can only be a good thing I personally think itis still worth tryng Azathioprine or something similar. Out of interest what have you been told about diet? Have you ever been referred to a dietician to discuss whether your symptoms can be managed/helped by what you eat?

Angrybird said:

Hi Hayley and :welcome: it's very frustrating when the docs cannot agree on a treatment plan. However at the end of the day if the surgeon isn't ready to cut you open yet it can only be a good thing I personally think itis still worth tryng Azathioprine or something similar. Out of interest what have you been told about diet? Have you ever been referred to a dietician to discuss whether your symptoms can be managed/helped by what you eat?

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Hi, a doc has mentioned seeing a dietician an trying a liquid diet a while ago, but no one has talked to me about managing my symptoms with diet yet, so I may asked about it.And I'm willing to give Azathioprine a go but I've been told it won't work if the steroids (prednisone) haven't helped. but I've been told by another doc that the dosage of prednisone an the amount of time I was on it wasn't long enough:runaway: it's all very confusing!
Thanks for the advise!

Xxx

Hi Hayley and welcome

1. What dose of steroids were you put on?

2. Since you're tired, I strongly suggest having your doctor test you for vitamin B12 deficiency next time you're there. Demand it. It's a very common deficiency for Crohnies and often causes fatigue.

3. The mouth ulcers you have are likely caused by other vitamin B deficiencies. Go to your local pharmacy and start taking a "complex B vitamin" regularly. They're not expensive and can make a world of difference for you.

4. I would also request that the doctor test you for vitamin D deficiency. Again, it's a common deficiency, especially since you're in the UK and proper supplementation can make a world of difference.

5. Start a food journal. Keep track of everything you eat and your symptoms and bowel movements so you can see if there are trigger foods causing you issues. Common ones people cut out are dairy and gluten but check our diet/fitness forum for more ideas there.

I'm glad you're here. We can help fill in the enormous gaps the doctors have obviously left for you. But you need to start educating yourself and becoming your own advocate. Take charge of your health and treatment, you'll be glad you did.

*hugs*

I started on 15mg of prednisolone for a week which was then upped to 30mg and reduced weekly by 5mg then stopped, I've been off prednisolone for 3 weeks now. thank you for your advise I'll ask for those bloods test next time I'm at the docs

Xxx

How long were you on the 30mg before the taper began?

A week

Xxx

I see. Well, the dose and duration is certainly conservative. We have a prednisone support forum that will give you some insight into what others endure if you're interested.

In my opinion, that you didn't have any meaningful benefits to that course of steroids is in no way indicative of whether or not Azathioprine is going to work for you or not. Now, what you COULD do when you go into see your doctor next and discuss Azathioprine, is bring up the idea of a TPMT test as that CAN provide useful information as to whether it will work for you or if it should be avoided.

Hi HayleyBerry

:wub: HI honey, I had to read your story a few times before replying. It is confusing what the consultant has told you. I think it strange that your consultant stated that, if pred does not work, then Azathioprine would not work. In my experience, it takes at least 3 months for a "peak effect" of Azathioprine, and you stay on Prednisone until Aza kicks in and you then can be weaned down from pred. Obviously, I am no Dr. and do not pretend to be--just letting you know what has been done in the past for me. If the main culprit is the large bowel--have they tried Asacol? It's a drug commonly used for ulcerative colitis or Crohn's Dz in large bowel. It's an anti-inflammatory that is relatively benign and can be taken long term. Dunno if it is prescribed out of the United States? I am also going to assume that they took several random biopsies of your colon? It's just such a strange disease and so different in everyone---just keep going---maybe get another opinion. And definately keep in touch with the wonderful people on this site--I can't tell you how much is has helped me!!!:thumright: You take care and hang in there, girly. Hugs, Dana