New to Crohn's

[shazzy]

Hi All,

I am a new member and recently been diagnosed with Crohns, intolerant to Mesalazine this resulted in dramatic diarrhoea then developed pancreatitis with Azathioprine also developed erythema nodosum on both lower legs joint pain and swelling of many joints from knees to fingers and feet. Now I have been referred to a rheumatoid specialist . Because I may have Reiter’s syndrome ? I have never felt so ill. On steriods waiting on next appointment in two weeks . Forever hopefull

 

[David]

Hey Shazzy and welcome to the community I've moved your post here to its own thread so that we can all properly welcome you.

Have they discussed what your next treatment might be?

We're here for you anytime you need us.

 

[Angrybird]

Hello and welcome to the forum

I am sorry to hear you are struggling to find a working med, I take it that a new plan of 'attack' will be discussed at the upcoming appt? We do have a treatment forum that is worth checking out so you can have a look into the alternatives to perhaps discuss with your doc: http://www.crohnsforum.com/forumdisplay.php?f=16. Out of interest what dosage of the steroids are you on, are they giving you any relief from symptoms at all? Also have you had any of your vitamin levels checked? If not also ask you doc to get these done, things such as B12, D and Folate among others should be checked.

There is a lot of helpful info and support here so do have a good nosy around.

AB
xx

 

[shazzy]

Hi Angrybird,

Thankyou for your help, I have been feeling a bit let down by the doctors involved in my care. Seeking a new GP today. Im on 40ml of steriods and I still feel unwell. I have now missed a total of 6weeks work. I have recently had blood tests & had other blood tests a few weeks ago ... still waiting on results . I have in the past few months been told by GP that I have had gastro and the Flu when it turned out to be medication. Have not been advised at this stage to take any vitamins. Hope you are well

 

[David]

Have they actually tested your vitamin levels or did they just tell you not to take any? Considering that vitamin and mineral deficiencies are very common in people in Crohn's and can make your symptoms much worse and healing much slower, that they would tell you that doesn't make any sense. I'd definitely ask to be tested.

 

[shazzy]

Hi David,

I had levels tested awhile ago and it all appeared to be fine. I had heart racey problems & ended up in the ED.They found I was low in Potassium and I was put on a drip. I have spoken to chemist about Crohns and vitamins , but my Specialist seems to think I dont need anything right now ? I have brought Magnesium Plus with Potassium & B6. I do find this all to be confusing , not sure who to trust !

Really nice to be able to chat to people who are kind & understanding .

 

[David]

The steroids can certainly affect your potassium levels as well as the diarrhea and other issues related to Crohn's. Magnesium deficiency is common when potassium deficiency is present. I think I'd request being retested next time you're in and ask them to provide you with the exact numbers and then share them here if you're comfortable. The lab reference ranges aren't always that good.

Be very careful with vitamin B6! Only take it if you're tested as being deficient and then under careful supervision. Too much can lead to neuropathy which is bad news.

 

[shazzy]

So much I dont know , ignorance is bliss ; ) The more I read & discover the more scared I become . Really trying to accept and go with it. I feel sad to read about children effected with this . I now know how many people are struggling, I hope more research is being done .

 

[David]

Some of the stuff you read can be scary, yes. But (and I realize this is easier said that done, especially at first) when you read stuff, try to feel empowered instead. The more you learn, the more you are going to be able to advocate for yourself and act proactively and thus, in my opinion, the more likely the scary stuff won't happen and you'll get the care you deserve.

 

[shazzy]

The steroids can certainly affect your potassium levels as well as the diarrhea and other issues related to Crohn's. Magnesium deficiency is common when potassium deficiency is present. I think I'd request being retested next time you're in and ask them to provide you with the exact numbers and then share them here if you're comfortable. The lab reference ranges aren't always that good.

Be very careful with vitamin B6! Only take it if you're tested as being deficient and then under careful supervision. Too much can lead to neuropathy which is bad news.

Hi David, I heard from my GI via email this is what she said,

Your latest blood results (03/09) all look great and the pancreatic tests have nearly returned to normal.
> The inflammatory markers are normal.
> You need to slowly bring down your prednisolone from 40mg to 30mg as of tomorrow then reduce by 5mg every 5 days until you are off it.

I have Rheumatologist appointment this Wednesday so happy about getting in so soon as Im still struggling to walk & in alot of pain !