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07-14-2015, 06:44 AM   #1
gavin1
 
Join Date: Jul 2015
Location: Newcastle, United Kingdom
What to do?

Hi, i had a colonoscopy 4weeks ago and started on steroids for suspected crohns. The colonoscopy showed ulcers and infecyed areas. Ive had symptoms for 6years and diagnosed with IBS. Over the last 6months symptoms have been severe. Lots if abdo pain and discomfort, plus visiting the toilet often!! Since my colonoscopy ive had swellings behind my ears and ulcers there? Plus swelling to the left side of my face? Im feeling naseaus and fatigued most days, but still waiting for a diagnosise!! Ive also had very severe abdo pain. Ive contacted secretarys today to chase up consultant review. Any help is appreciated thanks.
07-30-2015, 08:43 PM   #2
Cindi Wright
 
Join Date: Jul 2015
Location: Texas
Gavin, hv u considered Remicade infusions?
07-31-2015, 04:07 PM   #3
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
Hi gavin1,

Welcome to the forum. Have you felt any better since you started the steroids?

Do you know where in your bowel the ulcers were seen? Colon or terminal ileum?

And did you have any raised inflammatory markers in your blood or have a faecal calprotectin test done?

Sorry for all the questions! Just want to understand a bit better in the hopes of helping

Which steroid were you prescribed? Entocort or prednisolone? And the dose?

If you find that you don't respond to steroids then you might want to ask to try enteral nutrition to help get you into remission, but if you're on Entocort then you could swap to prednisolone (this has more side effects though).

If you have a confirmed diagnosis of Crohn's then usually you will also be put on a maintenance med which can also help to get you into remission as sometimes the first line therapy of enteral nutrition or steroids alone is not enough. Maintenance meds are usually an immunosuppressant like azathioprine, 6mp or methotrexate and/or a biologic like infliximab (Remicade) or Humira.

I would also expect your gastroenterologist to want to do some small bowel imaging now to look at the extent of the disease in the parts of the small bowel that can't be seen with the scopes.

The waiting for a confirmed diagnosis and to get started on a treatment plan is really hard. I think you are doing just the right thing to try and push for a follow up appointment sooner.

You could also see your GP to see if they can request a faster appointment. And I would get them to check out the swellings as these may not be related and I think it is important to get them looked at.

I would also ask your GP if they could prescribe an anti-emetic to help you cope with the nausea. Are you able to eat and drink normally?

Know that if the pain is severe and you are unable to cope with it, if you have a fever or have a rigid distended abdomen, or an absence of bowel sounds, or no bowel movements, or are getting dehydrated then these are all reasons to go to A&E.
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
07-31-2015, 05:05 PM   #4
gavin1
 
Join Date: Jul 2015
Location: Newcastle, United Kingdom
Hi gavin1,

Welcome to the forum. Have you felt any better since you started the steroids?

Do you know where in your bowel the ulcers were seen? Colon or terminal ileum?

And did you have any raised inflammatory markers in your blood or have a faecal calprotectin test done?

Sorry for all the questions! Just want to understand a bit better in the hopes of helping

Which steroid were you prescribed? Entocort or prednisolone? And the dose?

If you find that you don't respond to steroids then you might want to ask to try enteral nutrition to help get you into remission, but if you're on Entocort then you could swap to prednisolone (this has more side effects though).

If you have a confirmed diagnosis of Crohn's then usually you will also be put on a maintenance med which can also help to get you into remission as sometimes the first line therapy of enteral nutrition or steroids alone is not enough. Maintenance meds are usually an immunosuppressant like azathioprine, 6mp or methotrexate and/or a biologic like infliximab (Remicade) or Humira.

I would also expect your gastroenterologist to want to do some small bowel imaging now to look at the extent of the disease in the parts of the small bowel that can't be seen with the scopes.

The waiting for a confirmed diagnosis and to get started on a treatment plan is really hard. I think you are doing just the right thing to try and push for a follow up appointment sooner.

You could also see your GP to see if they can request a faster appointment. And I would get them to check out the swellings as these may not be related and I think it is important to get them looked at.

I would also ask your GP if they could prescribe an anti-emetic to help you cope with the nausea. Are you able to eat and drink normally?

Know that if the pain is severe and you are unable to cope with it, if you have a fever or have a rigid distended abdomen, or an absence of bowel sounds, or no bowel movements, or are getting dehydrated then these are all reasons to go to A&E.
Thanks,

I had bloods taken but no raised inflammatory markers, although derranged liver function test? I was on a months decreasing dose of prednisolone 20mg, 15, 10 and then 5mg. Im still waiting diagnosise and review but colonoscopy showed ulcers in rectum and colon. Ive had ulcers in my groin and behind my ears plus have terrible bleeding gums. My legs feel as though ive been running and im very fatigued most days. Thanks for your help.
07-31-2015, 05:08 PM   #5
gavin1
 
Join Date: Jul 2015
Location: Newcastle, United Kingdom
Gavin, hv u considered Remicade infusions?
Is it any good and available in the uk?

Thanks Cindi
08-01-2015, 06:40 AM   #6
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
Some Crohn's patients do have normal bloods (normal CRP and ESR) while having active inflammation so it osunds like you may well be one of those people. In which case imaging is going to be very important for monitoring how well you disease is responding to treatment.

20 mg is a relatively low dose of pred. I guess perhaps they didn't want to start you on a higher dose without a diagnosis? But it sounds like you will need that higher dose to get into remission and I hope you can get seen by the GI soon so that you don't have to wait too long to start treatment.

Have any doctors looked at your ulcers in your groin and behind your ears? There is a metastatic presentation of Crohn's where people have Crohn's ulcers on other parts of their bodies but this is very very rare and so it can take a very knowledgeable doctor (either GI or often a dermatologist) to make this diagnosis. From the experience of the forum members with metastatic Crohn's it seems this presentation can be go without proper diagnosis for a while even when the patient is already diagnosed with Crohn's. Treating metastatic Crohn's is a question of finding the right Crohn's treatment for you - so the same meds but as with any presentation of Crohn's it is a matter of finding what works for the individual.

I too have the feeling of very tired legs so that may well be related. And as I'm sure you know fatigue is a symptom of Crohn's.

I think that it sounds like most of what you are experiencing is consistent with Crohn's and if the GI is still uncertain about a diagnosis and unwilling to escalate treatment then I would ask to try enteral nutrition as this is without side effects and would give useful information if you respond. I would also want further small bowel imaging as you may have disease in other parts of your bowel.

Remicade is also known as infliximab (this name is most often used in the UK). It is available in the UK on the NHS although to get funding approval you normally need to have had insufficient success with immunosuppressants first. There are many people who have done very well on imfliximab and it may well be a treatment you are offered.

Good luck. I hope you can get your follow up appointment soon.
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