Need help and advice on GI vasculitis

[buffy12]

[Ayla Volunteer]

Can you give more details, Buffy? Would be useful to know the history of your illness before giving advice.

Ayla

[buffy12 in reply to Ayla]

Lost her bowel/ colon had emergency operation had blood problems and guy problems

[John_Mills Volunteer]

Is that Gastro-Intestinal Vasculitis Buffy?

[buffy12 in reply to John_Mills]

Yes that's want we have been given it's on medical notes she has no bowel/colon and has a costomy bag

[Ayla Volunteer]

Hello Buffy!

This is not something I have experienced myself, but I will attempt to explain what is happening to your daughter, as I understand it, and perhaps others will chip in with their experience.

It seems that vasculitis of the GI tract is common in many types of vasculitis, in particular MPA, CS and HP but it can affect the GI tract only, most commonly the colon. True vasculitis of the GI tract causes severe damage yet is very difficult to diagnose and there will be lots of different tests to determine what is going on. The symptoms are abdominal pain and bloody diarrhoea. Eventually, the inflammation causes ulcers and perforation of the bowel. Does this describe what your daughter has gone through?

Treatment will involve pulse cyclophosphamide and high dose steroids with the aim of achieving remission.

I am sad to realise your daughter has had such pain and has lost her colon but it seems, from the description of how this disease attacks the body, that her doctors had no choice other than to remove it. What treatment is she receiving now? Are you happy with her current treatment and the way her specialist is dealing with all this?

I would advise that you visit the specialist, either as a special appointment or, if it will wait, at her next appointment, armed with a list of all the questions you need answering. You are quite rightly worried and need some definite answers.

I hope this has helped and I am sure you will have more information soon from others on this site.

Ayla

[buffy12]

Thanks for this yes she has very good Specular Professor at hospital he has been very supportive she had chemotherapy and know on azathioprine hopefully spelled right also on steroids high dosage for the pain .she has colostomy which leaky and has blood in and plays up .

[Tony-LakeDistrict]

Hi I`ve had a colostomy for 25 years,& MPA for 6 years I think you should see your colostomy sister, and sort out the leak problem, this is something she should not have to worry about at this time

The colostomy sister will be able to offer different bags to try and she is the one to go to for advise

If the blood is coming from where the stitches have been removed try comfeel barrier cream.

I do hope all goes well, you are not alone

Tony