Bullous Phempigoid

[SharonV123]

I have had a couple of strokes, still suffer from TIA's on occasion, I've had a Subtotal Collectomy which ended with an Illeoscopy for life and now have Bullous Phemphgoid. I'd like to take up a sport or go swimming. Am I allowed to swim with what I have or can you think of any other sport I may be able to do? I tend to fall quite often and when I'm down it takes 2 people to get me back up and if I go onto my knees, the bottom parts of my legs go black, as if bruised. My right side hurts constantly and my right hand swells in the cold. Can anybody suggest something I could do please?

[Mary-intussuception]

Have you asked your Dermatologist this question? I don't know if there is a reason you could not go swimming as unfamiliar with this Autoimmune Condition.

Have you Googled NHS choices Bullous Phempigoid? If not - Worth a read, but doesn't say whether or not you could go swimming. The only gentle exercises I know of are swimming, leisurely walking or exercise in pool.

Hope you find out what's ok to do soon.

X🐥

[SharonV123 in reply to Mary-intussuception]

Hi Mary. I've been all over the internet and what I've found is very contradictory. I used to love walking, especially for charity. I've walked up Ben Nevis and the three Peaks, Pen-y-ghent, Whernside and Ingleborough. Now I'm lucky if I can get to my front gate without being in pain and needing to sit down. I just want to be able to do something. xx

[Mary-intussuception in reply to SharonV123]

Hi Sharon. I admire you! I've never been able to climb a mountain! In 2007 I was going to the shops on a mobility scooter. Not now, thankfully.

I'd multiple medical problems, some healed and some permanent. Never heard of Bullous Phempigoid before today though. Why do you think you might not be allowed to swim with this? Is it because the water treatments in the pool might sting if a blister bursts? It's not contagious is it so that's not a reason. Is there a SingwithUs Choir near where you live? What sort of things did you used to enjoy doing? Is there anything you fancy giving a try? I care for trapped water birds in our local park. If you lived near me you could come and help!

I was eventually diagnosed with Hashimoto's Autoimmune Thyroiditis and Hypothyroidism in late 2011. This was at the root of most of my health troubles. Have you ever had blood tests to check Thyroid function? I've read that people with one Autoimmune Condition often have another.

xx

[Mary-intussuception]

Hi again Sharon. About finding contradictory stuff on the Internet - I've Googled and come up with a lot of information that looks helpful. I usually Google the condition followed by NHS choices also NICE guidelines for the treatment of . . .

Here's some info I found - any use ?

pcds.org.uk Bullous pempigoid

(This is guidance for GPs from British Dermatology Association)

--------------------------------------------------------

I A Support Group Freephone 0800 018 4724 Telephone [phone] . email : [e-mail]

I read that you can get protective guards for use during sports activities. Have you asked your stoma Nurse about these or if you can swim with these conditions? We have a local group where I live. I'm not a member but have sought advice in the past and know they arrange trips and activities for any members interested in taking part.

Hope you find something interesting that you can manage to get to soon. xx

[SharonV123]

I enjoy history and there is a History Club nearby but I'm very shy when it comes to meeting new people. After I've met them a few times I'm OK. But I want something I could do to loose weight and tone myself up with. Since having the Ileoscopy my weight has shot from wearing size 14 to wearing size 22.

[Mary-intussuception in reply to SharonV123]

Sharon

I've only just seen this. I didn't get notification of reply sorry. All that weight , sounds like what happened to me. Are you sure you've had Thyroid Function tests? Ask them to do blood tests for Thyroid Antibodies ie : TPO and Tg to eliminate Hashimoto's Autoimmune Thyroiditis.

[Mary-intussuception in reply to SharonV123]

Will you try the swimming then? Or even gentle exercise in.the pool.

Xx

[Mary-intussuception in reply to Mary-intussuception]

Have you heard of

Pem Friends

pemfriends.org.uk

(Bullous Pemphigoid Support website)

Xxxx

[SharonV123]

I'll ask about having the test love. I wouldn't mind but eating isn't my favourite pastime. I'm lucky if I manage s sandwich at tea time and that's the only time I eat.

I'm going to look into gentle exercise at the new gym down the road.

No I've never heard of Pemfriends so I'll drop them a line too.

Thanks for all your help Mary. It's really appreciated. xx

[Mary-intussuception in reply to SharonV123]

Sharon, I have only just seen your last reply from 7 days ago! I didn't get notification, this seems to be happening to me a lot lately.

Do you know that eating breakfast is the best thing you can do whether you want to lose weight or just eat healthily.

My grammar was a bit out in my pm. That should be ,of course , who's Midnight? Am I right in assuming your cat? Do you have a photo?

xx