Metastatic Crohns Disease

[Swift]

Hello!

I joined the forum the other day and i want to say it's lovely!

I have been having a few problems with my Crohns for the last couple of months after a Gyne op, tummy aches, joint pain, mouth ulcers etc, i'm not on any meds, as i've been clinging to remmission for about 18 months now. Today i saw a Specialist dealing with skin issues. I have got a large area on my palm which is very sore, blistered and painful.
To start with i just thought i was using the wrong shower gel/soaps etc or the washing up liquid had reacted with me. Contact dermatitis, that sort of thing, but it didn't go away, not with steroid cream, antibiotic cream or anything else.
So off i go to a skin specialist and he listens to my past medical history, takes (painful!) biopsies, looks at my hand and says... 'you my dear have Metastatic Crohns Disease'.
Apparently it's when the cells of the body form in the same way as those in the gut (!)and is thought to be an autoimmune response.

So now not only does my gut not love me - my skin doesn't either!!!

But on the (sick) upside - i can see what Crohns looks like!!! :ylol2:

Please can there be others out there with this - please don't tell me i'm the only one! I know i can't be.......

 

[tamesis]

Yikes, that sounds incredibly painful!!! Was he able to give you something to help clear it up? I'm still new at all this and not actually diagnosed, so i don't have anything to offer other than **hugs** and i hope things clear up quickly for you!

 

[imisspopcorn]

Wow Swift, this is so interesting to me...Sorry, I have a morbid sense of curiousity....Have you found any info on line about this phenomena? I would really like to learn more about it....
I am sorry you are having this unique manifestation of the disease....What can they do about it?

 

[sassteve2000]

So sorry to hear you have this! Metastatic Crohns is a real pain in the ass. For the skin problems, try Alavert -Loratadine Orally Disintegrating Tablets. They are the only thing I have found that stops the itching, none of the doctor's creams or pills work. It's over the counter and can be taken with most meds.

I just got out of surgery for a bladder mass removal. Turns out it was an inflammation caused by crohns. Metastatic Crohns effects the liver, bones, lungs, skin, and bladder. So, don't take any weird pain for granted and have it checked out.

Hope this helps some!

 

[shamrock15]

Never heard of metastatic crohn's before. Sorry to hear you have it, but thanks for posting. Do you take any maintenance medications?

 

[sassteve2000]

Unfortunately, there aren't any drugs for it. About all you can take is prednisone and it has too many side effects. I've started using natural products to help maintain it, but that's about all you can do.

I use the nutribullet anti-inflammatory recipes, use turmeric, ginger, and a little cayenne pepper. I cook more with oregano leaves, for its anti-inflammatory properties, and use four drops of oil of oregano in water or under the tongue to help on bad days.

I've just started this regiment after my surgery, so I'll keep you informed on how it works. So far, it seems to be working!

 

[irishgal]

I also have this metastatic manifestation. Not good at all, and super rare. Like one in five million. My doc joked I won the Crohn's lottery. Worst...lottery...ever. When I asked the treatment or for studies being done anywhere in the world, he laughed and said I couldn't find 10 people in the US with this. Looks like this forum has at least two others! It's making me feel slightly better.

Right now, I'm in complete remission for the first time in 25 years with the AMAT therapy. Dr. Chamberlin is amazing. I'm MAP positive and it took about two months for all the Crohn's (including the metastatic stuff) to melt away once I started the therapy. They told me that the treatment for the metastatic presentation is the same as it is for regular Crohn's. When Remicade failed in less than a year, I was out of options. Thanking my lucky stars AMAT worked!

For anyone out there with metastatic Crohn's, I truly feel your pain. So glad I'm not completely alone.

 

[Crohnzie Girl]

I also have this metastatic manifestation. Not good at all, and super rare. Like one in five million. My doc joked I won the Crohn's lottery. Worst...lottery...ever. When I asked the treatment or for studies being done anywhere in the world, he laughed and said I couldn't find 10 people in the US with this. Looks like this forum has at least two others! It's making me feel slightly better.

Right now, I'm in complete remission for the first time in 25 years with the AMAT therapy. Dr. Chamberlin is amazing. I'm MAP positive and it took about two months for all the Crohn's (including the metastatic stuff) to melt away once I started the therapy. They told me that the treatment for the metastatic presentation is the same as it is for regular Crohn's. When Remicade failed in less than a year, I was out of options. Thanking my lucky stars AMAT worked!

For anyone out there with metastatic Crohn's, I truly feel your pain. So glad I'm not completely alone.

I just wanna say I think it's funny your Dr put it as you won the Crohn's lottery. My Dr told me if someone was driving down a country Rd I'm the albino zebra roaming around. :shifty-t: lol. How odd are we? Lol. Glad to know you too are in remission. :thumright:

 

[sassteve2000]

Well it's been a couple of years after I had to have a foot of colon removed and two holes patched in my bladder, but I'm doing well. I've been on Humira for the past few years and it seems to be working!

It took me over a year for my colon to figure out how to process with a foot less, but it's back to working properly! All I've figured out is, you need to eat whatever your body can tolerate. Anything healthy seems to tick off my crohns, so I eat a lot of rice, beans, and chicken! For me, a half cup of pistachios at night works for me! Don't know why, because nuts aren't good for people with crohns.

I hope all of you are hanging in there! I know it's tough, but hopefully you can find something that works well for you!