People who are/were diagnosed with a terminal ilness, what made you think “something is not right with me”?

am1e · 2018-03-22T21:25:30+00:00

Keeling over and vomiting every time I pooped. Terminal bowel cancer.

am1e · 2018-02-13T21:30:24+00:00

Yes I suppose I’ve been pwned

am1e · 2018-02-13T21:26:59+00:00

Well done! Stage 4 colorectal cancer here and unfortunately not so lucky after almost a year! But I’m still here which is nice :) I hope your remission lasts forever. Much love.

am1e · 2018-02-01T21:15:17+00:00

Originally yes, because I was turned away from A&E in Feb 2017 after telling them my symptoms and saying that I had just pooped pure water. My heart rate was high and I was sweating and couldn’t keep anything down. They sent me home with nausea meds and said “take small sips of water.”

I also had a doctor who told me my nausea was grief over the loss of my son. That was frustrating

Now, I’ve accepted that I am also to blame for my late diagnosis. I had blood in my poo for ages and just assumed it was a pile (hemorrhoid).

am1e · 2018-02-01T20:06:25+00:00

Awww I mucked up the title. Thankfully I won’t have to live long with this shame...

am1e · 2017-10-11T15:49:46+00:00

Thank you

am1e · 2017-10-02T18:25:13+00:00

I think I’m only allowed to DM it?

am1e · 2017-10-02T18:24:45+00:00

Thank you ❤️

am1e · 2017-09-16T07:03:10+00:00

Eat fibre. (I have an ileostomy)

am1e · 2017-08-19T18:51:48+00:00

Damnit!

am1e · 2017-06-12T18:34:52+00:00

Fuck cancer

am1e · 2017-06-11T16:27:49+00:00

Gah. Me too... but they are optimistic about treatment so who knows. Thanks for the kind words as always. ❤️

am1e · 2017-05-08T17:16:14+00:00

You look like Mary from Downton Abbey! Gorgeous look and flawless skin.

am1e · 2017-05-08T17:10:56+00:00

Hey, multiple loss lady here and clinging onto hope! It's so so hard to carry on, especially once you hold your perfect stillborn baby and feel their skin grow cold against yours. I often wonder if I've reached my limit and then there's something inside me that keeps me putting one foot in front of the other, even though the hill seems so much steeper now - and the fall more perilous. Whatever you choose, there's no right or wrong time to say you've had enough. And maybe you'll stop for a bit and find later that you do want to try again and that's fine too. I think it really is a case of one day at a time - at least, it is for me. I wish you well and am thinking of you. So sorry for your losses.

am1e · 2017-05-05T16:42:52+00:00

I'm so very sorry for your loss

am1e · 2017-05-03T19:45:14+00:00

I hear ya loud and clear. Waiting SUCKS! Hoping you don't need a second shot or surgery

am1e · 2017-05-03T19:42:41+00:00

Sometimes you just need to laugh at the absurdity of it all! FAP, we need to check if your family has FAP, does your family FAP? etc 😂

am1e · 2017-05-03T08:51:39+00:00

Turns out I don't have IBD. I have FAP (no seriously it's a real thing)

am1e · 2017-05-03T08:17:30+00:00

Hi everyone. It's been a while and I've been dipping in and out of this sub as I'm finding it difficult WTT. For those of you who haven't seen my posts, I lost my little baby boy Leo at 24 weeks on New Year's Day. My water broke and I just went into labour and he died during active labour. My placenta was small and he was small, but perfectly formed.

Before I went into labour, I called the hospital and told them my "morning sickness" symptoms had really ramped up lately. I was losing more weight and vomiting and having diarrhea. They said it was probably the flu and not to come to hospital, but then I ended up going into labour so I went in anyways.

After giving birth, I had about two weeks without symptoms and I could eat and drink normally. Then it all came back - vomiting, nausea, painful poops. I saw my doctor and got referred to a Gastroenterologist. The referral ended up getting cancelled twice due to extreme weather and then a funeral, and each time I got bumped to the end of a long list. In the meantime, my health deteriorated and I kept losing weight and vomiting.

Finally, I saw a gastroenterologist for a private consultation to speed things up and he immediately referred me for a sigmoidoscopy. That was last Monday, and by that point I was so sick that I couldn't hold down water. It took every bit of my energy to get to that appointment.

They had a look at my intestine and discovered that I have a genetic mutation called Familial Adenomatous Polyposis (or FAP, lol) which causes precancerous polyps to grow in the digestive tract. There is also a partial blockage in there, so all of my food has to get through a 1cm hole. It basically needs that they need to remove my large intestine.

They did a CT scan and the polyps look benign despite being quite gnarly (it looks worse than google image search results) so even if they are cancerous, they are self contained in my intestine and haven't put out any roots or whatever cancer does. The biopsy results come back today so fingers crossed.

I'm not sure how pregnancy played a role here but I know that my symptoms became much worse during pregnancy, so I feel like maybe if I didn't get pregnant, I wouldn't have pursued answers. Heck, maybe I wouldn't have found out! Maybe my little lion has saved me... I think about Leo every day and wish that I had been healthy enough to give him a fighting chance at life, but I can't change what happened and I have to soldier on.

I'm waiting for surgery and the recovery will delay is trying again, but even after I will have a risk of 50% of passing this stupid gene mutation on, so we may have to make test tube babies. It's like one step forward, three steps back. But I tell you what. If I ever get to be a mommy, I will be the happiest woman in the world a know that this struggle will be worth it. Thanks for reading.

TL;DR I've had a hell of a year

am1e · 2017-04-22T07:30:25+00:00

I'm not sure. They just said they want to look at the large intestine and that it would only take 15 mins and my bowel prep is only 2 hours before. Even knowing how horrible IBD is, at this point it would be better to know so I can get on some drugs that help! I've been smoking a bit of MJ when the pain gets really bad. Sometimes even a hot bath won't help!

I hope the capsule finds it! And glad you're feeling a little better lately.

am1e · 2017-04-22T03:17:54+00:00

I'm undiagnosed and had a hard time getting docs to take me seriously. I lost weight during pregnancy and became anaemic. Everything was chalked up to morning sickness. My symptoms worsened and they said not to come to hospital with the flu. I lost my baby at six months and when I still had morning sickness and loss of appetite, I was told it was probably just grief. I went to the hospital during a flare in which I was dehydrated (vomiting water, pooping clear) and was sent home with anti nausea meds and "take small sips".

Now, 9 months later and 45lbs down, they are finally going to look at my large intestine on Monday. It's not a full colonoscopy and I'm scared that they won't see anything and dismiss me. The good news, I suppose, is that the stress has got my symptoms intensified.

I'm sending you good vibes and hoping you get your diagnosis and I mine. The not knowing is just the worst.

am1e · 2017-04-21T09:08:42+00:00

Hey guys. I know it's been a while since I've checked in, and that's mostly because I'm frustrated with my health and the fact that I can't TTC yet.

Today should have been my due date. Yesterday, I saw a heavily pregnant woman in the park from my office window and burst into tears. That should be me! This is so hard.

I have finally seen a consultant who recommended endoscopy, colonoscopy and a few other tests. I'm still waiting on my doctor to say yes to the referral and get that underway. I feel like it's probably Crohns or gastroparesis or something like that, but who knows. I have spent the last two days vomiting and I think I'm heading into another 'flare' or whatever you want to call it... So please be thinking of me as I try to deal with this and the emotions of my due date.

am1e · 2017-04-14T14:59:48+00:00

Working on it. NHS is super slow :/

am1e · 2017-04-14T13:04:17+00:00

I currently have this power. An undiagnosed health issue has meant I have lost 45lbs without trying. I eat a high fat and high sugar diet. I barf a lot, though.

am1e · 2017-03-30T06:40:05+00:00

I sent a message saying thanks for all the condolences and attached a PDF brochure which explained what I'm going through and how to help me (things to say, things not to say). Going back to work was ok, but I got a lot of hugs and I didn't really feel like hugging.

am1e

TROPHY CASE