Nobody takes my illness seriously

Hi everyone,

I hope you don't mind a bit of a long ranty post, because that's what this is. I'm just so tired and frustrated.

To cut a very long story short, i was diagnosed with ulcerative colitis when i was 18 at the end of 2013, after a lifetime of stomach issues that everyone put down to 'the fact that i have anxiety'. It took two stone of weight loss, a misdiagnosed eating disorder, a threat from my GP to put me on a psychiatric unit, before i took a photo of the blood that was coming out of me 30 times a day, and showed it to my parents and GP. Only then was i taken seriously.

Fast forward to my second flare up, which started 6 months later. Again, i couldn't eat, i was on the toilet constantly, could barely walk or go to work, and yet my GI still did nothing because i didn't 'look ill' when i went to my outpatients appointment. It wasn't until i demanded a colonoscopy (which showed dreadful ulceration), that i was finally admitted to hospital again. In my GI's words; "i couldn't believe how awful your colon looked and how ill you are, considering you look so well". I was then re-diagnosed with indeterminate colitis and put on Azathioprine.

I had quite an amazing 9 month period where i was well (albeit exhausted), until some symptoms came back earlier this year. I now feel sick after each meal, i have next to no energy, have constant, sometimes agonising pain every single day, and just generally feel miserable and out of sorts. Any food i do eat (which is very little) goes straight through me, and I've lost almost a stone in August alone.

I've phoned and seen my GI multiple times, and have been told that because i have no blood, it means that my UC isn't active. He put me on IBS medication, which has done nothing. Ive taken every single anti sickness tablet available, and they've done nothing. I was found to have an extreme Vit D deficiency, and had an adverse reaction to the tablets. I also got referred to a dietician, who told me that she has no advice, because i'm a difficult case considering i have no appetite and feel sick no matter what i eat.

My GI says that i need to just live with my symptoms, but i don't know how much longer i can go on like this. I'm so, so exhausted that i can't get on with my day to day life. I'm weak with not eating, i'm in pain, i feel sick, and can't even walk up the stairs without feeling like a 90yr old woman at 21.

What's worse is that my family and boyfriend, as much as i love them, don't seem to understand the extent of how I'm feeling. My dad gets understandably annoyed that i haven't done housework, or walked the dog, or eaten, because I'm just so weak. I get made to feel guilty for these things and told that I'm lazy, as if i wouldn't give anything to take my amazing dog for a long walk in the sunshine. They all seem to think that if I'm not complaining, or if I'm laughing, that i don't still feel like crap on the inside. Not to say that my family don't try to understand, but like my GI, they seem to forget i have a chronic illness, and that if i look ok on the outside, i must be.

I'm sat here crying at my computer because I'm meant to be travelling 4 hours on the train to visit my boyfriend tomorrow, and i haven't even packed my bag because I've been leaning over a bucket for most of the day. If i manage the journey, I'm scared that i'll find it hard to keep up with him when I'm there, or that we'll spend our days revolving them around food, and me feeling sick, and the fact that i need to know where a toilet is at every given second.

I know that others have it so much worse than i do, and that i shouldn't really complain, but i'm so, so miserable... and sick of pretending that I'm not. How can we be expected to live our lives this way and just carry on as normal, when every minute is a struggle?! As always, i appreciate any advice or support so much.

I hope that you're all doing okay xx

I second getting a new GI. He's being far too dismissive and presumptuous. I had increasingly severe Crohn's colitis for 13 years without any bleeding at all. You don't have to have blood to have active IBD. And, generally speaking, a change in symptoms merits investigation.

Also, people who are healthy can't possibly understand how debilitating this disease gets. I didn't even understand it at first. But years of chronic inflammation, anaemia, undereating, malabsorption, heavy-duty meds, etc. take their toll. Your dad needs to understand you won't have the energy levels of a healthy person until you get your disease under control and can eat normally again.

Leanne Rachel, your post could have been written by me a couple years ago. And I still sometimes feel this way.

I agree with getting a second opinion. It never hurts.

So you're on azathioprine. Have your symptoms gotten worse while on it? How much do you take? Maybe it's not effective anymore and you need something else? Also azathioprine causes me to lose appetite and makes me nauseous. I take ginger for it and it helps. Have you been on mesalazine and/or enemas?

Please don't pretend anymore. Stand up for yourself. I really hope you feel better soon. By the way I got diagnosed when I was only 17 and now I'm 31. It sounds stupid saying this but I know exactly how you feel.

Most definitely get rid of your GI and find a new one. You do not need to learn to live with your symptoms. You're not being managed well at all. My guess is you have untreated inflammation which is why you feel so sick and have no appetite. When I'm flaring, cramping is my hallmark sign and means I need to add either rectal meds, prednisone or both. If I start bleeding, it means I've let the flare go too long without treatment. Smh, your doc said so much nonsense. He has no compassion, no empathy and makes me wonder why he would even choose GI as a specialty. I am so sorry you are going through this; any time I hear someone say they were being referred to psych while having UC symptoms, I get so angry. I hope you feel better soon.

Ulcerative colitis is an invisible illness, we look one hundred percent healthy on the outside, with the majority of our suffering happening within the confines of our own private bathrooms. Atleast once a month someone posts here saying that their spouse or family members don't get it, call them a complainer, hypochondriac, and belittle their uc concerns (sad, but true). You're not alone, many have had the one's that are supposed to be the most supportive, in fact be the least supportive. It's their ignorance that's the problem, not you! You can try to educate them or just choose to ignore them.

Speaking of ignorance, your doctor is a relic from the 1940's thought that all digestive issues are purely psychological in nature. I'd suggest he get busy readying the last 76 years of research and ordering diagnostics that would directly contradict him. As it'll take him/her a very long time to get up-to-date, find yourself another gastroenterologist asap.

When our symptoms get and stay worse (regardless of the signs of blood) we should have a number of diagnostic tests to findout why. Standard flare protocol is to order a stool test to rule out pathogenic causes of those symptoms (c diff being common), and order either a flexible-sigmoidoscopy or a colonoscopy with biopsies. If you have active ulcerative colitis inflammation then it will show up. Our body's inflammation levels can also be measured via a blood test (CRP) or via a stool test (fecal calprotectin) for changes in inflammation levels over time. Generally a scope is best and doesn't have false-negatives like crp or fcp can have, but scopes are more invasive.

The worst argument my husband and I ever had was over my not sharing with him how bad I felt. I'd given him no clue as to how bad my flare had gotten, then one day I passed out on the toilet. He was frightened half to death, and furious that he'd had no idea I was so sick. A lot of us try to keep smiling and soldier on, never telling our families how truly dreadful we feel, because we don't want to burden them with our constant whining. We always pay a price for it. Perhaps it would help if you kept the family a bit more in the loop on how you're really doing. There's a fine line between hiding things from them and not being a whiner.

As for your doctor, I agree that he's woefully behind the times in his knowledge of GI disease. Keep advocating for yourself for a different consultant. If he's the best in the district, then your NHS is woefully incompetent.