INFLAMMATORY BOWEL DISEASE & ANKYLOSING SPONDYLITIS | MY STORY

In this video I share my story that lead to me being diagnosed with Inflammatory Bowel Disease (IBD). This is alongside my current diagnosis of Ankylosing Spondylitis (AS).
HERE IS THE LINK: • NEW DIAGNOSIS? MEDICAT...
I am NOT a qualified health professional, I am just a patient sharing my experience of living with the disease in attempt to help others.
AS is an inflammatory auto-immune disease that primarily attacks the spine, but also some other parts of the body. I have been diagnosed with AS for about 2 and a half years now. During that time I think I have learnt to cope fairly well with my diagnosis and manage aspects of the disease that affect me on a daily basis.
So on the 3rd March 2020 I was diagnosed with Inflammatory Bowel Disease (IBD) in conjunction with my current diagnosis of AS. This sometimes happens to people who already have one auto-immune disease - it makes you more at risk of developing another due to the higher levels in inflammation in the body and the way the immune system is functioning.
So you’re probably wondering what symptoms / investigations I had and how I came to be diagnosed. I’ve definitely experienced symptoms of IBD for years - I remember having them before I even developed symptoms of AS. I remember it getting particularly bad during my first year of university when I was 19 - so 8 years ago! When I went to the doctor about these symptoms I was kind of dismissed and was just told that I had Irritable Bowel Syndrome (IBS) and that was what was causing the symptoms. This went obviously went on for years as I have only just been diagnosed with IBD.
The main symptom I had were bouts of frequent diarrhoea and blood in my poo. Obviously, finding quite a lot of blood in your poo can be quite unnerving (and make you wonder if you’re dying lol) but after being dismissed by doctors numerous times and told it was probably just haemorrhoids, I kind of accepted this and thought it must be more normal than I thought. This all happened back in the UK, a long time before I went travelling. I also began to vomit quite easily, often I would eat and then get stomach ache and then be sick. I just assumed I had eaten something dodgy or had a bug as it didn’t happen too frequently. Often this would be around the same time I got diarrhoea and blood. This was probably about 6 or 7 years ago.
So about 4 or 5 years ago I also began experiencing pain in my lower right hand side of my back, in my sacroiliac joint on that side. I also began to have trouble sleeping due to my back getting really stiff and painful as I lay still at night. These symptoms led me to being diagnosed with AS. I will link below a video where I explain my full AS diagnosis story.
HERE IS THE LINK: • ANKYLOSING SPONDYLITIS...
Whilst traveling Asia and a lot of Australia, I wasn’t settled for long in any place. So it wasn’t until I arrived in Sydney and moved into a flat, that I really began to get to know a GP. During an appointment, I mentioned about the blood in my poo. She said she would write me a referral to the hospital to be seen by a gastroenterologist. I remember being surprised at this because no GP in the UK had seemed particularly concerned. So I saw a gastroenterologist under the public health system here. After my initial appointment where he took a case history and asked about my symptoms, he said that the best thing for me to do would be to get a colonoscopy.
So I was referred for the colonoscopy and went for the procedure. During the follow up, the Consultant basically told me that I had a bit of information in my bowel, but not enough to concern him or to say I had IBD at the time of the colonoscopy. He said that he wasn’t sure what was causing the blood and it could be haemorrhoids or inflammation, but neither were there at the time of the procedure. And he asked to review me in a years time.
So it wasn’t until I saw a rheumatologist recently, and he told me that based on the way my disease was presenting, specifically the asymmetric pattern, as well as all the symptoms and investigations I had had previously into IBD, he was certain that I did have co-morbid IBD and had experienced inflammation in my bowel, even if it wasn’t all there at the time of the colonoscopy. He told me that he had never seen a patient with asymmetric AS, who did not also have co-morbid IBD.
I will link a paper below which goes into a lot more detail of these different classifications of AS.
HERE IS THE LINK: www.ncbi.nlm.nih.gov/pmc/arti...
If you would like to keep up do date with me on social media, then here’s my instagram!
My instagram: @thisizzthelife
Thanks you so much for watching / reading!
So much love!!
Izzy xxxxxxxxx

[@hatlover1313]

I also have both diseases. I’m 25 (female) and find it comforting to see your video.

[@selvamgovender7454]

Lllll

[@ronniewatkins]

I love how you stay so upbeat and positive no matter what. I only have AS, but I know how bad it is and you are fighting IBD too. You are a tough cookie, Miss Izzy!! Stay healthy!!!

[@ThisIzzTheLife]

Thank you so much! 😘♥️ that’s so kind of you! Take care Ronnie! X

[@madisonpeterson1651]

I have both of these conditions as well. Reassuring that I am not the only one!

[@DavonraymondX]

I was diagnosed with ankylosing spondylitis at 24 , 4 years ago and so much of your journey sounds relatable. The embarrassment, the blood when you wipe, the million doctor visits , the reality of AS flare ups can abruptly stop life that’s for certain! I hope all who suffer , experience less daily stress from AS!

[@sozza.]

I got diagnosed with crohns at 17 and the way you describe your diagnosis for IBD saddens me, bc the moment i got symptoms we went to the doctor. they actually checked for haemorrhoids and ruled it out, they did blood tests, stool samples, etc. i can’t remember if the results showed anything or not but regardless they sent me for a colonoscopy and endoscopy to get answers. we went privately specifically for that procedure to get answers faster and the doctor was able to give me the diagnosis within hours. i’m almost 19 and have had multiple other colonoscopies and unfortunately have gone through so many different meds to no result, hopefully the new one i’ve started will work this time - i even had bad symptoms but a clear colonoscopy at one point!

[@carolinesmith7630]

I have AS too and am feeling so unwell with abdominal pain that I believe I might have IBD too. You're keeping so positive which is great, thanks for sharing :)

[@walkinglibrarian]

Ahh the light in a dark room when a doctor knows what he is talking about

[@splashingoreos3365]

I’ve been diagnosed with AS also, I was prescribed HUMIRA, and it works wonders. But I’m starting to get symptoms of IBS and I’m concerned I might have the same double diagnosis you have. For all the AS Warriors out there keep fighting ! I know it’s super hard dealing with this pain! ❤ #STAY STRONG

[@GLITCH-hl5iz]

I have both ankylosing spondylitis and crohns disease multiple surgerys multiple different biologics steroids the job lot stay strong i know your pain 😊

[@MsSturbuck]

The way to talk about your experience makes me SO much better.What a positive person you are, pure joy even talking about serious stuff💚💚 I am so anxious reading about side efects of the meds 😖 You were so lucky you found amazing specialist I hope sulfosalazine will help you for good 🙂 Actually I started wondering if I may have IBD too...Did you have digestive problems unrelated to types of food you were eating or just after specific ones ?

[@ThisIzzTheLife]

Aw I’m so so glad! Which medication are you on? I will film a video on how I’ve found the sulfasalazine really soon so hopefully that will be helpful! ♥️ I didn’t notice problems related to specific foods to be honest but I know some people can. Maybe worth checking if you already have an auto-immune condition? Sending so much love!! Xxx

[@MsSturbuck]

@@ThisIzzTheLife I take Kostarox (Etoricoxibum) but my doctor mentioned she will prescribe sulfalazine after she sees my MRI joints results. The thing is because of coronavirus all vistits are cancelled so I guess I'll have to wait 😒 I wish we could know the reason why we got sick

[@kaymarpee]

Same presentation of symptoms for me! TY for making these videos :) I have basically the same diagnosis, AS on the right side for years until it progressed to both. I was on meloxicam (nsaid) for a while but it inflames my gut and makes IBD symptoms worse which causes flare-ups so thats a cycle I try to avoid. I just had inflammation in my ribs for the first time 12 years into this, not fun!!!! I gave up on doctors after a few years because they tend to push biologics here in the U.S. I had the same experience with gastroenterologists, telling me I had hemorrhoids without checking. I didn't end up going through with a colonoscopy when it was finally offered because I was nervous about the procedure, especially with the lackluster care from my doctors. Afterall, if results were positive for IBD, what would be the solution? Other than diet adjustments, they said they would put me on biologics! Not a lot of advancement on the Western medicine side of things for AS in my experience. I've had much better healing progressions through stress-reduction (biggest change), cranio-sacral practitioners, posture alignment (through really knowledgable yoga teachers), acupuncture and DIET changes. Lately I've been trying intermittent fasting to give my body rest periods and that seems to help with the IBD and ultimately I'd love to try out week-long or longer water fasts because of anecdotal evidence that it can pause inflammatory conditions and promote healing. I tried Low-dose Naltrexone which worked for about 9 months before pain returned, but that 9 months was AWESOME! Maritime Pine Bark is a supplement I've been taking that has seemed to reduce my inflammation by a lot.

[@mishca5116]

glad your Sydney doctor saw the blood as a red flag and referred you for a scope! That' what every one should have done - it's to rule out cancer etc.

[@NaomiTAY86]

What did the biopsy show? Do you have Ulcerative Colitis or Crohns? I have Crohn’s and now dx correctly with AS. Severe pain in my neck, low back and SI joints. It’s been a journey but I have a great Dr that is treating both conditions.

[@callrathna]

I think there is a connection between the both. One condition has manifested from the other. Basically inflammation gone out of control a bit.

[@WwJd2tmthy1]

I finally got diagnosed with both AS and ulcerative colitis. I just want to feel good again. Is that gonna be possible. I’ve change my whole eating lifestyle and still suffer bowl problems and can even hardly do light house work cuz of AS. At least an answer after all these years

[@TheAnonymousEducator]

Probably its ulcerative colitis. Also NSAID can cause ulceration in intestine or can aggravate ibd. Hope your current medication help.

[@ThisIzzTheLife]

Thank you for your comment! What makes you think it’s ulcerative colitis? Aw that’s a really important point - it will be interesting to see how my new medication changes things. All the best! 🥰 xx

[@TheAnonymousEducator]

@@ThisIzzTheLife crohns usually affects small intestine and sometimes small plus large. While ulcerative colitis usually affects large intestine. You said blood in poo, if blood is visible then large intestine is affected, and so chances are more that it is ulcerative colitis.

[@walkinglibrarian]

Yes disease can sometimes be determined by location but the main determination is how it shows up. Crohn's usually shows up in patches and all the layers of intestines while UC is only the mucosal lining covering the entire colon

[@jsny7098]

@@TheAnonymousEducator I have Crohn’s in small intestine and still see blood in stool likely from rectal or perianal Crohn’s activity. So blood does not always mean UC.

[@bssandhu-jd7gg]

I have also anklosing spondylitis

[@walkinglibrarian]

I just came from another video of someone who experienced gaslighting in the UK. Why didn't the GP send you straight to a GI? Thank you for sharing your story

[@tenminutetokyo2643]

Many GI docs don't know how to deal with it and are too lazy to do any research. Too many patients to bill, you know.

[@slavaukraini698]

Hey Izzy, I am now 5 years into the combination ibd and as. Its been an insane ride mentally and fysically. In one way i live fitter than ever before of all the sport and restraint from alcohol drugs in another way i feel sometimes like i am 70 years old. Because of the pain i can be à difficult person for People around me. It is Nice to see your posivity. What medication do you take? I take nsaids and the mesalazine. Greetings from Belgium

[@unisonproductions123]

Yeah with you on the pain making you difficult! Cannabis helps with that, makes me less difficult...

[@haleydoe2279]

I have the same diagnoses and I think it's misdiagnosed Crohns disease. 3 people in my family have Crohns

[@MaximDL1410]

👏❤️🙏

[@chrispeters5194]

What is the name of the rheumatologist please ? Im in Sydney

[@danplugaru8187]

Is good that you made precisions...cause of your simptoms is bowel inflamation....but not SA axiale....which is with rigidity and fusion of spine....or you have hipermobility of joins......i have experience of 50 years of SA axial...i know what i say....otherwise i appreciate you openness!

[@dibaygautam2076]

Thanks for your video. Mistakes ! : Since you had AS you should have been give biological but you didn’t get one and that’s why you got IBD ! I have exactly same story amd symptoms like you: I had AS and dying my 4 months holiday in Asia I developed IBD. So far they measured calprotecting label 75 4 weeks ago and now 127 ! It is still not 250 but this results suggest I am very likely to have IBD. But no blood in my poo so far! I was in Infleximab and I was reintroduced to it again in and also taking 15 mg steroids to control the flare. This is my 6th week of Infleximab stil no sign of working and tomorrow I have 3 injection ( drip) hopefully it will make some effect . Please get biological treatment asap !

[@rdscms]

Do you recall if you took any genetically engineered recombinant vaccine (Gardasil, HPV, Hep. B, Anthrax etc) before your started experiencing digestive issues?

[@nicolelebel1158]

We get hep b from birth

[@jethrox827]

Hey as stated here already, it wouldn't be your AS meds that are hammering your bowel?

[@ThisIzzTheLife]

Hey, thanks for your comment! I think that’s unlikely though because I started experiencing symptoms of IBD prior to being diagnosed with AS and a long time before I even started taking NDAIDs! ☺️

[@jethrox827]

@@ThisIzzTheLife you are so polite ;) hows Bondi, was that you on the beach the other day being told by the police to go back to your apartments you pesky citizens

[@ThisIzzTheLife]

Haha, not me! I was very well behaved throughout lockdown and made sure to avoid the beaches when that was the advice! Thanks for your concern though 😘

[@tenminutetokyo2643]

Probably both.

[@Ajhc73]

Its so depressing if so I’m eating what i want and believe me its for the best because you’re gonna be attacked whatever you eat .. ankylosing spondylitis with inflammatory bowel disease , uveitis and spine fusion otherwise i feel healthy!!

[@johnbewick6357]

I don't understand how a colonoscopy could show symptoms of IBS. The colon is not the bowel.

[@danplugaru8187]

I told you in your previous video that is not SA.....no ankilosing spondylitis....IBD is with ulcerativ colitys.....this give pain which resembles with SA.....it requires diet ......

[@tenminutetokyo2643]

Klebsiella produces an enyzme that mimicks HLA-B27. This enzyme mimicks some human proteins in the body if you are HLA-B27+. Hence when the body makes antibodies for the Klebsiella enzyme to remove it (since it's a foreign substance), it mistakenly attacks proteins in the collagens in the joint and spine. Over time the chronic inflamation causes lesions and fusing. The solution is to starve the Klebsiella with a low-starch diet since Klebsiella produces the enzyme to break down undigested starches in the gut. You can get tested for high levels of the enzyme with a stool sample test.

[@soniachambers6460]

Interesting

[@magicalindigoadult3838]

My Dr said ankylosis is for men only