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Potential IBD

(6 Posts)
leostar1994 Wed 20-Nov-19 18:19:50

For the last six weeks I have had an uncomfortable pressure in my stomach. It feels gassy and pushes up into the bottom of my rib cage. It doesn't matter what I eat, this happens. It feels dull and aches and sometimes in the evenings it feels like someone is tying knots in my stomach. The pain can reverberate up into my rib cage and it cramps into my back. I have had diarrhoea pretty much every day too - morning and evening. I notice that everything hurts more in the evening.

I had my first blood test and it showed CRP (inflammation) levels of 72 but white blood cells were all fine.

Initially, my doctor put me on Omeprazole which is meant to stop your stomach from producing so much acid. These made me nauseous and so the doctor told me to stop taking them. This caused three days of non stop vomiting (which included bile). I couldn't keep anything down including water. The doctor asked me to do another test and my CRP level went up to 153. She advised me to go to A&E directly if I continued to be sick. Luckily I improved and didn't have to.

She wants me to have another blood test. She mentioned that my symptoms are pointing to IBD and says it can't be IBS because the inflammation is too high. My vitamin levels are all fine.

I'm so fed up. My mood is low because I feel scared to go out anywhere in case I get diarrhoea or faint because my energy levels are low due to not being able to eat much. I want my life back. I have been off work a few days a week when I have been really suffering. I feel like my work colleagues have no sympathy for me because one of them said "you'd know if you had IBD because you'd be really ill". Just because you can't see anything wrong doesn't mean I'm not going through something. I see them make eye contact sometimes when they ask me about my appointments.

Has anyone got experience of IBD that they can share or is anyone on a similar "diagnosis journey"?

FredAndChips Sun 24-Nov-19 18:25:41

Came across your post cause i was looking for some support. I've just been diagnosed with Crohns disease and i have no idea how to deal with it.
I share some symptoms with you. Constant diarrhoea, pain under the ribcage, gorrific heartburn etc. My CRP levels were 1600 when i was first tested. Been for numerous tests and such since and was diagnosed with Crohns in october.
What your collegue said about IBD is bulls**t. Everyones IBD is different and everyone copes differently. I've not missed any work so far, but thats because i have an incredibly supportive team and access to the toilet whenever i need it. I'd deffo suggest speaking ur line manager about their attitude, and HR if necessary. Not all disabilities are obvious.
Hopefully your not waiting too long for your next appointment.
If theres anything specific u want answers to just ask, i'll try and help where i can with what i've been through so far though it is kind of new to me too.
Sending hugs aswell. Sometimes its just nice to know you're not alone

Meowandchoppychops Fri 06-Dec-19 22:47:53

Hello to both of you. I was diagnosed with ulcerative colitis (another charming IBD) back in 2013 after a persistent flare up left me unable to manage it anymore and my GP was fantastic, she pretty much diagnosed it straight away but referred me to get it confirmed and to get my manager by a consultant.
My symptoms included chronic abdominal pain, sometimes so sharp and twisting it would leave me bent over double in pain struggling to breathe, I lost tons of weight (I looked like a sack on bones by the time I saw my GP) felt nauseous most of the time so couldn't face eating, and when I did eat I would be so bloated I felt like I needed to be popped. I bled and passed mucus and it really, really stank when I had a poo, to the point I used to dread going out but when you go 20 or so times a day (feeling like I constantly had the urge to go but usually just passed mucus/blood, think it's called tresmus) it was hard to avoid. I even had to throw out quite a few pairs of knickers it got that bad. I had acne and greasy skin which I never had even as a teen and was very lethargic despite sleeping 10 -12 hours a night.
First thing I found that really helped was to temporarily reduce my fibre which eased the cramp/pain afterwards so I could manage to eat. People have different trigger foods. Oddly I felt best after eating a McDonalds. After the cause of my stress (horrid jobs, divorcing parents, mum having a breakdown, and my dad using me as his councillor, 2 house moves) ended, also I was finally diagnosed and put on medication called mesalazine it started to settle but I still had to avoid certain foods like cows milk and very fibrous veg like broccoli and cauliflower (most people struggle to digest the A1 protein found in milk - but goats milk and jersey milk is free from it) has really helped) also had to avoid too much pasta with cheese 😢.
The biggest change I have made was drinking live Kefir everyday and cutting out sugar (well a lot of it). The supermarket kefir is a good start but it isn't alive (fermenting products are not shop friendly).
I found a IBD forum and lots of people said Kefir helped. I tried making it myself but i wasn't very good at looking after it so I have a subscription with chuckling goat. Since 2013 I have only had a few minor flare ups and they have usually been self inflicted (poor high sugar diet, too much alcohol, stress etc).
Stress was definitely my trigger as is sugar but now I can eat what I want.
I hope you get a diagnosis soon it's really miserable. I found since getting diagnosed here are actually quite a lot of people suffering with IBD. A lot of the research into gut microbiome and autoimmune diseases has only happened recently but there is already plenty to show that there is something you can do about your IBD
Some links that might be worth a read for both of you. from the trust me I'm a doctor lot from the TV. - live kefir but the founders book (link below) is worth a read if you are interested in the finer details. Something my consultant never really discussed with me when I asked if I should do anything with my diet, all I got was a blank look, and not once have I been referred to a nutritionist. hmmconfused

Shann Nix Nix Jones
The Kefir Solution: Natural Healing for IBS, Depression and Anxiety

Sadly I think a lot is trial and error and I don't think there is a quick fix, keeping a food diary might help you identify patterns or types of food that upset you.
I have since learnt (again consultant neglected to mention this one) that IBD goes through active phases and can go into remission sometimes for many years, so maybe I am just in remission but I am so sure diet and lifestyle plays a major role, as when I let one or both slip, or stop taking my medication (because hey I felt great so shouldn't need it anymore right?) my symptoms would slowly start to return within a fortnight.
Making some relatively minor tweaks with my diet, drinking kefir, cutting back on the sugar, slowly (slowly!) increasing my resistant starch in my diet (think more fruit/veg, oats, chia seeds etc) Has allowed me to reduce my medication (no longer need suppositories! Whoop whoop!) and half my oral mesalazine granules and allowed me to eat any food I like again and I am thankfully healthy (managed to grow a 8lb 9 baby no problems, with a second due in Feb)
Hugs to both of you and any questions (no matter how silly)

Ps sudocreme is great for adults too if you find constantly using toilet tissue makes you a bit sore, or washable baby wipes as reusable toilet wipes especially when wet are brilliant.

Meowandchoppychops Fri 06-Dec-19 22:58:53

Oh forgot to add one little thing. I only found out about it after I had settled down but some people use a aromatherapy spray called poo-pouri in the loo before going to help with any nasty smells.

I was lucky I started my new job mid diagnosis so they took me on knowingly but they were very supportive despite the invisibility of the disease.

I have seen people who are seriously ill (have bits of bowel removed) and thank god I was never that bad but if I felt I could have I would have taken time off but I it was a new job and I didn't trust them to support me (turned out I was right so I applied for a new job within 3 weeks). Keep your manager informed and feel free to share the finer details with your oh so charming colleague. I had a flexible sigmoidoscopy and biopsy to confirm it and had to be starved for 24 hours before I took the day off work beforehand as you can't eat and I have a very active job. You might manage if you can sit down and rest mind.
Hugs again

Gail26 Mon 09-Dec-19 01:52:40

You need to ask for a calprotectin stool sample. Calprotectin only appears in IBD so if it's positive that's a good start. Quick and painless. smile

I don't have IBD just under investigation since 2013 and they still looking!

leostar1994 Thu 02-Jan-20 22:25:11

Thanks everyone for your responses. Since I last posted, they have found out that I have Crohn's disease, affecting 11cms of my small intestine.

I'm on steroid treatment at the moment, which is helping me to feel more normal, along with immunosuppressive drugs and a special diet (low fibre).

I had been signed off work but am now feeling well enough to return on Monday.

If anyone has any questions about the diagnosis, colonoscopy and MRI scan I had, please ask and I will be happy to answer as best I can.

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