IBS/IBD sufferers...

[Captainmouse]

There is a program on bbc called click about technology, this weeks episode includes a piece about a breath testing gadget for ibs, Lactose intolerance etc, on the website and iplayer

 

[ThisIsMyDragName]

Ah great! I hope you still managed to have a lovely holiday?

Bowels are annoying.

They are THE WORST, haha! Yes, we powered on through as much as we could and had a lovely time! Bit miserable being back in typical British weather now, though!
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I second this motion! But am also incredibly grateful that what I have is even somewhat operational! It was touch and go for a while. We really do take so much for granted don’t we.

Mother DragName is a bowel cancer survivor, who went from basically nothing being wrong with her general bowel function in the slightest and it never giving her any particular bother to a big old chunk of it being removed and a permanent stoma fitted all within a few weeks of seeing blood in the toilet one day, so I hear you on that front! Amazing how much we take this shit (pun marginally intended) for granted. However, all things considered, she was one lucky lady and is in tip top condition now.

 

[peachesandcreamz]

Has anyone with Crohn’s/IBD had any issues with their lips? I’ve not flared for 12 years since surgery and over the past year I’ve had soo many issues with my lips that started when I was pregnant with my second. They start by getting itchy, then go red and inflamed. Sometimes they have loads of little bumps on and they become really swollen. Recently I’ve had two bad flare ups of it where my lips have even oozed yellow fluid 🫣 steroids bring it down but I can’t keep taking them when it just keeps coming back. Also have angular cheilitis at the minute on top of everything else. I’m not sure if it’s Crohn’s related or something else entirely.

When I flare, I always sores on my lips and ulcers in my mouth - they always say Crohns can show itself anywhere in your body!!

 

[Hello Kitty]

I have Crohn's, I've had it for over 10 years. Before diagnosis and about a year or so later it was horrific. After months of being on steroids and Pentasa, I went into remission. I've had small flare ups since and maybe 2 major ones since then but mine is very well treated and my consultant really is amazing. I am on Humira injections.

 

[Shoequeen91]

This was my original post... since then I have been tested for Coeliac, Crohns and something else... however nothing came back to confirm any of these... the above happened again today. I am becoming so frustrated that I have no clue what is causing this or what I can do to stop this happening... I am just about to start training for the Police, but feel this is going to affect my career if this is something that continues to happen ever 6mths or so... Is it likely IBS? Or could it be something else... I'm just at a loss as to what to do! Sorry to be a moany myrtle!

Don’t apologise about moaning. I had similar pain in my upper left side by my ribs. I couldn’t really keep anything down including liquid. I was told it could be my stomach acid and I was then diagnosed with diverticular disease in both my ascending and descending colon, this often gives me discomfort in my right rib and left rib.

Depending on how old you are, they don’t usually test for anything diverticular related especially if you are younger as it’s not really seen in people who are under 50 (I believe. I was 29 when diagnosed). However I have since been told that lots of people have it but they don’t realise they have. Mine was diagnosed by CT.

I was also in and out with stomach acid issues so it could also be this. Maybe gastritis if your stomach is irritated. There are simple spit tests for this, I believe. However, I had mine found by endoscopy. Really hope you get it sorted.

p.s. Also, just to add sorry I keep popping and talking about my diagnosis. I think I do so because it’s something that doesn’t seem to be spoken about a lot but a fair few of you are having the same symptoms I had when I had my first flare up.

 

[Peggy5]

Firstly Merry Christmas everyone. Not sure why I’m posting this on Christmas Day but suppose it’s better to just write it down before the madness starts!

Recently had some bloods taken and found out that my iron is low (7.4 when it shouldn’t be lower than 10-31). Now for those of you who may have seen my posts on here before you will know I have diverticular disease. I have a lot of symptoms of IDA (iron deficiency anemia) such as I’m always cold, I bruise really easily etc but I’m also aware that taking iron tablets orally is harsh on the gut and can cause constipation which I don’t want with diverticular disease. Has anyone here had low iron in line with their IBD/IBS? If so how did it get resolved?

I don’t want my GP to palm me off with iron tablets and this make me have a flare up. Am I being stupid to request they look at giving me something intravenously or iron injections (if there is such a thing - I’ll admit I need to research). I’m just sick of being ill, or as I always say “I just don’t feel right”. I’ve gone from having great health to 80+ incidences on my health record this year alone since being diagnosed with diverticular disease. It’s a nightmare! I’m young, and in all honesty as ignorant as it sounds, I don’t have time for my body to be fighting against me.

Appreciate any opinions / thoughts

Definitely ask for an alternative to standard iron tablets - there’s a “tummy friendly” version but they’ve still caused problems with my crohns. I’ve had iron infusions in the past which have worked wonders, I’m not sure what my iron level was at the time but very low. Hope you get it sorted! X

 

[Blahblah93]

Hope no one minds me dropping in on this!

So I was referred to a lower GI doctor on the NHS by my GP after I kept going to the doctors with stomach complaints and episodes of going to the loo a LOT! (At its worst, I went 36 times in a 24 hour period). This has happened 3 times at that amount in the past year. Awful tummy pain, extremely tender to press on stomach, violent cramps and a constant gnawing pain griping my whole abdomen area. Handful of occasions I’ve had lots of bright red blood too, like, lots!

Anyway, I have my first (telephone) appointment with this GI doctor which lasted 1 minute at 56 seconds. He wasn’t interested, just gave it all “yep yep ok yep ok I’ll do blood and stool tests”. So I had the tests and he called me last night with the results and that call lasted 2 minutes and 13 seconds; “results all fine, sounds like IBS, I’ll refer you to a dietician”. And that was that. Off his list. After 2 phone calls. He didn’t even want to physically see me to examine me when I explained how tender my tummy area is. Absolute bloody waste of my time.

What amazes me is that he also does private work. So I bet he’d show me a lot more interest if I was paying £220 consultation fee to get in front of him!!

Im just so fed up with this now. I cannot find a trigger for these pains and upset stomach/blood and I’ve just been what feels like abandoned by doctors.

Unfortunately this story is so common with IBD. I know it puts you in a shit position but you've got to turn into abit of an arsehole to get anything done. Turn up to hospital every time you're in a flare. Don't accept no. Make a huge fuss.

Unfortunately they don't tend to do shit until its too late and you're sitting on that operating table.

 

[Blahblah93]

I've mentioned before the prep gave me seizures so the procedure didn't go ahead. I didn't know you could be sedated for it though, they never said that to me. I don't know if I'm brave enough to try and go for it again. They said I'd have to stay in hospital the night before to take the prep because of what happened last time, imagine that toilet wise! Still having a lot of problems soiling which is a nightmare.

When we say sedation - they don't knock you out they just give you a drug that makes you feel abit high.

 

[MickeyMouseClubhouse]

I've got my colonoscopy tomorrow and I am terrified. Fasting starts now. Prep at 5pm and 9pm. Wish me luck.

Keep your water up, try and get a good nights sleep. In my experience the team that will do it will be really friendly and put you at ease, they'll talk to you throughout often about things other than the procedure.

 

[Blahblah93]

No bug Lovely - fine within an hour or two. No Sickness or Diarrhoea since. Been to Dr's this morning, another stool sample - talks of a possible Allergy or IBD - but he is reluctant to say or treat as unable to pin point a trigger! Got to keep a food diary.

If this keeps happening demand to have a colonoscopy. They don't do shit unless you make a fuss.

 

[maytoseptember]

Touch wood, I’ve not been constipated for quite some time, but when I have that awful dead weight in my stomach when I am constipated makes me consider a colonic!

Spoiler: Too much info

sometimes when I have gone to the toilet, I don’t feel like I have properly been/finished I guess I just need to eat more fibre and drink more water but too much fibre can make me worse!

There’s a medical term for that - incomplete evacuation. It’s a genuine thing, and actually considered a form of constipation. You can go every day but if the bowel isn’t properly emptied you can still get backed up and uncomfortable. It’s horrible.

I’ve had bowel issues all my life. Mostly related to slow transit/constipation (which I take daily medication for) but developed IBS as an adult. Eventually worked out that I needed to cut out dairy which had made a huge difference, but recently I’ve had a couple of attacks and thought “What NOW?” I thought cutting out dairy was the end of it

 

[ChampagneBox]

I suffer quite badly with IBS and am currently in the middle of the most horrendous flare up. I had to leave work yesterday as I couldn't cope with the pain, bloating and bowel movements. I currently take mebeverine as prescribed by my GP although am due to see her in a weeks time for a review as it doesn't seem to help.

Are there any fellow IBS/IBD sufferers? (I'm aware IBS and IBD are completely different, however some symptoms are very similar). How do you cope? Any tips for being able to manage the symptoms at work? Just wanting some reassurance from other people who suffer as sometimes it can feel like you're all alone! It's a difficult thing to talk to people about if they don't suffer, as often then just think "oh get on with it it's a bad belly ache!". In reality for me, it's so much more than that! My general symptoms are bloating, diarrhoea, cramps, sweating, heart racing, feeling completely fatigued. On top of that it causes the worst anxiety, obviously being anxious then doesn't help my stomach so it's a vicious circle! Following yesterday's flare up I am feeling incredibly anxious that it will happen again, I'm shakey, nervous, every grumble my stomach makes I panic. It's truly awful.

Personally, I can go months without a flare, but when I get one it completely knocks me for six! I know dairy sets me off, so I avoid that at all costs, alcohol too. I also know I'm bound to get a minor flare around my menstrual cycle. Anyone similar?

Do you eat a lot of meat? I’ve found especially pork sets me off! My symptoms are better when I eat less meat x

 

[MickeyMouseClubhouse]

Oh thanks for that.
Funnily enough it was seaside chips that set my issues off again after years of it being OK (after an IBD diagnosis ages ago). I had genuinely thought I was 'better' but obviously it is a chronic condition.
Another poster here recommended silicolgel which is another treatment you can take an hour before a meal and sort of coats the gut so food doesn't over stimulate it. I save it for times I'm not sure what will be on offer to eat and don't want to be *that* mega fussy person (though I know it there is no shame in that) and unsure of toilet situation.
A close family member has just been diagnosed with Crohn's. Hospital and GP being a bit hopeless really and have just left him to his own devices after the diagnosis.
I think he's on some medication, but no advice with diet or lifestyle. I know very little about it tbh - can a specific diet help/relieve things?

Initially you're often put on Steroids to get some inflammation down and until they get you on something more permanent. You can help by not eating certain foods.

It can take a while to get all the tests done to make sure you are fit for Immunosuppressants. They need to check that you have resistance to TB and that you're not HIV Positive or have other Viruses.

The Crohn's and Colitis UK site was my savior as there was lots to learn, and decisions to make on medication, and lifestyle changes - Crohn's and Colitis UK site

 

[MickeyMouseClubhouse]

Anyone moved from IV to SC Remsima (Infliximab)?

Interested in any side effects, or issues not staying in remission!
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If this keeps happening demand to have a colonoscopy. They don't do shit unless you make a fuss.

Deffo!

Bloods and stool tests for inflammation markers, MRI and Colonoscopy are the 4 things I'd be demanding, just get straight to the bottom (no pun intended!) of it!

 

[ruby_red]

In experience I find IBS caused a lot of anxiety which makes the condition even worse. Having some coping mechanisms doing flare ups can help. I’m careful of my dairy intake now. Never have I been diagnosed with IBS but dairy products don’t agree with me in large quantities

 

[Keet]

I've woken up to the worst flare
I think it's because I was off work yesterday so for some unknown reason I felt anxious about coming back in today. I have cramps, I'm sweating but I've got goosebumps. I keep getting waves of nausea and my stomach looks like I'm 6 months pregnant. I feel hideous.

Hope you feel better soon

 

[Mycatoliver]

So sorry I thought I had replied. Do you have an IBD nurse? I rang them and they organised a colonscopy to confirm. I then had to have surgery but it was a quick in and out job. Unfortunately they do tend to come back. You need to make sure it doesn't get infected so make sure you see someone about it ASAP.

Hello,
Thanks for replying
I got anti biotics after a phone consultation due to having covid and the gp sort of took it seriously.
It Cleared up a little, for a week or so and now unfortunately I’m very unwell and in hospital tomorrow because I should have been seen two weeks ago.
I’m in lots of pain.
Very worried
Probably surgery.
Trying to be positive but I’m struggling.
Did you get admitted and then get the op there and then?
glad it was a quick job and hope you’re doing ok now x

 

[ThisIsMyDragName]

I thought I was finally over the E. coli (as did Mr DragName) and so we had pasta in a tomato sauce with a wee bit of cheddar cheese on top for dinner. The first ‘proper’ dinner in 2 weeks. My stomach cramps started almost immediately, clearly a huge mistake! I really hope I’m not lactose intolerant forever, I properly love cheese, haha!

 

[Jelly Bean]

That’s how mine started, following a bout of food poisoning. Hope it works for you.

Thank you. I think the real problem started when I took Immodium after the food poisoning. Probably TMI but instead of all the 'poison' (diarrhoea) leaving my body it was sealed inside. Reabsorbing or whatever it does. Obviously not a scientific analysis but in my head this is what happened. My body was trying to expel the danger and I kept it in.

 

[ThisIsMyDragName]

Hello, I feel like I’m hijacking a bit but this is a thread that might actually have some helpful advice!

I have kind of ‘self-diagnosed IBS’. I’ve suffered a lot with anxiety which tends to be very physical in nature. At the risk of being really TMI, my bowel movements are rarely normal and pretty much always loose, but it goes hand in hand with my moods and anxiety levels, so I think I just wear my anxiety very physically. I try to take probiotics and I was on SSRIs (reducing off then at the moment) and I sort of have my own ‘normal’.

Anyway, I’ve been away on holiday and I’ve eaten something that’s disagreed with me (as has my husband) and we’ve both had diarrhoea since Saturday night, mine worse than his. Whilst we were on holiday I took Imodium just so I could leave the hotel. Yesterday we lived on a very light diet of toast and I don’t feel like I’m getting any better, in fact I now have more stomach cramps than I did. Every trip to the toilet is pretty unpleasant, shall we say. We’re trying to stay hydrated, I’ve had a supermarket’s own Actimel today alongside my probiotic pills. I’m starting to get hangry but I don’t fancy any more quick fire trips to the toilet than I’m already dealing with. There’s been no vomiting (which I’m grateful for as I’m emetophobic) but I feel really sick today.

I cannot stand the taste, smell or texture of bananas which of course seem to be Dr Google’s number one food stuff for people in my situation. Can anyone recommend anything (food, OTC meds, herbal remedies, interpretive dance) to help me out? I don’t want to take any more Imodium because I’d like whatever is causing me so much upset to get out of my system as quickly as possible!