IBS/IBD sufferers...

[Blahblah93]

@Blahblah93 and @Mollyoscar_ can I ask how low your iron was when you were given transfusions, if you know that is?

Mine was 2. I was extremely unwell and admitted straight away

 

[yeoooo]

This can happen if the Crohn’s is in the small bowel.

thank you for your comment two CT have shown largish lymph nodes and a lot of them - apparently not what they would expevt to see there

 

[Blahblah93]

I have crohns and severe endometriosis of the bowel I’m having a particularly rough flare up that got better for a few days and has now come back.
I noticed a few days ago that my bum is really sore, felt like it was sore from all the wiping but now it feels like I have a cut, it’s sore especially when I walk or move. I feel it there constantly..
It’s kinda itchy but feels more like a cut than a rash.
has anyone experienced this?
had severe diarrhoea and constipation for around 10 days now, fed up and feel exhausted

Are you bleeding? I had a fistula and it felt like that.

 

[lorballs]

Has anyone had a positive fit test as I am freaking out

 

[Woolmercardington]

Hi, does anyone here suffer with recurring constipation?

I have a really good diet but I seem to condition to BM triggering foods and supplements very quickly. My bowels tend to be very sluggish and are often Type 1-2.

Anyone more prone to this kind of IBS?

 

[Blahblah93]

I’ve suffered with episodes of constipation and bloat for years, I finally mention it to the GP 2 years ago and he recommended peppermint capsules and I’m glad he did as the episodes have gradually become more frequent and then they do make a difference

Currently I spend most days bloated etc feeling normal is rare but last week my stomach behaved really oddly and I’m hoping someone might understand

Last Fri an area at the top of my stomach, just below my ribs began to contract last a second or 2 then stop and the frequency of repetition has varied each day

It feels really unpleasant like I’ve got an alien in there but I wouldn’t call it painful more uncomfortable, it hadn’t stopped by Tuesday so called GP and lucky me can have a phone appointment in a fortnight

It’s been a full week now and there hasn’t been a day without my alien contraction spasms things

I’m going about my day as normal but it’s concerning as I’ve no idea what’s going on

Does I sound familiar to any of you?

Have you tried Buscapan?

 

[dreamteam1]

Just thought I’d give a quick update. To recap, I posted about a month ago after years of being unable to get a coeliac diagnosis due to not being able to tolerate the camera, yet the majority of my bloods (all apart from 1 test) have been positive. I attended the doctors yesterday about a different issue, to be immediately dismissed as, in the doctors words; “I’m diagnosed coeliac, yet not following a gluten free diet” honestly I can not deal with the picking and choosing when it’s relevant to them and when it’s not. I’ve now got the ball rolling for a bone scan due to my arthritis at only 30 years old & having further tests on my pancreas.

Can I ask why you can’t go GF diet? There’s a lot of alternatives out there now, I know doctors dismissing symptoms is very frustrating so feel for you there.

 

[Steph’s]

Try and get a capsule endoscopy. It goes through your entire digestive tract.

Is this widely available on the NHS? They have prescribed Alverine citrate capsules but pain still frequent

 

[Synthetic]

I've not taken the vaccine at all.

I had Covid in July as did 4/5 family members, luckily it was in-between infusions. I was the worst affected unsurprisingly and was in bed for a week. Although the other 2 were in bed but for a shorter time and 1 had hardly any symptoms. I would say it was the equivalent of having flu.....real flu, I had it when I was 18 actually on my 18th Birthday so the memories are etched!

Now the 1/5 straggler has tested positive this morning on a PCR and my infusion is next week. I'll have to postpone by a week as it will be within the 10 days. I'm not worried though as after 35ish infusions I'm in remission and my body can withstand a little alteration here and there.

My infusion centre let's me jiggle appointments as needs be on occasion, ie a week early or a week late if needs be for holiday etc they are really good

Hope they feel better soon xx

 

[MickeyMouseClubhouse]

Have any of you had your invite for a booster covid vaccine? Are you going to take it?
I gor a text this week and it mentioned the increased risk of complications but also said 'you are now due your booster as it is over six months since your second dose'. I've booked in for the start of October as it was the first appointment. Hope everyone has a good weekend x

I had a call from my GP wanting to book me in for next week, but as I currently have Covid I’ve gotta wait 28 days

 

[ThisIsMyDragName]

How are you doing???
---

I don’t understand how modern medicine can be so advanced and we still gotta drink gallons of powdery citrus sweat.

Hey! You’re so lovely to remember me and my dodgy guts and check in. I believe I am fully back to ‘normal’. My normal was never properly normal but no more stomach cramps and I can eat cheese again! I am still a bit hesitant around food and not quite ready for a slap up meal out yet. Never want to go through that ever again, haha! How are you?

 

[Proof8]

not feeling great today - ! I’ve tried all different diets to ease bowel symptoms - but something always triggers it - it could be something I’ve eaten multiple times before - I’m just at my wits end now with what to eat! Some days I’m terrified to eat if at work or out in case it decides it’s going to cause diarrhoea/sickness. Feeling so fed up with it all!

Do you have ibs or ibd? If ibs check out monash university fodmap app.

 

[Shoequeen91]

I've had about 20 endscopies over the years. Take all the sedation.

Gosh, that’s a lot! Really hope you are okay (or better at least) Thank you. I will speak to my consultant and request the sedation x

 

[Laurst]

I have a Kefir everyday

A yoghurt? Any particular brands, and does it work for you?

 

[ThisIsMyDragName]

I don't blame your mother not wanting anymore after that. I think I had seizures because it drained me so much. I woke up hooked up to a banana bag.

Me either. It’s a bit scary because it’s a really good way to check her cancer hasn’t returned but the colonoscopy she did make it to was clear and they do blood test her for a cancer marker annually (I think) so can only cross fingers and toes that is sufficient!
Yikes, that must have been really scary to wake up like that!

 

[Shoequeen91]

Wondering if anyone can help me. For the last maybe two weeks, I’ve had awful indigestion pain not only after I eat but all the time, this pain (more of a pressure and tenderness than a pain) then radiates down to my lower left and then to my lower right. It also radiates to my left boob and sometimes my back. I went to my GP and she sent me to to the ER just to rule out anything cardiac related, had an ECG and all was fine, bloods also I’m told were perfect. So back to GP a few days ago to give a stool sample and have it tested for H Pylori, results I haven’t got yet but I don’t think it’s that as I’m not vomiting nor is the pain *that* bad, it’s just, there, always, and more like I need someone to pop me I feel that full and bloated all. the. time. Google has me freaked out that it could be anything from MS to cancer and I just can’t Google anymore. But I do know I just don’t feel right. Can indigestion be this persistent and last this long? My stools are relatively normal looking too, maybe a bit stickier looking than normal (gross) but nothing wild looking. Anyone experience anything like this?

Ask if you can get a CT scan to check for diverticular disease.

I had a couple of similar symptoms to this in that my stomach was tender on the left (upper usually but can also be lower left) and I had bad acid (which is originally what the doctor in A&E told me I need to be tested for). I also felt like I was having a heart attack as the burning in my chest from my acid was horrible.
Usually when it’s the left side it’s diverticular.

I always feel bloated when I “flare up” and sometimes tight underneath my boobs and it can be a struggle to take full deep breaths.

Hope this helps as something else you may be able to flag with your doctor x

 

[Shoequeen91]

Mine was really low, and I was B12 anemic at the same time when diagnosed. Infusion of Iron was needed to sort me out, much simpler than tablets!

I’m really hoping they take into consideration my diverticulitis stuff because I really fear having a flare up. They’re horrific.

I’m not sure if 7 will be considered low enough but it’s honestly getting me down. I just want it sorted.

 

[MickeyMouseClubhouse]

I tested positive in July Andrade to delay my infliximab by a few weeks and keepof methotrexate for the same. It did kick off my symptoms a bit but luckily avoided a full blown flare up. Stay well x
in other news I’m off to see the surgeon this afternoon to see if he’s going to open me up for the 3rd time

Thanks!
I’m hoping I’ll keep away from a flare up. This weeks food delivery has all my ‘safe’ foods in it!

oh wow, I hope that all goes well and the right decision for you is made

 

[Synthetic]

Have any of you had your invite for a booster covid vaccine? Are you going to take it?
I gor a text this week and it mentioned the increased risk of complications but also said 'you are now due your booster as it is over six months since your second dose'. I've booked in for the start of October as it was the first appointment. Hope everyone has a good weekend x

 

[Olive16]

I've got a Dr's Appointment next week, so am going to speak with her about it and hope she investigates! I wonder if it could be a food allergy, as my symptoms are almost like my body is going into some sort of shock!? I'm keeping a food diary also for her to view, although I'm aware she will probably want more than a weeks worth of foods...

Has anyone chose to go Gluten and Lactose Free without Drs/Dietician? I'm seriously debating it... I just hate to self diagnose/do things without guidance!