IBS/IBD sufferers...

[yeoooo]

How did people get the capsule? Was it offered or did you have to ask your consultant? Is it available on the NHS or private only (I’d pay if it’s private only)

I was actually seeing my consultant privately and he put me on the nhs for it as it isn’t available (at least where I am) privately

he said to me that there must be a strong case to do it (i didn’t ask why or the criteria to be honest)

they’ve seen things in my small bowel from three images so they want a closer look

for those who have had it - would you say you are able to work from home with it etc (im told I go initially to the hospital first thing then go home and come back) - just trying to plan out my day

 

[Blairr]

I’ve been having bad cramping in my stomach (left and right) and horrible pain between my boobs for a while now. I have been diagnosed with diverticular disease but my bloating is ridiculous. I’ve got an appointment for endoscopy on 16 November and I’m so unbelievably terrified. I’ve just read the leaflet that has come with my letter and I’m so torn between sedation or not.

Has anyone got any advice? Could anyone let me know what the tube is like? I don’t want to not have it but at the minute I can see myself pulling out due to worry. I’m being tested for IBD (purely precautionary) and my doctor thinks as it doesn’t look to be gallstones (USS clear but very gassy) that I could have gastritis and/or bad reflux but I’m being told the only the way they can check this is endoscopy. I’ve just tried for so long to not have anything invasive.

I see endoscopy’s a lot where I work. Definitely take both the throat spray and sedation. The sedation given is the same amount as a colonoscopy. It’s enough to relax you and you will probably not remember much of the procedure. It wears off fast though but lasts long enough to get you through it.

It’s pretty fast compared to a colonoscopy too!

 

[ChiRie]

Not read the thread but are people saying they have had the capsule to investigate? I suffer so badly but had seizures at my colonoscopy appointment maybe from the prep which was not supposed to be given with people with seizures, Been too scared to have another. Help please as it's bad, soiling myself tbh

Also bad pain

 

[yeoooo]

Not read the thread but are people saying they have had the capsule to investigate? I suffer so badly but had seizures at my colonoscopy appointment maybe from the prep which was not supposed to be given with people with seizures, Been too scared to have another. Help please as it's bad, soiling myself tbh

Also bad pain

Oh dear! That must have been v scary for you! my bowel consultant done a colonscopy and then recommended the capsule as they think the issue is the small bowel and colonoscopy doesn’t go that far. There has also been three scans showing inflammation so they have a case to go with this method.
Not sure if you’re UK or elsewhere and if you have private medical or not but first step is your primary care doctor/GP and discuss it with them or if under a consultant already then ask if you should have it done. Im not sure of pros and cons or what/ why you should have it done so cant advise any further than that

also re incontience issue - ive been recommended physio to help for lack of control but he had Said some cases require surgery but again I would def contact your doctor xx

 

[EllaEm87]

You still need to prep with the capsule. The bowel needs to be clear to get good imaging.
Re working from home, yes that would be easy enough!

 

[Hello Kitty]

Not read the thread but are people saying they have had the capsule to investigate? I suffer so badly but had seizures at my colonoscopy appointment maybe from the prep which was not supposed to be given with people with seizures, Been too scared to have another. Help please as it's bad, soiling myself tbh

Also bad pain

Wow I didn't know this. I have Crohn's and Epilepsy. Is there an alternative to the prep?

Hope you're ok.

 

[yeoooo]

You still need to prep with the capsule. The bowel needs to be clear to get good imaging.
Re working from home, yes that would be easy enough!

I have prepped for previous but no bowel prep as such (the mixture stuff). Told no solids from 8am morning before….I thought it a bit strange as im used to drinking the liquid!!

 

[ChiRie]

Wow I didn't know this. I have Crohn's and Epilepsy. Is there an alternative to the prep?

Hope you're ok.

The movieprep wasn't to be given with seizures it brought it on for me. I still have thme now

 

[hol20x]

Has anyone with IBS ever suffered from nocturnal attacks? I've been getting them randomly for the last couple of years. I get woken up by severe stomach pain and then I'm back and forth to the toilet for an hour or more. But it's only at night.

Consultant has me on the waiting list for a colonoscopy (which I really don't want) but he said if it doesn't show anything then it's just something I have to deal with.

 

[ChiRie]

Has anyone with IBS ever suffered from nocturnal attacks? I've been getting them randomly for the last couple of years. I get woken up by severe stomach pain and then I'm back and forth to the toilet for an hour or more. But it's only at night.

Consultant has me on the waiting list for a colonoscopy (which I really don't want) but he said if it doesn't show anything then it's just something I have to deal with.

MIne is IBD but yes I get it during sleep too, to the point I've soiled myself in bed and been woken. Worse sleeping on my side.

 

[ChiRie]

I've read sleeping in the fetal position is better to relieve the bloating and gas but it makes mine worse. Probably because it makes me need to break wind which I have to use the toilet for as that makes me soil myself too so I sit on the loo. Annoying when you wanna sleep so I flip to my back.

 

[Penny for them]

Has anyone with IBS ever suffered from nocturnal attacks? I've been getting them randomly for the last couple of years. I get woken up by severe stomach pain and then I'm back and forth to the toilet for an hour or more. But it's only at night.

Consultant has me on the waiting list for a colonoscopy (which I really don't want) but he said if it doesn't show anything then it's just something I have to deal with.

Hi x I have ibs ,ulcerative colitis when younger, I suffered from night attacks,and I have a peppermint pill every night before bed,I also found I was better going to bed hungry,or exercising after my tea so
Everything is
Digesting. Soda water I take to bed. If my stomach is empty the attacks don't happen as much if at all.
I have allergies to certain foods ,so I have to be rather controlled with what i eat,and I have also tried digestive enzymes too which settle the stomach and bowel. Warmth around the stomach helps also. But the main thing is the empty stomach for sure x

 

[ChiRie]

Hi x I have ibs ,ulcerative colitis when younger, I suffered from night attacks,and I have a peppermint pill every night before bed,I also found I was better going to bed hungry,or exercising after my tea so
Everything is
Digesting. Soda water I take to bed. If my stomach is empty the attacks don't happen as much if at all.
I have allergies to certain foods ,so I have to be rather controlled with what i eat,and I have also tried digestive enzymes too which settle the stomach and bowel. Warmth around the stomach helps also. But the main thing is the empty stomach for sure x

Definitely agree with that. When I worked I didn't eat breakfast or lunch or I'd be in for trouble. What does the peppermint pill do? Do you have a feeling of being full a lot? I can't eat much without getting full but just one bite can set me off. It's so strange.

 

[Penny for them]

Definitely agree with that. When I worked I didn't eat breakfast or lunch or I'd be in for trouble. What does the peppermint pill do? Do you have a feeling of being full a lot? I can't eat much without getting full but just one bite can set me off. It's so strange.

Going to bed full is my main problem,but full because the foods just not going down not because I'm eating too much. I used to eat late,now I eat earlier just because that's how life is now where as years ago with work etc it just was later. I suppose if you eat your main food midday and lighten up the early food (breakfast)and late food(tea)the balance is better,I do not go bed hungry every night but I probably should it works. Peppermint settles my stomach and de bloats me,I suppose a bit like peppermint tea in times of digestive issues. I got ulcerative colitis age 16, and it was v bad -diagnosis via colonoscopy
I still get flare ups I would say,I feel sometimes I could probably do with a check up,but I've lived with my ibs since and food sensitivities so I know what I can tolerate. Hormones also make it worse,at night too specifically mucus flare ups- also I have always leant on exercise it always helps -and fasting sometimes mornings until I'm properly hungry if I feel heavy from the night before or had a bad night x my night flare up is nauseous waking up,tummy pain,but like my bowel is asleep-I have to wait for the feeling to go but then I can't stop like you said for a good hour,then I get a hot water bottle I have to sit up to drop back off then when I wake In the morning it's just a bit more sensitive but almost gone away and I feel ok again. These mornings aare when I will definitely fast and give my stomach time to rest x till I'm starving and these days I definitely avoid allergens -sorry I've gone on so
Much 🫣

 

[Shoequeen91]

Massive massive respect to those of you on this thread who have had more than one endoscopy. They are awful. One of the worst experiences of my life (probably the worst experience). I only have throat spray in the end as they wouldn’t give me the option to have both. I just hope that this is the end of it now.

 

[Blahblah93]

Massive massive respect to those of you on this thread who have had more than one endoscopy. They are awful. One of the worst experiences of my life (probably the worst experience). I only have throat spray in the end as they wouldn’t give me the option to have both. I just hope that this is the end of it now.

Oh god. I didn't want to say too much but yeah they are horrific. It feels like some sort of medieval torture. I have to have them twice a year. Give me a colonoscopy any day.

 

[Shoequeen91]

Oh god. I didn't want to say too much but yeah they are horrific. It feels like some sort of medieval torture. I have to have them twice a year. Give me a colonoscopy any day.

You are a remarkable person.

Medieval torture really is the best way to describe it. I’m so sorry to anyone silently reading this who is about to have one. you will get through it though.

Someone really need to look at better ways to explore the throat/stomach/upper colon, the capsule aspect for example needs to be funded asap. If I ever come into a lot of money, I’ll throw money at it myself.

 

[Steph’s]

Back with another update or should I say no update.
I wrote on her about my OH and the problems he was having. Unfortunately we are no further forward. His bloods came back clear so gastroenterologist couldn’t do anything more.
massive flare up this week and back to dr. More bloods/samples required. Passing mucus/blood.
another dr appointment this afternoon.
Drained.

 

[Proof8]

Back with another update or should I say no update.
I wrote on her about my OH and the problems he was having. Unfortunately we are no further forward. His bloods came back clear so gastroenterologist couldn’t do anything more.
massive flare up this week and back to dr. More bloods/samples required. Passing mucus/blood.
another dr appointment this afternoon.
Drained.

Sorry I was trying to look back but couldn't find your original post. Has your partner had a colonoscopy or pill cam?

 

[Steph’s]

Sorry I was trying to look back but couldn't find your original post. Has your partner had a colonoscopy or pill cam?

Yes colonoscopy about 4 years ago when he had private healthcare through his old work and found nothing out of the ordinary but it has since become a lot worse.
No dr has mentioned a pill cam not sure if those are widely available on nhs here (Scotland) they have just basically said there is nothing more they can do except refer to gastroenterologist