Don't know where else to go: So I was diagnosed... - IBS Network

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Don't know where else to go

Emsky profile image
35 Replies

So I was diagnosed with ibs about 5/6 years ago, I've always had really bad stomach cramps and constipation, usually don't go to the toilet for 7-10 days then go all day for a day or two. I was put on antibiotics on 17th of April this year and I've had chronic diarrhea since, I came off the pills after two weeks of being on them, anti diarrhoea medication not working either had it for 12 weeks now and been off work as I'm going to the toilet 5-12 times a day I've lost my appetite and now barely eating I feel sick when I do eat, stool samples have been clear, bloods have been clear and now being told I need to do more bloods as I need to get tested for something else. I honestly can't keep living like this, i can't go on much longer, I'm scared about having colonoscopy as well as I have a very small bum so worried anything going in will be painful sorry for tmi but I don't know anyone else with these issues

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Emsky profile image
Emsky
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35 Replies
8goat profile image
8goat

Hi Emsky,

I'm so sorry to hear about your difficulties. It sounds so dreadful for you.

I just wanted to try to reassure you about having a colonoscopy. I don't think the size of your 'aperture' would be an issue, and if you're worried check it out with your GP or gastroenterologist. Just think how many millions of people of an enormous range of shapes and sizes have colonoscopies every year. They must have to accommodate everyone. Hey, maybe they have different sized camera thingies, because they must have to check out children from time to time...

The other thing about the procedure is that it's really really easy. Ok so you drink some slightly weird stuff and then sit on the loo for a few hours. The poo is just like water, quite amusing really, and doesn't hurt. Then when you go for the procedure you go off to sleep pleasantly and then you're awake, feeling strangely cheerful, and it's all done.

It's important to check out your innards to see if they can identify any problems. When they can't find anything it's vaguely frustrating but VERY good to know there's no 'serious' issue that has to be dealt with.

I was scared to have my recent colonoscopy but I'm very glad I had it. I thought I might have diverticula or polyps but didn't have anything wrong and now I KNOW. I have an anxiety condition and not knowing was really worrying.

I hope you can find your way clear to having the procedure, just to put your mind at rest.

I hope also that you can find some relief somehow.

Best wishes.

Emsky profile image
Emsky in reply to 8goat

Thanks, I never thought about kids being checked for it, just in the past things going in have been really painful for me so assuming the same, I'm terrified if needles and having to get bloods done again is an ordeal, I'm not bothered about drinking the stuff and going to the toile I don't feel there will be much to clear out since I'm never off the toilet as it currently is I think compared to normal it won't take long to clear me out, I've heard you're awake for it? Or are you completely knocked out? I'm really not good with needles 😭

8goat profile image
8goat in reply to Emsky

Hi Emsky,

Well I've heard you're awake for it too, and that really worried me, but the 'light' anaesthetic has put me completely out both times - not aware of ANYTHING until I woke up after the whole thing, feeling fine. You'll be wondering why you were so worried, after it's done. Good luck.

FRreedman profile image
FRreedman

Hi,

The size of your bum will make no difference to the colonoscopy, as the tube/camera they use is as wide as your small finger nail. Whatever has started your bout of diarrhoea off, was almost certainly connected to the event in April, and would appear, now, to be unrelated to the antibiotics, however that is what the tests will determine. The colonoscopy is, probably, my favourite test, because, all you remember is that dreamy feeling, when the colonoscopist gives you the results verbally, and asks to make sure you have an appointment to get your results of any biopsies taken during the procedure. Good luck, and the colonoscopy really is nothing to worry about.

Emsky profile image
Emsky in reply to FRreedman

That still seems pretty big to me🙈 one doctor seems to think the antibiotics have killed all my guts bacteria and because off the diarrhea it's not been able to replenish but the thing is I've been given nothing to try stop the diarrhea as over the counter meds aren't working

FRreedman profile image
FRreedman in reply to Emsky

Have you tried Imodium. Ask your pharmacist or GP before you try anything. TMI....................................... compare the size of your small finger nail with the size of your pooh when you were constipated or, not having diarrhoea. TMI.................

Emsky profile image
Emsky in reply to FRreedman

Took immodium for 8 weeks and no joys :(

Claire44 profile image
Claire44

Hi I'm so sorry to hear about what you are going through. I was the same as you. I had three courses of anti biotics and then bam ibs d. I am now on Entersol gel and it's firmed up my movements and slowed things down. maybe it will help you too. Good luck xx

Emsky profile image
Emsky in reply to Claire44

Docs haven't given me anything at all keep asking them to and they don't, I'd that stuff available over the counter?

Claire44 profile image
Claire44 in reply to Emsky

Hi the Entersol gel is. I have mebervine and codine on perscription and I also take a Holland and barret acidophilus probiotic. I hope you are feeling better soon xx

Hi Emsky...I feel for you! It was wide spectrum antibiotics for low level food poising that probably caused my IBS type SIBO (Small Intestinal Bacteria Overgrowth).

During my journey to diagnosis I had 'top' and 'bottom' Endoscopies and although I couldn't describe the experience as enjoyable I would say that there was only mild discomfort.

You haven't mentioned your diet? Low FODMAP might be very beneficial to your gut at the moment. I can highly recommend the Monash University program. There is a free app available for both iOS and Android with lots of supporting information. Give it a try...

Good luck!

monashfodmap.com/ibs-centra...

Emsky profile image
Emsky in reply to

I dont exactly have the best diet, but I don't think it's the issue, I just get random flare ups, the thing is I've always been really uncomfortable when it comes to going to the toilet, so before I was diagnosed I was just holding it in all the time as I hated going to the toilet, and ended up backing myself up, now I'm still really uncomfortable going but I no longer have control over my bowels so when it happens it happens, I have had accidents with it unfortunately

in reply to Emsky

We are all different and I am certainly not medically qualified but isn't IBS a bowel function disorder and your diarrhoea is maybe a reaction to the food you put through your gut and specifically your large intestine or bowel what ever is the preferred name?

In my case (and that doesn't mean you will be the same) when I was eating fermentable foods like those high in FODMAP's I have chronic diarrhoea like you describe.

Now I control my symptoms with low/no amounts of Fructans, my particular inflamer, I have perfect Bristol Stool type 4 (google it 😊).

Give it a try...it isn't difficult or costly and its better than being caught out with an accident...and you never know, it might help!

Emsky profile image
Emsky in reply to

I've ate the same stuff all my life though and I've always had constipation why would that all of a sudden change? The antibiotics are definitely to blame, also I have really bad food anxiety so the stuff on the fodmap list doesn't suit me as I either don't like it or I'm absolutely terrified to try it and also anything gluten free tastes like sh** from experience

in reply to Emsky

I hope you find a way soon...best wishes

IBSNetwork profile image
IBSNetworkPartnerIBS Network

As I’m sure you understand IBS is a very individual condition that affects people in different ways. There is no specific cause as to why it develops and therefore no single effective treatment, but by understanding how it affects you personally and what contexts make your symptoms worse and also those that relive them, you can learn to control and manage it.

We understand how difficult and embarrassing it can be to talk about your symptoms. We know how your symptoms can impact on your life and we can offer you support, advice and information to help you to understand and manage your condition.

Have you looked on our website ? theibsnetwork.org/the-self-...

If you have already looked on our website, but would like more specific advice about your symptoms, why not consider becoming a member of our community?

As a member you will have access to:

•our Helpline, staffed by nurses trained in the symptoms of IBS

•our ‘Ask the Experts’ facility, personal one to one contact through our website with our healthcare professionals (including gastroenterologists and dietitians)

•our Self Care Programme and Symptom Tracker which will help you to manage your condition. Similar to a diary, the Symptom Tracker allows you to keep a record of your symptoms which can help you to see if there is a pattern over time and can help you to understand your condition better

•our recipes updated monthly, specifically designed to be suitable for the sensitive gut

•our magazine filled with new research, recipes and articles written by our medical professionals

•a ‘Can’t Wait’ card and travel version translated into 12 languages (£5 value)

•a range of detailed factsheets, such as ‘Medications’, ‘Stress and Trauma’, ‘Diarrhoea’ and ‘Constipation’

•our growing number of support groups (dependent on area).

By joining, your membership is a way of donating, so your fee helps us to continue our work in supporting yourself and others living with this life changing condition.

At present we ask for a donation of £24 for Online membership or £34 for paper membership for a year’s support.

For more information about membership and to join visit our website - theibsnetwork.org/become-a-....

Emsky profile image
Emsky in reply to IBSNetwork

As I'm off work just now I'm really financially struggling so I wouldn't be able to afford a donation like that :(

ShaunieIBSLan profile image
ShaunieIBSLan

Hey Emsky :)

I've suffered from IBS-D for 28 years now.. antibiotics flair it up, so that is what probably caused your toilet issues also.. the only thing that put it right was immodium instants :) I took 4 straight away, then 1 after each loose bowel movement.. and I was back to normal again after 24 hours.. (not back to normal as in cured) back to normal as in 'control over my IBS-D'

As for the camera up your bum bum? It's a doddle m8 :) nothing at all to be worrying about and I doubt very much you will remember it happening :)

Good luck and stay positive ;)

Emsky profile image
Emsky in reply to ShaunieIBSLan

Immodium hasn't been working for me unfortunately

Emsky profile image
Emsky

I've had a look at the fodmap and the majority of it I already don't eat as I'm a picky eater, the stuff on the list that I do eat if I got rid of it I wouldn't be eating anything at all :(

martart profile image
martart

Have you ever had a colonoscopy , ever ? If not , you really cant be clear on the diagnosis

Emsky profile image
Emsky in reply to martart

No I've never had one as I was told 6 years ago ibs, and it's only been since the antibiotics I've gotten the chronic diarrhea

martart profile image
martart in reply to Emsky

Then , you really should schedule yourself a colonoscopy , because at this point you have no way of knowing that maybe something more serious is going on. After you have that, then you can go from there. I urge you to get one . Not fun of course but it will give you piece of mind to go from there with whatever treatment you might want to try. Take good care .

Emsky profile image
Emsky in reply to martart

Thanks, I can schedule one though as I have to wait on my bloods coming back from docs before they can refer me to gastrointestinal specialist at hospital

AshAlso profile image
AshAlso

If Immodium is not working, I would try Probiotics (if financially possible). They have helped me and I haven't even been put on anti-biotics. I'd imagine it'd really help you.

Also, I had a colonoscopy 2 months ago and it was quick and painless, really. Don't be scared. I have the smallest butt the world has ever seen and didn't feel any discomfort after I woke up.

Emsky profile image
Emsky in reply to AshAlso

Thanks, I'll see if I can find any. That's helpful I'm hoping it doesn't come to it but if I need one then I need one

weegmack profile image
weegmack

I’m so sorry you are suffering so much. You’re having an awful time and I can totally understand that you are at the end of your tether 😞.

Can I ask why you got antibiotics and what the name of them was? Not all antibiotics will affect the gut this way, so that’s why I’m asking. Has your GP mentioned C-Diff to you? And is there any possibility you could have coincidentally got food poisoning? Xx

Emsky profile image
Emsky in reply to weegmack

I've had food poisoning before and it's never lasted this long, I was put on doxycycline for my rosacea by my dermatologist

jalapeno1234 profile image
jalapeno1234

I too am a victim of antibio-caused D*... my IBS was generally constipation which I took for granted as I love being constipated now haha but ive been a mess since May 5th of this year.. weirdly I remember having some attacks all during the week before I started them but it took my issues from a 4/10 to an 8/10 ... you had a stool test? I finally, after NINE appointments of suggested ibs , managed to get some bloods done for h.pylori and a proper stool test. Awaiting results! at this point not thinking of the what ifs but the WHAT CAN I DO TO JUST LIVE NORMALLY AGAIN WITHOUT WORYINGS. Genuinely such an annoying part of life the digestive system. Ive had to eradicate coffee, onions, garlic, peppers, tomatoes, jalapenos(my fave) and certain breads..and thats just half! I'll never take my system for granted again... antibiotics are great for infection but my gosh what a price to pay, I really hope you feel better - 2 weeks on antis without probiotics is probably a bit rough, I took three doses of antibiotics without pros and I am still paying:(

Emsky profile image
Emsky in reply to jalapeno1234

I went on the antibiotics on 17th of April and been like this since I went on them, I thought it was the side effects and so decided to come off them but 10 weeks later and still the same, I've had 2 stool samples come back negative and awaiting results of my second blood test :( everything has been negative so far, I miss be constipated too at least I could go out

jalapeno1234 profile image
jalapeno1234 in reply to Emsky

In my opinion, two clear stool tests is good cos it means you wont have to take even more antibios thus making you worse.... it sounds like bad ibs to me, trust me its been nearly 9 weeks since I took the smallest dose so yours makes more sense than mine.... still bad though. Have you tried eating starchy foods? Ive had to stick to a bland diet of white breads , pastas, scones, welsh cakes, dry cookies, sweetcorn and broccoli and fish - weirdly seem to be ok with chocolate and alcohol depending but still a constant anxiety

Emsky profile image
Emsky in reply to jalapeno1234

I've barely been eating but when I do it's a toastie or pizza or muffins that's all I've been interested in eating, I've got no appetite and when I do eat it just goes right through me i thought initially not eating would stop me going to the toilet for a bit but it just reduces it

jalapeno1234 profile image
jalapeno1234 in reply to Emsky

pizza is risky cos of the tomatoes but im with you, literally eating my fave dry snacks.. im sick of hearing this from people but are you stressed over it? i dont believe mine was stress-induced initially but when i had terrible d* over and over i deffo got worried and i think its brought the consistency up and ive noticed everynight i dont get urges and can actually eat...morning are rough and filled with anxiety and stuff, Its shocking how little they warn over medication

Emsky profile image
Emsky in reply to jalapeno1234

I wasnt stressed before it happened, I've always had aniexty but had that years and it's never caused this, and if anything I was feeling really good before it happened as I had finally found out what was wrong with my skin on my face and getting something to help it, but I wasn't warned this could happen, and I don't leave the house unless it's close by and I know there's a toilet I can use if needs must and also wearing tena as a precautions as I also feel I've been peeing a lot more as well and when I need I can't hold it long :(

Emsky profile image
Emsky

I've had good posing before i never lasts 12 weeks, and it was doxycycline and it was to help me with my rosacea x

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