3 years of pain please help

Digestive health
1

Hi all,

I have been suffering with my stomach for 3 years now, it started with severe pains in my stomach, mucus and blood in my stools, mostly very loose stools or ever so often rabbit like stools, constant nausea and constantly tired but in to much pain to rest! If I need to go to the toilet I have to go straight away or the pain makes me throw up! I never get the empty feeling after going I have to keep going every few minutes untill it's like passing stomach acid.

I had an endoscopy and my lower bowles checked and was found to have gallstones... so had my gaul bladder removed... a year on and nothings changed! I lost a ton of weight untill recently when put on more Meds I have piled it on even though I cannot eat a full meal without feeling uncomfortably full! I have no appetite!

The pain is so bad I have worked up to oramorph to be able to sleep! I saw another specialist last Tuesday and have been sent a urgent colonoscopy appointment for next week.

They keep saying it's ibs, I have tried all the different types of medicans they have given me over the last couple of years, I have seen a dietician, but even when I cannot eat or even drinking water the symptoms remain. I have done allergy tests too.

I have had a year and a half of work due to this and I'm now trying to work through as I needed to complete my apprenticeship and don't want this to rule my life however I constantly have to have time off because I can't deal with it!

I'm only 20 so as you can imagine this isn't how I expected to spend the years after I turnt 18!

I get the pains at the top and bottom of my stomach, they spread to my back and my hips ache alot!

When I had my lower bowels checked last year there was inflammation but because the gaul stones where found they said nothing of it. When I had that done the pain was sooooo bad even tho i was sedated like when I need to pass a bowel movement. I get sweaty, I shake, I can't breathe and I end up being sick from it.

I'm hoping the colonoscopy tells us what it is however if it doesn't I don't want to just keep hearing there's nothing they can do as I can't live my life like this anymore! I'm risking loosing my job because of all the time I need off.

I guess I'm just wondering if anyone has the symptoms and a diagnosis?

This has caused severe depression and anxiety

Also if relevant I have pcos too. I don't drink and i dont smoke anymore

Any advice welcome I'd be very very grateful!!

I just want someone to give me hope that this won't keep going on forever!!

Thank you

2

Sorry.to hear all your problems. You just have to be strong for yourself. I am in your situations. Constantly vomiting and stay in restroom for hr and keep going back. 5 GI doctors no solutions. Costing lots of money to run all kind of tests.

3

Wait to see if your colonoscopy shows anything. It is also possible you have IBS if all your tests are negative.  Sometimes gallbladder removal can cause further disturbance and lead to IBS.

4

Yeah I'm going to have to see what they say, I also have a scan for my pcos on Friday so should know if that's causing any issues then. I'm fine if the diagnosis is ibs but when the specialists say theres not many other things I can try to control it if it is that, it doesn't ease my mind at all, I have tried researching into people who have had such sever ibs before but I can't seem to find anything. I did hear that the removal of the gaul bladder can cause more issues but I never had a follow up after the operation so I just assumed it would be fine

Thanks for replying

5

Hope you find answers soon!

6

If you find out you have IBS, perhaps research IBS clinics who may be able to give you treatment tailored to your needs.  Also look into natural treatments.  Some people find gut targeted hypnosis helps.

I am surprised you had no follow up to your gallbladder surgery; I always assumed a follow up was standard procedure

7

hi karly, hope you get well soon, have you had your H- pylori and BR swallow test( sorry for spelling mistake)? if not please go for it, before putting yourself on long run medication you have to find the root cause first. a few suggestion for you,

dont drink water after having your meal, drink before having it.

try to avoid cold drinks and cold water and prefer warm water at least 12 glass per day.

try to eat lighter diets.

8

Hi thankyou for the reply!

I haven't... it was mentioned last week, but she did a physical examination then said she needed to speak to her lead and they would contact me, then the urgent colonoscopy appointment came through.

I have already stopped drinking cold drinks it didn't helpsad

I'd tried eating so many different diets/foods it never changes! I'm at my wits end!

9

Yeah I will do thankyou! They said if it's ibs I'm going to be sent to London to a specialist because they don't know what else to try

Yeah I find it odd! I had it done private so may be why

10

I had a private endoscopy done and I still had a follow up appointment.

11

Hi Karly. so sorry to hear you've been so poorly with bowel issues, at such a young age too. from your post it sounds to me like the doc's have focused on your gallbladder, & kind of ignored the bowel! the fact you've had inflammation & blood previously points more towards inflammatory bowel disease(ibd) rather than ibs, but it is common to have both together unfortunately. 2 things: firstly, have your colonoscopy & see what the findings are.  secondly, ask your consultant to send you for a sehcat scan. this is to see if you have bile acid malabsorption or bam for short.  it causes frequent urgent diarrea that leaves you anus/rectum constantly sore, bloating, stomach ache. you can have this condition even if your gallbladder has been removed. it commonly mimics the symptoms of ibs & ibd & is often overlooked because of the similar symptoms. i was diagnosed with it in may 2015 & put on meds for it which drastically improved the symptoms within weeks. its an easy non invasive scan that involves swallowing a tracer pill, then quick specialised scan. you go back a week later have another quick scan. from this they can tell if you have bile acid malabsorption & treat you.  i have colitis (ibd), ibs-d, fructose malabsorption & bile acid malabsorption, so it is possible to have several condtions going on simultatneously!!!   Hope this helps hun. let us all know on here how you get on. x

12

oo i hadnt even heard of that! i will definitely mention that to the doctor! they just dont seem to think anything serious is wrong because im so young, but the pain is awful, i end up struggling to stay sat up when it gets really bad, they told me i wouldnt have gaulstones because i was so young then i did! Then removing the gaul bladder just seemed to make it worse, i know some people still get pains ever so often but every day with all the other symptoms too is abit ridiculous! obviously i dont want anything serious to be wrong so ibs doesnt seem to bad.. but then on the other hand theres no proper treatments for this as they still dont fully understand it and ive literally tried every medican.. even up to 3 versions of the same sort for the last couple of years now and nothing changes! i mean im sure being on oramorph and/or strong codeine tablets are supposed to block you up.. but i cant even drink water without instantly having to go!  i lost so much weight i looked ill! the last 6 months i was put on pregabilin on such a high dose and i have gone from underweight to obese... to then be told they cause weight gain which if they worked i wouldnt mind but all they did was make my head feel funny! every time i go back they just up doses and i feel they just dont care! To make it worse i have knock knee and collapsed feet so i need them operated on... but i have to be almost underweight to have it done so this is set me back with that!  

its just so frustrating as i work with mostly older men in my company, and i hate talking about why i have to go home or why im always in the loo... i dont want to loose my job but i simply cannot sit there when its hurting and i cant hold my bowel movements! but noone seems to get how painful these things can be! 

They apparently dont offer any form of checks for pcos sufferers under i think 25 once your diagnosed either.. which shocked me... since i had many many cysts when i had my scan when i was a mid-teen, and the fact alot of my symptoms link to ovarian cancer.. i would have thought they would have atleast checked that off before it hit the 3 year mark! especially since ive recently started needed to wee alot more to and become stupidly spotty!  and have had 2 family memebers with it in the past.. one being 24 whos batteling it now!

I just feel my life is being ruled by this and they didnt seem to care.. however it is worrying me that i wasnt told last week id need a colonoscopy then i suddenly got a urgent appointment letter ...  i think im just abit all over the place at the moment!!

Thankyou for your help!  ill keep you informed smile x

13

hmm i think i will bring this up next time i see the doctor then! thank you!

14

Katy, regarding the pcos, if i were you i would go back to your gp & tell her exactly what you put in your 2nd to last paragraph. the fact you have a family history of ovarian cancer & a young relative aged 24 currently battling it, should warrant an urgent transvaginal ultrasound & pelvic ct scan to have a look, & an urgent referral to gynae to follow it up. just because you aren't yet 25 doesn't to me seem a good enough reason not to be checking this thoroughly when you have symtpoms that link to ovarian cancer.  I'm not trying to scare you hun at all, but surely with family history plus your symptoms, your gp should be putting the relevant checks in place?? I think you should see your gp. x

15

After writing that i did work myself up abit and called my gp! waiting for a call back so will let you know asap!.... I only found out my symptoms link due to my relative as i never even considered it! but im shocked the doctor wouldnt have thought of it...   thankyou! x

16

i have a scan tomorrow smile