# Living with IBS as a 20 year old girl trying to work full-time and have a life



## Fairydust44 (Aug 25, 2016)

Hi everyone this is my story,

I'm a 20 year old girl from Devon in the UK and have suffered from bowel problems and depression for years. When I was 4 my depression really kicked in and when I became 17 I went on anti-depressants. I remember my bowel starting to play up when I was at ballet because there was a period of few weeks that I remember not being able to fit into my ballet leotard and tights because my tummy was just to swollen. This happened on and off for years and I also had a spout of Gastroenteritis.

In November 2015 I woke up one morning and my tummy had swollen up, I thought nothing of it really because it happens every now and again and it goes down usually within a few hours. A week had gone by and I was in agony, my tummy was just getting bigger and bigger so much so that I got taken to A&E by my parents and was in majors. They initially thought it was gallstones so made me take a pregnancy test and admitted me to a surgical ward for overnight pain relief and an ultrasound f my abdomen, kidneys and gallbladder in the morning. I was checked over by the doctors in A&E and the surgical team and they couldn't see anything was wrong with me bar the fact I looked 8 months pregnant (which I wasn't pregnant at all). So they discharged me home and I went to see my GP and they couldn't think of what could be wrong either so referred me to a Gastroenterologist. After seeing the GP every week and being continuously signed off and trying medication such as; buscopan, mebeverne and amitriptolyne. None of which worked. No one seemed to believe the amount of pain I was in! 2 weeks later I was back in A&E being seen by the medical directorate of the hospital and went to have x-rays on my tummy. They had seen that I was severely constipated even though I was still going to the toilet and suggested an endoscopy. Off I went back home, stomach started making noises as if it was bubbling, I was still going to the toilet, yet getting increasingly more swollen, so much so I couldn't fit in my normal clothes so was wearing pyjamas or maternity clothes my mum had bought me. I was so embarrassed to go outside because of what people must've thought about me. It was such a dark time.

Back in the previous September me and my friends booked to go to Disneyland Paris at the beginning of January, because I didn't want to waste my money and I thought it may help relax me, I went. The most stupid idea of my life!!! Was so swollen and in so much pain I could hardly walk around, I was so homesick and wouldn't eat and ended up staying 2 nights and getting an early flight home on my own.

Finally at the end of January I got to see my consultant for the first time. I had been keeping a food diary and a stool log anyway so brought that with me and he checked me over and wasn't sure what it was but that it wasn't normal. He sent me there and then for another x-ray of my abdomen and sent me up to book an urgent endoscopy (camera down the throat and biopsies taken of the stomach and small intestine). I had this done about 2 weeks later and the results had come back clear and there was no change in my x-rays. I went back to see my GP as I was still getting bigger and no body was telling me anything. He sat me down and showed me my x-rays and it showed my bowel was completely full of fecal matter and the gases in my bowel were coming back out into my stomach. The reason I was still going to the toilet was because there was literally so much in there out of force it was pushing the oldest amount out. He prescribed my pain relief and lots of laxatives to take to basically empty myself out. I started taking them straight away, changed my diet dramatically and was (and still am) gluten free and adding a lot more fruit and vegetables and exercising more at home. I got myself an exercise bike. After about 4 weeks of this continuously going to the toilet and exercising I lost a stone in weight and my tummy had gone down, however I was still in pain.

The end of March I went back to my consultant and he said it's just IBS and I need to learn to live with the pain and swelling and take laxatives for the rest of my life because my bowel just doesn't work properly. I cried and he discharged me and referred me to a dietitian. He told me about this herbal remedy from Russia to try so mum went online and ordered some for me because he couldn't prescribe it.

I went and saw a dietitian and went on the low FODMAP diet. I found it tough to begin with not having garlic or onion but I felt better on the diet but I was still getting the occasional swelling and constant diarrhea. After 8 weeks went to my follow up and they told me that the FODMAP diet hadn't worked properly as I still hadn't gone for a solid stool this year. She told me she'd write to my GP with a probiotic powder which you drink for him to prescribe and copy me and the consultant in and told me there was no more they could do.

A month had past and I've swollen up again. Try getting hold of the dietitian and nothing so I went to my GP practice to see if they received the letter and they had but hadn't done anything about it. I then had a phone call with my GP and he told me they are not allowed to prescribe it as it is a type of food. So again went online and bought it for £30 - haven't yet tried it as it came yesterday. The day after talking to my GP he was worried so booked me in to see another doctor as he was busy and she signed me off for 2 weeks and told me to take the laxatives (6-8 a day!!) and empty myself out so I can go back to work soon. She also said I'd have to do this every few months which personally I don't think is right.

So here I am 10 months on, swollen again and off work sick again, doctors are pushing me from pillar to post because they don't know what is wrong with me and saying I have IBS. If I have IBS then I think I have a very severe case of it. Does this relate to anyone? The only thing that helps me with the pain is heat so I constantly have a wheat bag on my tummy. If anyone has any comments or suggestions to give me I would be so grateful! Also this is the first time I've used this site so would like to know other peoples stories and see if we can help eachother. I have pictures of the progression of my tummy and video recordings of the sound if anyone is interested.

Thank you for reading my story.


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## Fairydust44 (Aug 25, 2016)

When I was 14 not 4, sorry!!


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## annie7 (Aug 16, 2002)

if you keep getting constipated it is a good idea to do what your doctor said and take laxatives if you need to on a daily basis to keep from getting backed up and impacted. nobody likes taking laxatives. i certainly didn't. but taking something every day to keep things moving is far better than the alternative of developing an impaction and getting all swollen up with feces, getting diarrhea etc. that's what my gastroenterologists told me. take they me to take whatever i needed to go and get things moving daily. for me, this was a combination of osmotic and stimulant laxatives.

like you, i was bloated all the time and my x-rays always showed that i was full of stool. i also had constipation problems since childhood.

you mentioned that you were eating lots of fruit and vegetables. if they are adding a lot of fiber to your diet and you are not getting any better you might want to rethink that and try eating less fiber. a lot of us here on the board --especially those of us with slow transit constipation ( as dx'd by the sitz marker test) have found that fiber is not our friend. fiber can help with constipation but ONLY if the constipation is caused by a lack of fiber to begin with. if your colon is already moving slowly anyway--and especially if you are already backed up--adding more fiber will only slow things down all the more and make your C worse.

i do hope you have a good gastroenterologist (not a GP--they don't always know as much about C) helping you out with all of this.

there are medications that can help with chronic constipation--amitiza, linzess and resolor.. ask your doc.

you might want to ask your gastroenterologist to have a sitz marker test (colonic transit study or shapes study) to see if your problem is slow colonic transit and not ibs. that's what i did. i was originally dx'd with ibs-c but i after doing some reading, i began to suspect that i had more going on than ibs so i asked my gastro doc for the sitz marker which i failed. my dx was then changed from ibs-c to colonic inertia. my colonoscopy showed that i had a long twisted colon. i had a few other tests as well which dx'd other problems.

we have a lot of info here on the board for dealing with and managing chronic constipation so you might want to do some looking around and do some reading.

http://www.ibsgroup.org/forums/topic/152106-the-great-list-of-remedies/

good luck with everything. hope you can find some relief. take good care.


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## Fairydust44 (Aug 25, 2016)

Thank you for your reply, it's given me a lot of insite. I haven't heard of the Sitz marker test in the UK but I will have a look into it and I'm trying to get re-referred back to the gastroenterologist. 
Have you had to have surgery with your problem?

Thank you too, take care


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## annie7 (Aug 16, 2002)

you're welcome. the sitz marker test is sometimes called the shapes study in the UK.

that's good you are going to get re-referred to a gastroenterologist.

yes i did eventually, after many years, have to have surgery but my problems were very complex and i was an extreme case. i had colonic inertia, pelvic floor dysfunction, a long twisted colon, megarectum, rectal hyposensitivity and abdominal adhesions from a previous surgery which strangled my colon and caused a blockage.. because nothing else worked. i was on daily laxatives which eventually did not work so well because my problems were getting worse. long story short, i had an ileostomy last november. like i said, i was an extreme case. please do not worry that this will happen to you--it won't . i just had too many problems going on, particularly the adhesions.


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