# Very frightened and looking for reassurance



## april2014 (Apr 28, 2014)

Hi. I'm a 33 year old female who in the past has had issues with constipation and heamerroids, mainly whilst pregnant, but over the past couple of years, bowels have been what I thought, was normal.

There have been a couple of incidences in the past 7 months where I've had a few urgent trips to the toilet, mainly when i've eaten out, my bm's were soft/loose and urgent. I didn't think much of it.

On 8th April, it was a normal day, I felt absolutely fine & ate a lasange for lunch (in a cafe) and instantly felt a strong urge to go to the toilet. I had very bad cramps and felt hot, sweaty, nervous etc. I had a very water BM and felt very ill. I spent the next 3 days after this, feeling terrible. my BMs were not a normal colour (sandy/yellow) colour and were a mix of very watery and very soft/loose.

In addition to that I had what I would explain as a hot nervous burning feeling in my upper abdomen (roughly where my stomach is) this came in waves, usually followed by nausea, rumbling/creaking in my bowels and then the need to go to the toilet. My appetite was completely gone and I felt full all the time, if I ate anything, even the smallest of things I felt full and sick (although have never vomited).

On 12th April I went to see an out of hours doctor at the hospital, after calling 111 with my symtoms. This doctor had a very quick feel of my tummy and said he thought it was IBS that I had. He gave me imodium, motilium & buscopan and advised me to see my own doctor on Monday but thought I'd be absolutely fine in a day or two.

I started the tablets & saw a GP on Monday, by this time I was very teary, upset, felt paniky, nervous, nauseous.... a real mix of emotions... just generally not myself. I told the doctor that I had been getting these waves of hot/burning in my stomach, urgent need to go to the toilet and feeling sick and having zero appetite. The GP was useless, told me I had a bug and tried to give me a prescription for fybogel!!!

I saw a different doctor on Tuesday 15th April and by this time actually was starting to feel a little bit more like me. I still had this hot/burning feeling in my stomach, especially upon waking and then felt very nauseous and needed to go to the toilet, but BM's were a little normal, normal colour, but still very soft. She advised me to stop taking the tablets and have a blood test, although didn't think it would show anything.

I had my blood test, continued to persevere with the loss of appetite and try to eat as normal as possible, still had this hot/burning feeling which I kept googling and reading all kinds of horrific things which were scaring me and then tried to convince myself it may be something to do with excess gas, or at worse ulcers.

Over Easter weekend I felt a little better still. Managed to go for a picnic with my kids, enjoyed cups of tea, hot chocolates, full dinners and although still waking with this burning/hot sensation it was passing in the day and I wasn't having as many loose BMs either.

I cannot remember the exact date but not long before this second wave of whatever it is I have, I cooked and ate a homemade lasange with my family. I did feel very full afterwards and wished that I hadn't ate so much, but wasn't rushing for the toilet.

I believe this is what set it all off again (lasange on two seperate occasions). I saw my GP again on 24th April and told her I had 4 very loose BM's already that day, had no appetite again, felt full, nauseous and this burning/hot feeling in my stomach was still ongoing and I felt as though I was nervous and frightened all the time. I was crying and I told her I'd been googling my symtoms online and reading all kinds of horrible things about cancers etc and that my nan had died of ovarian cancer so I was scared. She took my BP which was high and heart rate was 124, she asked me to hold out my hands with fingers outstretched and I had visible tremors.

She then told me that my thyroid blood results had been slightly out (I asked what she meant and she said neither here nor there) but she thought that I had an overactive thyroid & that is what my problem was. She said it can cause all kinds of problems including the ones I'd been experiencing. She said ovarian cancer was very unlikely, since its only been 7 months since I'd had a caesarian with my son & if anything was amiss, it would have been spotted & also my bloating wasn't consistent and I had no irregular bleeding etc. She told me bowel cancer would not give me a high heart rate either & she prescribed me propanalol to help with anxiety and said she'd liase with the hospital about starting me on a drug to lower my thyroid.

I still was feeling awful, with no real answers, my husband took me out to lunch the following day to try & ease my worries. I managed half a sandwich and was heaving, ran to the toilet and had a small amount of watery diarrohea... I felt terrible, I needed to get out of the restaurant and cried my eyes out when I got out, it felt like I was in a panic again.

That same day the GP called me back and said she'd spoken to the hospital and they were not convinced my problems were thyroid related as my results were only very marginally borderline and that they'd repeat my blood test in two weeks time and if the levels were still the same they'd do other investigations. She booked me to see her this coming Thurs 1st May.

On 26th April I called 111 again as I was feeling so terrible. zero appetite, feeling full, although if my husband actually presented me with food, I found I was able to eat some of it , not all of it as got full quickly, but I could eat (and I began to wonder if i'd built up an advesion to food) but I was still waking every single morning with hot/burning in my upper stomach, gurgling/creaking in my bowels, nausea and then desperately needing the toilet. BM's were changing between very watery to very soft/loose - fluffy type of thing. I was going about 3 times in the morning and then feeling a little better after that but left with no energy and no hunger for the rest of the day. Everything is an effort. The doc who called me back told me he to believed it was IBS symtoms, following a nasty bacterial bug or infection that had left me with an irritated stomach. he told me to stop the propanalol and start the original medication I'd been given, if I thought it was beneficial.

Yesterday I ended up at A&E again because I just felt so awful, they told me they couldn't do anything. All referrals for tests had to be through my GP (who is still convinced it's a hormal/thyroid issue) and that I'd need to go back and see her. They did have a good feel of my tummy and said it was soft with no obvious lumps. BP and heart rate were fine. Bloods were normal , apart from WBC slightly high but nothing to be concerned about. They gave me an omeprazole tablet to help with the burning in my stomach and advised me to buy some aswell and just take that with buscopan and see my GP.

I've taken omeprazole yesterday and today and today is the first day I have not had that burning in my stomach... BUT... I still woke up feeling very nauseous. I have had barely anything to eat in days, I weighed myself today and am scared to see i've lost around 6lb since all this has been going on, I'm now constipated, I did manage to go to the toilet a little this morning and although it was a struggle to go, it looked quite soft and was really smelly (don't know if that bears any relevance) and I've got this stitch time pain in the bottom right of my abdoment and my lower back aches aswell... I have forced myself to eat a cheese sandwich and two biscuits today but I just feel drained.. all I seem to do is cry and mope and I can't pick myself up. I'm going to see my GP again this afternoon.

I just want someone to understand, someone to offer me help and someone to reassure me that I'm going to be ok. I have googled so many symtoms for so many conditions and can't find anything that completely fits what I'm feeling, other than bacterial bugs in the stomach (although now the omeprazole has helped with that burning sensation, I'm more convinced it's acid) does any of what I'm going through sounds like IBS? I'm ever so scared.

Thanks for listening to my very long winded post... oh & I've been tested for cealic (sp?) disease, which was neg. I was told ESR wasn't raised so cannot be chrones or ulcertive coiltis... any ideas?


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## Kathleen M. (Nov 16, 1999)

If you are not eating, it is normal to lose weight. If you are not eating that can make some people nauseated. It can also make you feel pretty lousy overall as well. Why a lot of people feel so bad when they go on a diet to try to lose weight.

IBS often starts after a GI infection (sounds like you did have a bug) and eating foods that tend to have a lot of fat in them (like lasagna) can set off the IBS.

The GI tract is usually extremely active around the time you get up, so having more problems then is pretty consistent with IBS.


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## april2014 (Apr 28, 2014)

Thankyou.

Do you know what sorts of tests if any that I should be pushing for with the GP? I just find it very frustrating being told it's ibs, it's thyroids, you have a bug, nope it's ibs... take this medication, stop that medication, take this one... I don't know if i'm coming & going and trying to function normally , it's making me so emotional. I'm pretty sure too that the lack of food is contributing to my overall state... does anyone else actually totally lose all interest in food?

I have just re-gone over the calendar and it seems I had 7 days of really bad symptoms (8th-15th April), a few days which aren't really accounted for, 6 days of feeling a little bit more normal (17th-23rd April) where I was able to eat dinners and had some get up and go & then since 24th April, I've been right back down there again, feeling terrible.

I keep telling myself that I'm going to push through this, force myself to eat and get some energy but every morning I'm waking up feeling totally lousy and unable to function and it knocks me for the whole day. It's funny as really from about 6am until midday I'm completely useless to anyone, in pain, crying, feeling sick, going to the bathroom etc etc but as the day goes on I start to feel a little better.. does that sound typical IBS too?

It's the tiredness aswell thats getting me down but I think it's a combination of lack of sleep through worry and my baby waking me up and then lack of food too.


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## Kathleen M. (Nov 16, 1999)

I think it is normal to lose interest in food when you are feeling unwell. I mean usually if you think of a pet, when they won't eat that usually is a sign they are sick enough to need to go to the vet.

One of the common patterns of IBS is to be worse in the morning (when the GI tract is normally much more active) and better later on in the day.

There are a couple of theories with testing for IBS. Some people say push for every single test no matter how dangerous the test and no matter how remote the outcome. However that rarely finds anything, and the more typical of IBS your symptoms are (lose weight when you don't eat - IBS - rather than lose all kinds of weight while eating more food than ever - sign it may not be IBS) the less likely to find anything and the more stress you put on ths system from test after test after test and being told normal after normal after normal the worse you IBS will become.

Now for IBS part of the problem is you do need symptoms for a minimum of 6 weeks (and some people will want to see more like 6 months) before they will call it IBS. You have to get the chronic part showing up as chronic before you do go with that. So during that first couple of months there may be some confusion and some seeing if something else (like your thyroid) may be contributing or causing the upset.

And it can take awhile to find the right medications/diets/supplements to control your IBS so there tends to be a lot of try this, or try that and see how it goes.


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## april2014 (Apr 28, 2014)

Thanks again. It really helps to talk to someone who can atleast understand what i'm saying and what i'm feeling. My poor hubby is at his wits end as he doesn't know what to say to me and hates seeing me like this. It's more the emotional/crying all the time thats getting me down, but I'm putting that down to lack of sleep and lack of food.

At the moment I'm just taking the buscopan and the omeprazole (since yesterday) I'm just worried about how to get my appetite back as I feel if I could eat, i'd have more energy, I probably wouldn't be so irrational, thinking the worst and crying all the time & i'd be able to fight.. as it is at the moment, getting dressed is an effort.. I can't live my life like this!

To be fair on and off the problems have been happening since 8th April, so in the grand scheme of things not that long, although it feels like a lifetime.

What sorts of tests do most suspected IBS sufferers go through? I'm assuming there must be some tests, or is just a blood test, feel of the tummy kind of thing the norm to assume it is IBS? I've got this horrible fear that they're missing something, but having googled and googled, I can see i'm not alone in that & alot of IBS people are saying the same thing as they don't feel they've had a proper diagnosis.


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## Kathleen M. (Nov 16, 1999)

Generally the main first round tests are a stool sample (not all docs do it, but can be a good thing to ask about) and blood tests for inflammation and celiac.

Generally if health is good (no anemia, no inflammation in the blood work an other things seem OK) that may be the end of it.

Usually next round is a scope (camera down the throat if you have the acid and reflux symptom and up the bum). However there are risks for those so often if the risk of a complication is higher than the likelyhood of finding a something they won't do them (the do no harm thing).

Many people do not like that in 95% or higher of people with clear IBS symptoms (so no bloody diarrhea, etc or abnormalities in the blood work) that if they run you through the gamut of testing (do the scopes and maybe a few ultrasounds and CT scans and all of that for good measure) you find that 95% or higher of the people only have IBS and half of the people that have something in addition to IBS have one of those anatomical quirks that happen from time to time and aren't what caused the IBS (although a few may make the IBS a bit more severe than it would otherwise be).

The studies (and doctors are supposed to use the studies for what they do) tend to show doing all the scopes and other things on the very off chance you might find a something only makes the IBS worse either from the complications or from the stress of all the testing. I mean we have a few people here complaining that the normal screening colonoscopy you get at 50 or so to look for polyps started their IBS and are trying to figure out if they can sue for malpractice.

Some people are upset they can't get a doctor to do thousands of dollars of useless tests, the rest are worried their doctor is just doing the scope on them to pay off the loans on the equipment.


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## ClaireBear1202 (Apr 25, 2014)

Thanks for sharing your story April!

Im pretty new to IBS but it has also been an extremely emotional experience. I have also had frequent loss of appetite followed by weight loss and that full feeling where even the tiniest thing would make me feel ill.

I havent really identified any food that sets off my pain specifically, but Im working on it.

As far as tests go, I had TONS of blood work done checking the functions of my gall bladder, liver, kidneys, pancreas, and thyroid to make sure they were all doing well (everything came back normal), an Upper GI endoscopy (camera down the throat into the stomach), CT scan of my abdomen, which both also came back completely normal. Discussing all of the test results as well as my continual pain, fatigue, and loss of appetite with my GP as well as a gastro specialist they both seemed to agree that my symptoms + all these negative tests was evidence for IBS.

I am also scheduled for a Flex Sigmoidoscopy (a camera up the bum) just to verify that my bowels are indeed ok and its not something more serious. Maybe you could discuss of any of those tests would be something you and your doctor are interested in? Im not a doctor and I dont want to tell you what tests to have done (they are quite quite expensive) but it could be something to discuss at least.


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## Nojokeibs (Apr 14, 2014)

april2014 said:


> I've been tested for cealic (sp?) disease, which was neg. I was told ESR wasn't raised so cannot be chrones or ulcertive coiltis... any ideas?


This is a relief at least it's not that bad.

Food aversion is probably common if you get sick after every meal. I am actually glad I started to feel that way because I was obese at that point. But I also fast on purpose, so I can tell you how that goes. For me, I was too sick to eat anyway and I already had experience fasting because my mom had been ill and we'd tried everything together. A doctor I knew about came out with a book on fasting that explained a lot of the mechanisms involved. It's this one:

http://www.amazon.com/Fasting-Eating-Health-Medical-Conquering/dp/031218719X

I appreciate that WebMD now mentions colitis as a medical condition that is sometimes treated with fasting:

http://www.webmd.com/diet/features/is_fasting_healthy?page=2

My reading of your story brought fasting to mind maybe because you're having so much trouble eating. That said, it's your body and if doesn't seem right, don't do it. If you do try it, go easy, and know that it takes a couple of days to shift your metabolism to the fasting state. You also may want to check out the ketogenic diet, which I transition to before a fast. The theory of eating lots of fruits and veggies before a fast is good in that it makes sure your body has vitamins/minerals. But if your diet is good to begin with, then the keto diet will reduce discomfort more. Also lots of people take vitamins while fasting. I don't agree with everything Dr. Fuhrman says, but he does a great job overall.

A short fast has many benefits, but to make the flora quiet down and lower their numbers, it takes a longer fast. I never fast shorter than 7 days and even so, my flora comes right back after the fast. I also don't do it very often. Once every few months is enough for me, and it always improves my digestion a great deal. It does have a break in period though... after the fast, I get more bloating than usual. I think because I malabsorb sugars for a while until my body adjusts.

Unfortunately, Dr. Fuhrman didn't go into details about the flora in his book, but he does set to rest a lot of myths about fasting, and he continues his research into its benefits. If you've been watching health-type movies online (like Fat Sick and Nearly Dead) then you've seen Dr. Fuhrman before.


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## Mr. Lakers (May 12, 2014)

Been having IBS/funtional G.I. disorder for over a year now. Lost 60 pound in 5 months! I've been through hell.......wait i'm still here. I don't know what to tell you, no one knows how to cure or treat this effectively. I'm trying to decide whether to just end it all or feel like shit the rest of my life; yes im taking meds for depression. Only advice I have is rely on family and friends for support, and as people keep say, just hang in there........even though that doesn't mean shit or help at all.

This has to be one of the worst illnesses ever. You feel like your dying but death never come, so basically its just torture with no end in sight. Sure wish i had cancer or something treatable or life ending, fuck this torture.


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## Gia86 (May 18, 2014)

I've been googling for the past week and your story touches me the most.

I'm a 27 year old female living in NYC, and on April 29th I started to feel weird. At the time I was 140lbs, eating anything and everything my little heart desired. But that morning I felt a pit in my stomach. No appetite. As the day progessed, I ate, but after my meals I had terrible burping. That night, I had a scary case of diarrhea. I thought I was coming down with food poinsoning. The next day, I wasn't eating like usual. I was very gassy and crampy, Burping and farting.

It wasn't until May 6th, a week later, I decided to go to the doctor. I couldn't get an appointment, so I went to the E.R. I was very weak. I got a sonogram, and everything came back normal. EXCEPT, the corner of my heart. I had some fluid around the heart. This is when my panic and crying started. I was admitted into the hospital and hooked up on heart monitors. I cried all night, so did my family. Until I finally got another full sonogram of the heart the next day. The cardiologist came to me and told me it was a completely fine pericadial effusion, and that I probably had a virus, and it was going to go away on its own. The next set of doctors came in and told me my liver picture was a bit abnormal.

More anxiety. My blood work came back fine, but the picture was discolored. Then I was told my white blood cell count was low. I stayed in the hospital until May 9th, still having stomach pain and cramping with extreme gas. Gastroenterologists came in and checked me out every day. All of my blood tests and Xrays were coming back negative. They sent me home with a GI appt for May 12th, and didn't seem worried at all. "Just an infection".

I spent the weekend crying. I had to go a wedding on May 11th, and I just sat at the table for 6 hours, depressed and sad. My insides were all crampy.

On May 12th, I went to the GI. He said everything's normal and "it's just probably a little IBS". I walked out feeling a little beter, until I found out what IBS is.

Here I am, on May 18th, still so uncomfortable. I've been so depressed, I just want to get back to my normal life. I'm down to 128lbs. 5'9. I feel like a skeleton. Every morning, I have this solid-fluffy bowel movement. My breakfast every morning is 2 hard boiled eggs, no yolk, a plain yogurt, a banana. I watch my family and boyfriend eat real food, I go to my room and cry. I try to go for walks, and I get so weak, I want to sit down. I was always athletic, I work with kids and I'm usually running after them and playing with them. I feel paralyzed.

Yesterday and today I started to eat different food. Rice with plain chicken, soy pasta with little olive oil. And my stomach starts cramping and getting gassy 2 hours later. I never heard so many sounds come out of it before. I pop a Bentyl every so often. But I don't want to live like this. I'll do anything for some relief. I read all these stories on google and cry. When I open my eyes in the morning, I can't wait to get up. Then 30 seconds later, I remember what's going in my stomach. I can't even put my hand on my stomach without feeling like I have to barf.

I'm scared I'll never get better. Sometimes I think dying is better than suffering like this. The week I was admitted into the hospital, I was supposed to go engagement ring shopping. I can't believe I'm living this nightmare. When I go outside to the pharmecy, I see all these 25-30 year olds, at bars, the weather is finally nice, enjoying their life and laughing. I get so down. I'm so sad.

I know this is no relief to you, but just know you're not alone. I wish I can rewind to last month and not take my health for granted. I'm scared to go forth with plans. I'm scared to get pregnant in the future. I'm just so scared of everything.


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## april2014 (Apr 28, 2014)

Hi. I'm back again.

Thanks everyone for commenting, although some of you too are obviously really suffering it is somehow reassuring to know we aren't alone.

I've had some more blood tests done, everything is normal. I've had a stool test done now, everything is normal. I'm not being referred for any further tests, despite wanting them, because I have no red flags to suggest its anything sinister. The GP hasn't formally said to me 'you have IBS' but some doctors I've spoken to have said it 'sounds' like post infectious IBS.

I had a period where I felt semi-normal, was eating ok and having no nausea and no burning in my stomach, but still the loose BM's. I relayed all this to the GP who seemed disinterested. I asked for something to help bulk my stools and they gave me fybogel mebeverine.

For the past 4 days I've been really bad again, wake up in the morning, instantly feel nauseous... I toss and turn for a bit before deciding I definitely need the loo, funnily no cramping now though. It's been watery diarrohea once or twice every morning. I've been trying to eat normally and I have been managing breakfast and a small lunch but cannot face dinner. I did eat dinner last night & had to go the loo straight afterwards.

The burning in my stomach has completely gone away now, I think the omeprazole must have helped (I'm not taking it anymore), the nausea did go but it's back again in waves and worse in the morning, first thing. But still the diarrohoea persists.

Yesterday and today I've been really down, really emotional, no motivation to do anything. I just want to curl up on the sofa in my dressing gown and cry all the time. I'm so fed up of feeling this way and to top it off, I've been having what feels like the start of a UTI for the last couple of days. I think the doctors surgery are probably sick of hearing my voice!

I've done more reading and I do think I'm depressed, have never experienced depression before but I certainly feel very, very sad about 90% of the time. I'm still getting anxious and panicky aswell, almost everyday. I don't know how to control it. I think I've finally accepted that I 'probably' don't have cancer or anything as more and more results come back negative for stuff and the GP isn't atall concerned, but I still want a diagnosis, I want to know what is wrong with me, as I feel like i'm going crazy.

I have read some stuff up on health anxiety, basically fearing the worse and convincing yourself you have something serious wrong, which can esculate in full blown anxiety/depression and enhance any physical symptoms you're feeling (this sounds like me!)

I'm going back again next week to see the GP, I don't know why, I know I probably won't gain anything from it but I feel I have to go & ask for something to help me.

Just wondered, has anyone tried any chinese herbal medicines? I'm tempted to try. I think if I can sort my head out, perhaps my tummy issues will get better & similarly I feel if I can sort my tummy out, perhaps my anxiety/depression/stress will get better?


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## Kathleen M. (Nov 16, 1999)

If I don't eat dinner I will be nauseated by morning just like if I skip lunch I'll be nauseated by dinner time, but that's me.

I would definitely talk to him about your low mood and anxiety issues, and you might say it would help if he let you know it is IBS/functional GI rather than just not say anything about what it could be.

Personally I would focus on the anxiety/stress because even if the tummy sorts out while you are stressed and anxious you will have something else hurt or act funny sometime during the rest of your life and handling that now may make many things a lot easier.


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## samuel202 (May 30, 2014)

I know exactly how you feel. Although i was fortunate enough to be "exempted" from having diarrhea and/or constipation, i also suffered from a nervous breakdown a few months after being diagnosed. I remember the first day i went to see my GI doctor and he tells me "oh not to worry, u just have something known as ibs" and being completely misinformed about this condition at that time, i thought it was merely a bad case of indigestion or something. He gave me two medicines to control the spasms and i was feeling like new again. Unfortunately, i became overconfident and careless as to what i was eating and that was when i stared at the face of the true terror of ibs&#8230; excruciating pain that sent me running back to my GI doctor the next day. He gave me an additional medicine for gas and that was it. That's when i became my own enemy by becoming extremely nervous as to how long i'd stay like this. At this point i was completely oblivious to the fact that most ppl with ibs have it for the remainder of their lives. When i started reading stories about people having it for 40 or more years i felt like my spirit got pulverized and my life was submerged in utter despair. I suffered from pain for 4 months or so, and it was strong enough to keep me from eating or even getting out of bed at times. I lost 13 lbs in that time and i was just afraid of living to be honest.

That's when my parents recommended me to start working out seeing as i wasn't exercising in the least, and added that exercise helps with digestion, etc. So i decided to give it a try. At first it was extremely hard to adapt to it since i was feeling sick and had not moved a muscle since i was diagnosed; however, once i managed to become accustomed to it, my pain diminished considerably! Usually during and after i work out, i feel 100% normal, and i cherish this moment of freedom greatly. I convinced myself i could be happy again! Sure i still get some attacks coupled with nausea but compared to how i felt right after being diagnosed, i feel reborn







I also managed to gain 23 lbs back and i could eat almost anything not containing lactose again. I seriously recommend anyone suffering from severe ibs pain to try working out. It's the only effective solution i managed to find after months of total misery.


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