Why is it getting worse?

[Emshall88]

Hey everyone, 

This is my first post here, though I’ve been reading up on lots of posts from others. To keep things brief, I was diagnosed with ibs over 10 years ago when I was 14 (I’m now 25). The doctor took my bloods and listened to my symptoms and that was enough to satisfy him that I had ibs. I had the occasional d and stomach cramps, but back then was very easy to manage. I identified my trigger foods and made sure I didn’t exercise straight after eating (as this can be a trigger for me). After a year or two, I developed the c side of things, and although I fluctuated between c and d, I felt like I had things under control. 80% of my life was ibs free, I’d get a flare probably once or twice a month lasting for a day or so.

Fastforward to now and things have taken a turn for the worst. It started before Christmas with the most god awful cramps and d. You know the kind that make you want to curl up in a ball and cry? Since then, I can honestly say there hasn’t been a day where I haven’t been plagued by symptoms. I’m getting d and cramps at least 4/5 times a week, and if I manage to go to bed before the d starts I have still had bloating, a rumbling stomach and an insane amount of gas all day. To say I am totally exhausted is an understatement. I work from home which is a huge relief, as I have not had to have any sick days. But every time I have plans, the inevitable happens and I end up getting ill while I am out of the house.

I am absolutely baffled as to what is going on. I’m really happy with my life and am the least stressed I have ever been. I eat a great diet and haven’t eaten an onion or garlic for years lol. Or any of my trigger foods for that matter. I tried going gluten free to see if that helped and it made things even worse! I’m worried there’s something seriously wrong with me. Maybe that initial diagnosis 10 years ago was wrong?

I went to the doctors and they’ve taken my bloods and a stool analysis, which I’m waiting for results on. Because of my age, I highly doubt they’ll refer me for any hospital tests, and that thought is quite worrying to me. As I’m writing this, I’ve had d every single day for the past 4 days. It’s just not normal!

I guess I’m wondering if anyone else has been in this position and can offer some advice? How do I push for these tests in the hospital? And is it worth me doing a colonoscopy? Thanks everyone, I’m feeling pretty alone with all of this right now 😭

[Jeffrey Roberts]

Hello Emshall88,

Glad you found us. I'm so sorry that your symptoms have been aggravated since before Christmas. IBS does tend to wax and wane in people. Yes, the diagnosis could be incorrect from 10 years ago. That can happen but NOT usually for someone diagnosed with IBS.

It's good that you got some new blood work and stool tests done. One stool test called a fecal calprotectin stool test can help rule our inflammatory bowel disease (IBD). Not sure if your doctor had you do that too. Other stool tests looking for an infection are also helpful. Had you been on an antibiotic in the last 6 months? If so, an infection called C. Difficile could also give those symptoms. You would specifically have to do a C Diff stool test to look for this.

I hope that all of your tests come back negative so that you don't have anything else besides IBS. IBS-D is not easy to live with, but there are treatments that can give you a better quality of life. I wouldn't push for a colonoscopy unless your blood work indicates that you have some inflammatory markers.

I realize how frustrating and scary this is. Hang in there.

Please keep us posted on your results.

[Regina S.]

16 hours ago, Emshall88 said:

Hey everyone, 

This is my first post here, though I’ve been reading up on lots of posts from others. To keep things brief, I was diagnosed with ibs over 10 years ago when I was 14 (I’m now 25). The doctor took my bloods and listened to my symptoms and that was enough to satisfy him that I had ibs. I had the occasional d and stomach cramps, but back then was very easy to manage. I identified my trigger foods and made sure I didn’t exercise straight after eating (as this can be a trigger for me). After a year or two, I developed the c side of things, and although I fluctuated between c and d, I felt like I had things under control. 80% of my life was ibs free, I’d get a flare probably once or twice a month lasting for a day or so.

Fastforward to now and things have taken a turn for the worst. It started before Christmas with the most god awful cramps and d. You know the kind that make you want to curl up in a ball and cry? Since then, I can honestly say there hasn’t been a day where I haven’t been plagued by symptoms. I’m getting d and cramps at least 4/5 times a week, and if I manage to go to bed before the d starts I have still had bloating, a rumbling stomach and an insane amount of gas all day. To say I am totally exhausted is an understatement. I work from home which is a huge relief, as I have not had to have any sick days. But every time I have plans, the inevitable happens and I end up getting ill while I am out of the house.

I am absolutely baffled as to what is going on. I’m really happy with my life and am the least stressed I have ever been. I eat a great diet and haven’t eaten an onion or garlic for years lol. Or any of my trigger foods for that matter. I tried going gluten free to see if that helped and it made things even worse! I’m worried there’s something seriously wrong with me. Maybe that initial diagnosis 10 years ago was wrong?

I went to the doctors and they’ve taken my bloods and a stool analysis, which I’m waiting for results on. Because of my age, I highly doubt they’ll refer me for any hospital tests, and that thought is quite worrying to me. As I’m writing this, I’ve had d every single day for the past 4 days. It’s just not normal!

I guess I’m wondering if anyone else has been in this position and can offer some advice? How do I push for these tests in the hospital? And is it worth me doing a colonoscopy? Thanks everyone, I’m feeling pretty alone with all of this right now 😭

Hi, I just read your post. I just posted for the 1st time and I am in tears beyond.  I am trying to get some suggestions myself.  I feel l have no control over this curse and its making me depressed. I can we treat something without knowing the cause.  Hope we both get some answers. 

 

[Emshall88]

16 hours ago, Jeffrey Roberts said:

Hello Emshall88,

Glad you found us. I'm so sorry that your symptoms have been aggravated since before Christmas. IBS does tend to wax and wane in people. Yes, the diagnosis could be incorrect from 10 years ago. That can happen but NOT usually for someone diagnosed with IBS.

It's good that you got some new blood work and stool tests done. One stool test called a fecal calprotectin stool test can help rule our inflammatory bowel disease (IBD). Not sure if your doctor had you do that too. Other stool tests looking for an infection are also helpful. Had you been on an antibiotic in the last 6 months? If so, an infection called C. Difficile could also give those symptoms. You would specifically have to do a C Diff stool test to look for this.

I hope that all of your tests come back negative so that you don't have anything else besides IBS. IBS-D is not easy to live with, but there are treatments that can give you a better quality of life. I wouldn't push for a colonoscopy unless your blood work indicates that you have some inflammatory markers.

I realize how frustrating and scary this is. Hang in there.

Please keep us posted on your results.

Hey Jeffrey

Thanks so much for your detailed answer! You’ve definitely suggested things that I’ve never considered before. I have more blood tests on Monday, but I have no idea what they for. (This seems quite standard for UK gps they just do things without really telling you why they’re doing them lol) so I will be sure to ask at my appointment. 
 

I don’t think I was given the C Diff test, but I’ve actually had to take antibiotics twice in the last 6 months for an unrelated issue. I took a good quality probiotic (symprove) both times and for a couple of weeks afterwards, so I’m hoping that may have prevented c diff — but who knows! 
 

Last night was the first night in ages that I didn’t have d, but I did still hve bloating and a bit of pain. I’ll pop back on with an update once I’ve been for my next tests!

[Emshall88]

7 hours ago, Regina S. said:

Hi, I just read your post. I just posted for the 1st time and I am in tears beyond.  I am trying to get some suggestions myself.  I feel l have no control over this curse and its making me depressed. I can we treat something without knowing the cause.  Hope we both get some answers. 

 

Hey Regina,

im so sorry you’re going through this too! It’s so frustrating knowing there’s a problem but not knowing how to solve it. Especially when many doctors have a vendetta around ibs and don’t think it’s worth investigating! Have you booked in for any tests?

[Jeffrey Roberts]

5 hours ago, Emshall88 said:

I don’t think I was given the C Diff test, but I’ve actually had to take antibiotics twice in the last 6 months for an unrelated issue. I took a good quality probiotic (symprove) both times and for a couple of weeks afterwards, so I’m hoping that may have prevented c diff — but who knows! 

Unfortunately, there is no evidence that probiotics help when taking antibiotics. The opposite seems to be true that probiotics seem to slow down the rebalancing of your microbiota after antibiotics.

[Esjie]

If not knowing what this might be (IBS or not) then you are going to need a definitive answer to set your mind at rest. IBS in itself can be really scary and horrible, and often feel far worse than "oh it's just IBS"!!

I know it can be hard enough in the UK to get a face to face appointment with a GP, never mind a consultant referral, but if you feel you would very much like further testing, then push for it. Let the GP know how worrying you find your symptoms to be. Let the GP know how harrowing it would be for you to endure these symptoms and have to hang on for endless weeks to see a GI specialist.

But when I get a sudden flare up of IBS, it does really feel awful, and I don't just feel I have the runs, I actually feel ill, or poisoned or something. No fun at all. The unpredictability and the actual symptoms of it are nerve wrecking because it's an almost constant high alert situation for the body and mind during a bad period or a flare. The food restrictions are much more than a nuisance.

So IBS can be bad enough. It doesn't have to be anything worse.

Also, IBS can disappear (for me anyway) at times. Then it can come back, linger, get worse, change, make me feel I'm definitely getting worse and it will never ease up ever....then it can suddenly go away again for X amount of time. Hopefully this is just a bad flare up that is lasting a while for you, and it will change again.