Needing some answers!

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Hi all, this is only my second post on here but I really wanted to gather some opinions as to what is going on with me. I've been having a lot of tests done for about 1 and half years now and I feel like I'm no closer to finding out any answers. I know problems with your bowels aren't easy to diagnose but I feel as though I'm being palmed off by doctors and not being taken seriously.

I thought I had IBS for around 10 years but my symptoms are getting progressively worse. I've had 3 different tests now that show inflammation in my bowel - am I right in thinking that IBS wouldn't cause this? I've had stool tests, a barium MRI (which showed inflammation to my terminal illeum), and a colonoscopy all showing inflammation. They said they're tyring to rule out crohns but the last time I saw the consultant he said it was just severe IBS.

I'm on Meberverine which makes 0% difference in my symptoms.

My symptoms are cramping, stabbing pains, nuasea, frequency in going to the loo (can be x8+ a day), loss of appetite, feeling like I've swallowed barbed wire throughout my entire digestive system, feeling fluey a lot of the time, sore throats, headaches etc... This is most days, not just on and off!

Is there any chance that this could be crohns? I feel scared to eat anything as everything seems to cause me pain!

Thanks in advance for any opinions or advice. 

Sophie xxx

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10 Replies

  • Posted

    Hello

    yes it does sound like Crohn's my daughter has the same thing she was diagnosed with Crohn's last May age 27 and the doctors took forever to find out what was causing her pain and she had the same as you it does sound like you could be having Crohn's and IBS try and look into your diet to see what works and what don't work and drink plenty of water as this really helps to flush out the bowels

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    • Posted

      Hi there, thank you for your reply.

      I'm sorry to hear that your daughter was diagnosed with Crohns, I'm actually 27 too. In terms of diet what sort of things can you recommend? Has anything helped your daughter? I'm vegetarian but it seems that it doesn't matter what food I eat it always aggravates my bowels even really simple food. Thanks again, Sophie x

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  • Posted

    That sounds dreadful Sophie. 

    As mentioned already most of your symptoms resonate with my experience of Crohns however it takes some time and numerous tests to be in any way certain.

    I'm not familiar with Mebeverine but it does not sound like an IBD medication. It is possible to have IBD and IBS concurrently as well as singly from time to time.

    I think it's important that you keep in touch with your GP and pressurise him/her for further referral if you do not have any respite as those symptoms are taking a mighty physical and mental toll.

    My GP has frequently hidden behind the fact that "you are under the IBD clinic" and has been reluctant to get involved again assuming that they are dealing with my problem in the best possible way. They are all busy people so I'll leave it there. Suffice to say that those who shout and complain more may be unpopular but make things happen.

    I wish you all the best

    Pete 

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    • Posted

      Hi Pete,

      Thank you so much for your reply. Even though I've not got a diagnosis yet it's good to read comments like yours as it assures me that I'm not going crazy!

      I didn't know that you could have an IBD and IBS at the same time, that's very interesting. Is there anyway to tell the difference in symptoms?

      The symptoms I currently suffer do make me miserable and I have to take time off from work when it flares up. It's really hard to expalin the feeling but it feels like someone has pulled barbed wire through my digestive system and I get quite a lot of coldy/fluey symptoms ans headaches. I feel lost in terms of any diagnosis as it's been around a year and a half of tests and still no closer to an answer.

      Thank you for the tip on GPs. If I'm honest I don't speak to my gp about the stomach issues at all as when I mention them she just says my consultant will speak to me about it. The next appointment I have with him is in July and I'm not sure if I can wait until them! I had a very painful colonoscpopy last week with the result of slight inflammation to the terminal illium which I'm not sure is significant or not?

      How long have you been diagnosed with Crohns?

      Sorry for all the questions, I am definitely a IBD newbie!

      Thanks again,

      Sophie

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    • Posted

      I was diagnosed with Crohns Colitis just over a year ago after varying levels of discomfort for some years.

      It might be useful to look at the Crohns and Colitis website for information.

      I understand that IBD (both Crohns and Ulcerative Colitis) involve actual inflammation to a lesser or greater degree somewhere (or everywhere) in the digestive tract. IBS conversely does not have any actual inflammation whilst having very similar aches pains and symptoms to IBD.

      I'm no expert Sophie but the fact that some actual inflammation was present and discerned in the colonoscopy would point to some form of IBD. However it is not as simple as that as you are beginning to find out.

      Many people suffer with pain and discomfort for years but never have inflammation present or presenting in other blood tests etc. These are generally IBS sufferers. 

      Just to complicate things further the presence of inflammation is not necessarily IBD as certain microscopic bacteria have to be found.

      I would read as much factual information as you can find from medical or reliable sources. These forums are very useful in terms of sharing but you can get "advice" from non experts which is based on their own experiences and as we know everyone is different and what works for one may not help another. Sorry I'm ranting.

      Regards 

      ​Pete 

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  • Posted

    Hi Sophie

    Sounds very much like Crohn's I'm afraid.

    I also underwent a plethora of test for about 5 years and was fobbed off with IBS and eventually depression..... Which just made me laugh at the time. I had ALL the symptoms you described.

    It wasn't until a major flare, high temperature, constant diarrhoea and vomiting for three weeks followed by hospital admittance after becoming so weak from weight loss. I was there for three weeks undergoing tests, continuing to starve to death before they eventually had to perform emergency surgery to find out what was wrong with me. And it was Crohn's in the Terminal Iluem. Notoriously difficult to diagnose apparently!!!

    Getting the diagnosis is a nightmare and the disease is no fun whatsoever..... But at least when you know what it is you can make informed choices.

    Don't give up, I'm sure diagnosis is just round the corner. In the mean time, take as good care of yourself as you can..... Diet is a major part of Crohn's management, and very individual..... But a good place to start!!

    I wish you the best of luck

    Hannah x

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    • Posted

      Hi Hannah,

      Thank you so much for your reply, it's really helped me and made me feel that I'm not alone in this! It's also good to know that my gut feeling (excuse the pun!) could be correct in that I could have Crohns.

      I really can sympathise with you with the amount of tests I'm having. I can't believe you had to go through 5 years of them. It does seem like Crohns is really hard to diagnose. So far I've had the standard blood tests, stool tests, an endoscopy, sigmoidoscopy, x2 colonoscopies and a Barium MRI. So far inflammation has show up in the stool test, 1 colonoscopy and the in the Barium MRI. I'm sure they will want to do more unless they fob me off with severe IBS again!

      I can't believe you had to go through that just to be diagnosed, that sounds absolutely awful. I hope that you have the support you need and are able to manage it now? What treatment options are available?

      I'm at the stage now where I just want to have a definitive diagnosis, and even if it is Crohns at least I can face it head on instead of not knowing what's going on!

      Do you have any diet tips I could follow? I'm vegetarian but I find that most things cause a flare up in my symptoms espeically fruit, nuts and veg.

      Thanks for your help again. It means a lot

      Sophie x

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    • Posted

      Hi Sophie, I know how frustrating it is to know that there's something wrong but feel like nothing's being done. The fact that you're under observation and tests are being carried out is good. However it does make you wonder what exactly they need to get a definitive diagnosis of Crohn's. Perhaps you could ask that question next time you see the doc.

      The treatments for Crohn's are quite limited and come with a multitude of possible side effects. Their effectiveness can range from life saving to worse than useless!! But everyone responds differently so it is so important to try things out with an open mind. Bottom line ( no pun intended) your looking at Steroids, Immunosuppressants (Azathioprine and Mercaptopurine) and Biologics (Infliximab and Humira). There is also a liquid diet treatment which I have used instead of steroids over the years. Tough but much less harmful than steroids.

      I was a vegetarian all those years ago when I first encountered problems. I had to start eating meat again because i simply couldn't tolerate the alternatives. But I only ever eat organic meat.

      I removed sugar, dairy and wheat completely from my diet for three months....... So hard, but so worth it. It allowed me to discover certain foods that really triggered my symptoms. Also it made me really think about diet in a different way. I found that I am lactose intolerant. I also found that although I can tolerate wheat, I didn't want quite so much of it in my diet when there are alternatives. By removing these elements for a significant period it really allows you to discover new things.

      As far as fruit and veg is concerned I learnt to eat fruit a la blender!! Peel it, chop it, put it in the blender with some cold water..... Drink. I start every day that way. Avoid skins. No nuts... Too sharp. So organic smooth peanut butter. Onions, celery I have to cook.... Never raw. And go easy on tomatoes. Specially sauces on pasta. My rule is to make pretty much everything myself. Can be a bummer (there it is again) when eating out. And one last thing, which doesn't really concern you being veggie, I absolutely do not eat pork based products. I can eat pork, but not ham,bacon etc. It really is a trigger for me!!

      And after all of that, it's quite possible that none of it is relevant because you're you and all the above is me!! So Sophie, just remember, you are the best judge for how you're feeling, what works for you and what you believe you need going forward. Research, read, talk, listen, but most importantly, listen to your heart. Being happy and avoiding stress are so vital going forward..... For the well and the unwell!!

      Hope this helps in some small way.

      keep me posted as I would like to know how you're travelling.

      Most of all, be good to yourself.

      Hannah x

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  • Posted

    "... feeling like I've swallowed barbed wire throughout my entire digestive system"

    This is one of my symptoms and I have Crohns. Pay attention to which foods/drinks cause you distress. I might take a couple of days to a week to know which food it is. Many people stay away from gluten, corn and dairy, caffeine. I wish you the best!

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