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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Advice needed - don't know where to turn.


05-21-2015, 05:05 AM   #1
SarahLouise
 
Join Date: May 2015
Location: Cardiff, United Kingdom
Advice needed - don't know where to turn.

Hi everyone. Firstly, gonna ask you all to bear with me as this is going to be a long post. It's about the last 10 years of my life and really not knowing where I should go from here. So thank you all in advance for any advice.

I am a 26 year old female who began having 'typical' IBS symptoms at around age 16. It was mainly sporadic bouts of diarrhoea and at the time, I was sitting exams so put it down to stress. At that point, I wouldn't say the flares had any major impact on my day to day life, just a minor annoyance sometimes. Fast forward, as I embarked on my 3 year university degree, I did notice an increase in symptoms (abdominal pain and diarrhoea) to the point where I was popping above the recommended dose of Loperamide tablets each day in order to be able to attend lectures regularly. I think it was probably around my final year of university where I noticed that fatigue was starting to have quite an impact on me and I was struggling to attend a lot of the time because I was just too exhausted. It may have been around this time I was referred to the hospital by my GP after I ended up in A&E one morning after suffering 12 hours straight of constant diarrhoea and agonising pain. Not a lot came of that admission to the hospital, I think they just ruled out some stuff like my appendix and ovarian cysts and discharged me. GP said it was IBS and for the next couple of years I tried every medication and diet modification out there but my symptoms never improved, just seemed to progress.

I moved to a new city after university and in the last year and a half, have been referred to a GI Consultant at the hospital. Upon meeting her, she was absolutely convinced I was suffering from Crohn's Disease in my small intestine. She ordered the following tests and these are the results/outcomes:

MRI - showed apparent thickening in my Terminal Ileum and at the ileocecal valve.
Faecal Calprotectin (test 1) - Showed inflammation levels of 250
Colonoscopy of large bowel - Normal presentation and normal biopsies (scope was unable to reach into my Terminal Ileum)
Faecal Calprotectin (test 2 - after a course of Budesonide) - Showed inflammation levels of 75
Capsule Endoscopy (while on course of Budesonide) - Normal small bowel presentation, but did find severe erosive gastritis in stomach and first part of large intestine
White blood cell scan (completed around 2 weeks after finishing course of Budesonide) - normal presentation
Faecal Calprotectin (test 3 - at same time as white blood cell scan) - Showed inflammation levels of 29

I see my Consultant again on the 26th May and I am so terrified she is going to discharge me with a diagnosis of IBS. At every previous appointment I have had with her, she has said herself she is 99.9% sure I have Crohn's disease but just needed visualisation of the disease before she could give me a firm diagnosis. In light of my recent tests, I don't think this is going to happen now. I don't know how to explain the thickening shown on the MRI, but I suffer with chronic lower right quadrant pain. I have a strong family history of IBD (grandparents on both sides and cousins). I suffer from debilitating fatigue, joint pain (particularly in my knees, making it difficult to be mobile at times), recurrent mouth ulcers, chronic and nocturnal diarrhoea, severe lower abdominal cramping, night sweats, mucus in my stools, blood when passing stools, haemorrhoids, nausea, loss of appetite and some weight loss (not drastic), as well as a Vitamin D deficiency.

Has anyone else had a similar experience and can advise where I can go from here? I don't want to let my Consultant discharge me without her explaining previous things she has said as well as earlier test results (the MRI and my initial faecal calprotectin). I am currently out of work, I have lost 3 jobs due to this and I couldn't even entertain the idea of returning to work with the way I feel day to day.

Thank you all for reading, sorry about it being such a long post! x
05-22-2015, 07:48 AM   #2
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
Welcome to the forum SarahLouise,

I'm so sorry to hear that you have been suffering with these symptoms for so many years and that it's had such an impact on your life - that's something that a lot of us here can relate to but I hope with the right treatment that things will get much better for you.

I suffer from debilitating fatigue, joint pain (particularly in my knees, making it difficult to be mobile at times), recurrent mouth ulcers, chronic and nocturnal diarrhoea, severe lower abdominal cramping, night sweats, mucus in my stools, blood when passing stools, haemorrhoids, nausea, loss of appetite and some weight loss
Your symptoms are consistent with Crohn's and not with IBS, so in my opinion it would be quite wrong for any gastroenterologist to ignore this and give you an IBS diaganosis.

While your presentation in terms of endoscopic findings and imaging may not confirm Crohn's definitively there are observations that need to be explained - the TI thickening on the MRI and your raised faecal calprotectin. Your camera pill results may have been significantly affected by the course of budesonide.

If you find yourself in the position of being discharged without treatment, I would ask your GI if you could try exclusive enteral nutrition (EEN) - basically drinking complete nutrition drinks instead of eating normal food for usually 6-8 weeks. It's an effective treatment for inducing remission for a lot of Crohn's patients and without the side effects of steroids. Perhaps they would agree to see if this helps you, since it's a side effect free treatment. Did you experience symptomatic remission on budesonide?

Some doctors do believe that you can have Crohn's AND IBS, so that is potentially a diagnosis that you could get too. Your GI did sound very sure that you had Crohn's and I would hope that they don't forget all the reasons for that certainty.

It may be that further testing is needed to rule out some other causes too.

I hope you get some answers soon. Please do keep updating us! And most definitely don't worry about the long post - we love this sort of information here
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
05-22-2015, 09:26 AM   #3
SarahLouise
 
Join Date: May 2015
Location: Cardiff, United Kingdom
Welcome to the forum SarahLouise,

I'm so sorry to hear that you have been suffering with these symptoms for so many years and that it's had such an impact on your life - that's something that a lot of us here can relate to but I hope with the right treatment that things will get much better for you.



Your symptoms are consistent with Crohn's and not with IBS, so in my opinion it would be quite wrong for any gastroenterologist to ignore this and give you an IBS diaganosis.

While your presentation in terms of endoscopic findings and imaging may not confirm Crohn's definitively there are observations that need to be explained - the TI thickening on the MRI and your raised faecal calprotectin. Your camera pill results may have been significantly affected by the course of budesonide.

If you find yourself in the position of being discharged without treatment, I would ask your GI if you could try exclusive enteral nutrition (EEN) - basically drinking complete nutrition drinks instead of eating normal food for usually 6-8 weeks. It's an effective treatment for inducing remission for a lot of Crohn's patients and without the side effects of steroids. Perhaps they would agree to see if this helps you, since it's a side effect free treatment. Did you experience symptomatic remission on budesonide?

Some doctors do believe that you can have Crohn's AND IBS, so that is potentially a diagnosis that you could get too. Your GI did sound very sure that you had Crohn's and I would hope that they don't forget all the reasons for that certainty.

It may be that further testing is needed to rule out some other causes too.

I hope you get some answers soon. Please do keep updating us! And most definitely don't worry about the long post - we love this sort of information here
Thank you so much for your reply, it really does mean a lot to have some support and advice in this situation.

I have always been concerned that the Budesonide influenced the results of the pill cam. My consultant said she felt she had to put me on something as I was so unwell and she couldn't just sit back and do nothing. When I had the results back, I asked whether the steroids might have affected the test and she simply said 'they may have. They may not. We can't know for sure.' I've considered asking for a repeat of the capsule endoscopy procedure but not sure whether they'd go for that.

I definitely felt better while on the steroids and my symptoms significantly reduced. My episodes of diarrhoea were much less frequent and I definitely had more energy. I just felt much brighter in myself. Unfortunately, one of the side effects for me was constant hunger and I put on a lot of weight. I think it was about a stone over a few months. My Consultant made the decision to take me off them when my capsule endoscopy came back negative and she referred me for a while blood cell scan. She said she needed me to be at my worst symptom wise which made sense, she didn't want to risk another possible false negative. But when I went into hospital for the test, I still felt the benefits of the steroids to an extent. I was no where near feeling my worst, which is back to how I am now. I will explain this to her when I see her but I'm worried she's going to say she doesn't have the necessary 'ammo' to refer me for anymore tests. I don't know what else the thickening in my TI could be, especially as that's where I suffer my constant chronic pain (in my lower right quadrant).

I will certainly ask about the nutritional treatment you mentioned. At the moment, I cannot eat anything without getting ill. Usually, I can handle a small amount of plain chicken and rice but even that is making me horrendously ill.

I want to go into that appointment and stand firm and demand better answers, it's just so hard not to get emotional in those situations after all of the waiting and constant symptoms
05-22-2015, 11:28 AM   #4
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
I understand completely - it can be very difficult to advocate for yourself when you are feeling so unwell and are under such stress. Emotions are understandably running very high too in such situations because there is so much at stake.

Can you take someone with you who can provide moral support or, if neccessary, speak for you if you feel very upset?

I'd also suggest keeping a symptom diary that includes how much these symptoms affect your daily life. Something easy to read, like a calendar marked with no. of BMs and pain rated out of 10, that you can hand over for your GI to look at to make your case for you if need be.

Making notes also helps so that you have all your reasoning written down and can refer to that if you need to ask her to justify her decision.

Even without a diagnosis, I think that if you have a patient who can't get adequate nutrition from a normal diet then a doctor ought to be able to prescribe nutritional support in the form of drinks like Fortisip or Ensure. It doesn't need to be the more expensive IBD specific formulas to be as effective as prednisolone for most people.

There have been recent studies that show you can have 10% of your calories from food and receive the same anti-inflammatory benefit. One hypothesis is that it works by altering the bacteria in the gut. Although the mechanism by which it works isn't clear, what is clear is that works in a similar proportion of patients to prednisolone - inducing remission for 70-80% of patients. Compliance can be an issue (which is why a lot of GIs don't like it) but if you've been feeling dreadful and can hardly eat anything anyway, then the benefit that you would hopefully experience in reduction of symptoms can easily be motivation enough to continue.

There's a very new (and small) study that shows 50% calories from diet and 50% from a restricted food list of 15 foods can achieve the same results -
http://mobile.journals.lww.com/ibdjo...icle=00007#P34 and the foods listed here http://mobile.journals.lww.com/ibdjo...00007.TT4.jpeg

In that study a few people were unable to tolerate the formula and did the restricted diet alone (I presume doubling the quantities of food!) with similar results.

EEN doesn't work for everyone, but it is a good option for getting into remission without the side effects of steroids and I'm thinking that given she was prepared to prescribe budesonide for you that perhaps she would be happy for you to follow one of these treatment protocols and for her to monitor you.

EEN is also used for maintenance - the Japanese protocol is 50% calories from formula and 50% unrestricted diet, the European protocol is exclusive formula for 4 weeks every 3-4 months and I've recently seen a study starting where the protocol is 2 weeks EEN every 8 weeks. Maintenance treatment with EEN has been shown to reduce the likelihood of relapse/prolong periods of remission but it can also be used with other meds to boost the efficacy.

If you're lactose intolerant then you would need a specialist IBD formula like Elemental 028 - less palatable but I drank the orange and pineapple flavor for years

It does sound like your doctor has been trying hard on your behalf to find the answer - when I had a white cell scan, I was told that wasn't done for many patients, so along with her other efforts I take that as an indicator that she is working hard to find the answer for you. I do understand your fears that she will give up now but I hope that won't be the case and that at least you could propose EEN as a treatment that she may be able to justify on the basis that it will do no harm - whereas I presume prednisone would be ruled out (I'd actually recommend EEN over this anyway!) and that she wouldn't be able to use immunomodulators either without a diagnosis.

I agree with your reasoning too that some patients do need to be at their worst in order to get a diagnosis. I would certainly ask about repeating the camera pill.

When is your appointment? I really hope you get some answers and a good treatment plan
06-03-2015, 09:03 AM   #5
SarahLouise
 
Join Date: May 2015
Location: Cardiff, United Kingdom
Hi there, sorry the delayed reply! My appointment was supposed to be last Tuesday. As my husband and I were on our way to the hospital, they called me and said they had to cancel it because my doctor had been 'called away' - whatever that means!!!! I was absolutely devastated. I have waited months to see her and get some answers and they cancelled at the last minute. I am now desperately trying to pin her down to ring me but no joy yet. This is getting ridiculous and I am so ill

I have written pages and pages of notes and questions to ask her regarding things like the thickening found on my MRI, my original FC result of 250 and the fact it reduced after a course of Budesonide.

Has anyone on here ever been diagnosed with Crohn's from their MRI results? My doctor seemed reluctant to do this. But if she doesn't think it's CD, surely she needs to find out what it is? My intestinal walls shouldn't be evidently thickened for no reason?! I am so confused. All of my symptoms match Crohn's disease, and I have a big family history of IBD. I am just so baffled by it all
06-03-2015, 10:16 AM   #6
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
I was diagnosed on the basis of a small bowel barium follow through that showed strictures (narrowings) in my jejunum and ileum so there are certainly different routes to diagnosis. I did also have high inflammatory markers in my blood but the narrowings alone would have been strongly suggestive of Crohn's - although it's certainly preferable to get a diagnosis before developing such complications.

There are also certainly people on the forum who have eventually been given a diagnosis of Crohn's without fitting the more typical raised inflammatory markers in blood and inflammation visible on colonoscopy + positive biopsies presentation.

Regardless of whether she can give you a definitive diagnosis, I think you need treatment and hopefully that will be clear to her - or you can make it clear.

If you are still unable to eat, I would ask your GP for a prescription for Fortisip to help you get adequate nutrition. And it's possible if you try drinking those exclusively for a few days that you will start to see an improvement - this in itself might be a useful observation that you can present to your consultant.

So sorry to hear that your appointment was delayed. Do keep updating.
06-03-2015, 10:24 AM   #7
UnXmas
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Join Date: Oct 2012

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Unfortunately, the cancellation doesn't surprise me. It happens often, and you really just have to be philosophical about it. It has nothing to do with how serious your condition is thought to be other than that it's not an absolute emergency.

Nothing has changed as a result of this: your illness is still the same, your test results are still the same. Whatever you were going to get out of that appointment you will get when it takes place after being rescheduled - unless you see a different doctor.

With tests, every abnormality gets reported whether it's significant or not, so I wouldn't worry too much about the details and instead wait for a doctor's conclusions. And if the conclusions don't take into account the severity of the symptoms you're experiencing (regardless of objective test results) then you have the right to see another specialist. If you have family with IBD, do any of them see a doctor who they like and who is close enough for you to see? With the NHS, you also have the right to select a particular doctor or hospital, you're not tied to your local one.

I hope this won't be necessary though. Cancellations happen. You should be a prioity for this consultant to see now. When you do, don't rely too much on notes and questions. Just be make it clear the symptoms you have need help with, and your concerns about IBD. I know many find lists of questions helpful, but I find it easier to see what the doctor feels the important issues are as well.
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