7 year battle - hoping for some answers!

[Sarah_Louise]

Hi everyone.

I can' tell you how pleased I am to have found this forum - I feel like I've been suffering alone for the past 7 years and as supportive as friends and family have tried to be, they can never fully empathise with how debilitating something like this can be.

So, here's my story:

At age 17 I suddenly developed severe abdominal cramps, diarrhoea and nausea. The doctors diagnosed with IBS-D and seemed to think it had been brought on by the stress of school exams. For the next 4 years, I suffered flare ups and treated them with general over the counter IBS medications. I always found the symptoms debilitating and I was aware they were impacting somewhat on aspects of my life but it wasn't until I was 21 that they really stepped up a notch and resulted in my first hospital admission due to pain and a severe case of diarrhoea (in the space of 12 hours I had to go to the toilet around 25-30 times). I was admitted into A&E where a very rude nurse first tried to palm me off and suggest I was wasting their time - that was until she realised I was running a high fever and soon backtracked on her previous accusations. I was referred to the Surgical Assessment Ward as Doctors were concerned about Appendicitis due to localised pain in my lower right abdomen. I was placed on IV fluids and very strong painkillers and reviewed through the night by the Senior Gastro Consultant who was quite happy my Appendix was not the issue and instead referred me for an Ultrasound to check for Ovarian Cysts. After a VERY long wait all day, the results came back clear and I was released on the condition that I could eat a small portion of toast. By this time, my symptoms had subsided so it was decided that I would be referred to the Endoscopy department for a Flexible Sigmoidoscopy. Unfortunately, NHS waiting times meant I had to wait around 8 or 9 months for this, in the meantime controlling my almost constant diarrhoea with Immodium and trying to manage my pain with Paracetamol and Ibuprofen (cue my second hospital admission after Ibuprofen caused a bleed in my stomach so this was no longer a pain management option).

All in all, I was referred for the Flexi-Sigmoidoscopy, a Barium Meal X-ray and an Endoscopy camera down my throat (which unfortunately had to be terminated early due to my adverse reaction to the procedure. They got far enough to see I had a Hiatus Hernia but couldn't gain full access into my stomach). As no inflammation was found on any of these tests, the Gastroenterologist discharged me back to my GP with a diagnosis of IBS. I was placed on the anti-depressant drug Amitriptyline to control my symptoms but after persevering with it for over a year and seeing no improvement, I saw no reason to be on it anymore.

I felt that after receiving a diagnosis of IBS, the GP was no longer interested in supporting me or conducting any further investigations and I was essentially told to take Immodium every day for the rest of my life to stop the diarrhoea. I personally felt this was not only terrible advice, but also insulting and not practical. All that did for me was temporarily stall one of my many symptoms but not give me any answers or cures.

So, fast forward a few years (I am now almost 25) and today I have finally managed to convince my GP to refer me for a full Colonoscopy due to an increase in frequency and severity of symptoms; the main ones which cause me the most suffering are listed as follows:

1) Severe and chronic watery diarrhoea containing lots of mucus (going to toilet up to 30+ times a day when a flare up is in 'full swing')
2) Severe abdominal pain and cramping - worse just before and during a bowel movement but never subsiding completely during periods of flare up's.
3) Constant bloated and distended abdomen.
4) Constant nausea and lack of appetite.
5) Severe pain (burning/stinging sensation) in rectum when passing a bowel movement. Also, itching around rectum generally.
6) Blood on toilet tissue and in toilet bowl (possibly linked to pain in rectum?)
7) Constant tiredness/lethargy/lack of energy.
8) Night sweats and an over-sensitivity to heat generally.
9) Weight loss but ONLY during periods of flare-ups.
10) Frequent headaches/migraines.

I am just totally confused - I have had blood tests done by my GP which looked for things like Iron deficiency and something to do with white and red blood cells but all of these came back as normal which is why she has been so reluctant to refer me for a Colonoscopy - she says I don't have any 'red flags' which may warrant concern for IBD. She is aware that I have family members who suffer from both Crohn's Disease and Ulcerative Colitis (although I am quite convinced I do not suffer from UC due to the Flexi-Sig coming back as normal).

I guess I just want to know if you guys think I am just so desperate for answers I am seeing something that isn't there or if I should trust my instincts and what they are telling me - that something isn't right in my body?

I feel like I have been suffering on my own for so many years now and the doctors just palm me off over and over again. I have suffered from depression and already lost one job due to the severity of my symptoms causing me to take so much time off (I generally suffer flare up's every few months with periods of remission in between).

I just cannot accept the diagnosis of IBS. I know people with IBS and they all seem to have such obvious triggers - diet, stress etc. I have tried every elimination diet including dairy (lactose), gluten, wheat, FODMAP etc but none had any effect whatsoever. I have tried alternative therapies such as meditation and hypnotherapy in case stress was the cause but again, no improvement at all.

I really am near the end of my tether and if this Colonoscopy comes back as clear I just don't know where I turn next I am sorry this is such a long post but it has been building up for years and I am so grateful to have an outlet.

Thanks everyone x

 

[bozzylozzy]

Hi sarah.. and welcome to the undiagnosed clan!

I am so glad you have managed to persuade your GP to order a colonoscopy.
You story is similar to mine.. im 25 and have had 3 hospital admissions in the last 2 yrs.
And im still being told I have IBS..
Hopefully you wont have to wait long for the scope.. mine took 3mths.

If this comes back clear - you can have a pill cam (to check small bowel) and MRI scan too.. plus faecal calprotectin test.
It is also worth while to have your vitamin levels checked such as B12, vitamin D and iron etc..

Do you have any other issues such as joint pain? (Because you could get referred to a rheumatologist who deal with IBD patients too.. this is how I started taking sulfasalazine.. and you could try a trial of prednisolone to see if your bowels react well to steroids)

Please keep us updated and sending big hugs your way :hug:

 

[Sarah_Louise]

Hi Bozzylozzy.

Thank you so much for your reply. It's so comforting to know I am not suffering through this alone and there are people who can relate and understand!

I have read a lot of threads that say the pill cam is usually highly successful in diagnosing inflammation but I'm dubious as to whether my GP would ever consider a referral for that considering how long it's taken her to refer me for a Colonoscopy. But I think I just have to keep pushing and not give up because I can't live like I have been anymore. I think the key with the GP is telling and not asking because that seems to give them an opportunity to palm it off and tell me it's nothing!

I do not have joint pain which is why I wonder if it is likely to be something like Crohn's. I know not everyone will suffer every symptom - I just don't know how many or which specific symptoms you would need for the doctors to start taking you seriously.

I would be quite keen to have a trial of steroids as I would be interested to see if my bowels did react well but again I'm not sure if the GP would allow this without a firm IBD diagnosis. However, I am not ready to give up this fight - especially as I now know there are others out there facing this same battle.

I will keep you posted on any developments and when I have a date for my Colonoscopy - hopefully the wait won't be too long!

I hope things move on for you too and please do keep me updated as well.

Big hugs too :hug:

 

[Ihurt]

I am so sorry you are suffering like this. I also have been sick for 2 years almost now with horrible intestinal pain to the point where I have to just literally sit with a heating pad all day. I am surprised that since there are other members of your family that Do have crohns or UC, that they would look more into this.

IBS seems to be easily thrown about as a diagnosis whenever someone presents with digestive issues it seems. I would ask your doctor if they could do the pill cam at the same time as the colonoscopy. I know some doctors require you to do a prep for the pill cam so I figure this way you only have to do 1 prep. It is just a thought. I am a bit pissed that my gastro did not offer this for me. I had a colonoscopy done back in April and it did not show anything. I also have other issues ( I get UTI's easily) so for me, Diarrhea is a huge cause of getting the UTI's. It would have been nice if my gastro would have suggested the pill cam at that time when I had already done the prep for the scope. That way I could have killed two birds with one stone sort of speak. Maybe you can suggest it to your doctor.

I am sorry you are suffering so bad, this is very unfair. My main symptom is very bad pain. I do not fit into the IBS criteria either. I do Not get relief after I have a BM, I actually feel worse. But my Gastro doc claims that IBS can be very severe for some people. I also have been on many diets and it does not help either. Not sure what to think.

I hope these tests can get you an answer and more importantly, some help so you can get some relief. Hang in there.

 

[bozzylozzy]

Im not pushing for anything at the moment.. because my bowels seem ok lately since we have changed the sulfasalazine dosage (it is for my joints primarily.. but my rheumy said if I do have IBD it should help it too) so now I just have a very occasional rush to the loo. Besides.. if gastroenterologists cant find anything when I was at my worst, they certainly wont find anything now lol!!
But if it flares up again.. I will push for more tests.

The colonoscopy is the best test for IBD if you have colon involvement.. and you said you have LRQ pain a sigmoidoscopy wouldnt help at all haha.. good luck! Just take it a step at a time

 

[Cat-a-Tonic]

Hi, welcome to the forum. You are definitely not alone!

A few things about your post jumped out at me. First, you do not get night sweats with IBS - night sweats typically indicate something like infection or inflammation. So definitely do keep fighting for answers. You don't get blood with IBS either. Is the blood bright red or darker/black/tarry? Is it mixed in with the stool or sort of on top of the stool? If it's bright red, it could be caused by something like hemorrhoids or a fissure. I'm presuming they checked you for things like that during the flexi-sig? Does the bleeding happen all the time or sporadically?

And you're right, not everyone fits every symptom, that's part of what makes IBD so hard to diagnose. During my first series of flares, I didn't bleed but did lose weight. Then I had a 2 year remission, now flaring again. This time around, I am bleeding but not losing weight! Go figure! So symptoms can vary not only from person to person, but from flare to flare too apparently.

Good luck with the colonoscopy. When you have it, make sure your doctor knows to take LOTS of biopsies! Sometimes things look fine visually but will make themselves known on biopsy - both Crohn's and Microscopic colitis can be like that. Also, both Crohn's and MC have "skip patterns" meaning the inflammation is patchy, so particularly with MC, they have to basically luck into biopsying the right spots in order to find it. The more biopsies they take, the better the odds are of them finding something. And make sure they biopsy the Terminal Ileum (the last part of the small intestine just before it joins up with the colon - that spot can be reached by the colonoscopy, and it's the spot where Crohn's most often manifests - and it's in the lower-right, where you described your pain as being).

One more thing, can you switch GPs? Yours sounds like they're not taking you very seriously. I would look for a new GP and then ask them for a referral to a GI.

 

[UnXmas]

Hi, you're definitely not the only one who feels they're being dismissed with IBS. Unfortunately, the only way doctors will really change this assessment is if you have test results come back abnormal.

The "red flag" symptoms which would prompt a doctor to reassess the IBS diagnosis are unintentional weight loss, fevers and passing blood. The number of diarrhoea episodes you're having also seems way too many for IBS.

Personally, I've found it doesn't work in my favour to push doctors for more tests or insist there's something very wrong with me. A lot of members here probably disagree with me on this, and will say you should advocate for yourself and research which tests to ask your doctors for, but I've found that really most doctors will do the tests they think necessary and do not like a patient making their own suggestions. I found that insisting there was something very wrong with me just led to doctors suspecting I was a hypochondriac.

I'm sorry I don't have many better suggestions on how to deal with doctors. The things that got the seriousness of my various medical conditions recognised and led to diagnoses were 1. symptoms getting a lot worse and the development of symptoms that simply couldn't be dismissed. and 2. finding the right doctors. If you think a doctor isn't listening to you or taking you seriously, don't take it personally, move on, and ask for a second (or third, fourth, fifth) opinion until you find one who will help you.

Don't have too high expectations for getting a diagnosis. It can take many years to diagnosing digestive symptoms and there are many many possible causes for your symptoms. The thing that helped me the most in terms of coping with my illnesses was accepting that I was going to be sick long term and accepting that I might not ever be diagnosed. Ironically, as soon as I started being ok with that, I did get diagnosed - it turned out I had more than one condition and extremely atypical symptoms and that one of my medical conditions was extremely rare. I can't criticise the doctors for not knowing what was wrong with me sooner, but I can (and do!) criticise them for telling me it was IBS or mental illness rather than admitting that they didn't know the diagnosis.

There are a lot of people here undiagnosed and whatever your diagnosis turns out to be, I hope you'll find support here while you're going through the diagnostic process. Keep trying with the doctors, but don't let this take over your life - which it can do far too easily. Whatever is causing your symptoms, anything that you can do to focus on areas of your life which have nothing to do with being ill will benefit you far more than spending too much emotional energy on trying to get doctors to take you seriously. I know it can be really difficult to do this, but I've honestly found getting diagnosed to be an anti-climax as it didn't really bring about any changes to my life. I've been so much happier since I've revised my expectations about getting diagnosed and getting better.

 

[Cat-a-Tonic]

I have to respectfully disagree with UnXmas - I've found that the only way I get anywhere with my doctors is if I make myself a pain in the butt to them. If I'm a quiet little compliant patient and don't stand up for myself, it's so easy for them to shuffle me off and forget about me. If I stand up and say, this is what I need, I want to try this medication or have this test done, and here are my reasons why, and you can't send me away until we've discussed it - then I find that stuff gets done and they don't forget about me so easily. I refuse to suffer in silence while my doctors ignore me. I'm a meek, shy, quiet, very socially awkward person by nature, but being ill and undiagnosed has forced me to become a lot bolder and more assertive with my doctors. It's been quite empowering actually! I'm sure my GI thinks I'm annoying but I don't care at all what he thinks, the important thing is that I get the appropriate care that I feel I need. As long as you have solid reasons for asking for what you want, they shouldn't write you off as being a hypochondriac. If they do, they're crummy doctors and you should find better ones who take you seriously.

 

[Karma]

Hi Sarah,

I'd be pushing for a faecal calprotectin test. I think it's being looked into for differentiating IBD and IBS. Maybe your GP could order one?

Hang in there, it took me a while to get diagnosed!

 

[Niks]

Hi Sarah

I agree with Cat. Keep fighting! I think if doctors don't hear from you they assume all is okay! Clearly it isn't.

You sound so very similar to my daughter. She just gets sicker and still gets okay blood results so IBS is their diagnosis. SOOOO frustrating. I wish they lived one day with her to see what she goes through and then tell her she has IBS!

Good luck. I really hope you get some answers soon xx

 

[Tired]

I agree with UnXmas. A good GI usually knows his work. IBS is much more common than Crohn's, so there is more chances that one has that then Crohn's.

Usually a blood work will come abnormal, either Anemia, SED, CRP, high platelets, high neutrophils etc. If everything comes normal, it is still possible. Then there is colonoscopy, if that comes normal with normal blood work, usually it is sufficient to rule out Crohn's, as the terminal Ileum can be viewed with a colonoscopy. Most cases are either in the terminal Ileum or/and colon.

Then if the GI suspect still something, not necessarly Crohn's, there are many other tests to run. But in the presence of normal blood work with a normal colonoscopy, Crohn's would be uncommon. Particularly when the patient has a lot of pain in the colon area and that nothing shows in the colonoscopy.

More test that is done which come back normal, more chances there is that other tests will come back normal.

 

[Tired]

Also, flares in Crohn's usually require treatment to induce remission. While remission can happen by itself, it is not common, at least not the rule. So when someone has an undiagnosed case in which flares and remissions alternate without treatment, it is more possibly IBS than Crohn's.

 

[iriechic]

Hi Sarah Louise,

First of all, I'm sorry it's taken your physicians so long to get you seen for important tests...that doesn't seem right. I'd expect with your symptoms they'd have given you a colonoscopy with many (approximately 4 in different areas) biopsies by now. I feel for you and the pain that you've endured. I can sympathize. I went undiagnosed for many years. Many doctors blew it off as IBS-D or nervous stomach. Finally, a 3rd doc decided it would be wise to test for celiac and sure enough it was positive. Unfortunately, going gluten free wasn't the answer to my ongoing D. I remain GF because of celiac. In addition to that I have microscopic colitis. This form of colitis is less obvious than UC or crohn's because it cannot be seen with the naked eye. Biopsies must be taken and examined under the microscope to make a diagnosis. I would encourage you to keep pushing your doctors for tests because it doesn't seem right that you should have such symptoms without more answers. Also, might be worth testing for GI infections, like C.Diff, just to rule them out.
Best wishes!