Crohn's Disease Forum » Support Forum » Undiagnosed Club » Trying to get a diagnosis

10-21-2011, 07:39 PM   #1
Join Date: Oct 2011
Trying to get a diagnosis

Hello Everyone

I've been reading around the forum and thought I'd introduce myself.

I'm Lee, I'm a 36 year old....I want to put girl, but at my age I don't think I can get away with it, so woman will have to do.

I've always had a bit of a sensitive stomach, even as a kid, if I got anxious or nervous, or went into bookstores (I know, really weird, also libraries), I'd get diarrhea with urgency and have to dash to the nearest loo. It wasn't a big problem, I didn't have pain, but I did know where all the public toilets were in town!

When I was 20, I went to Turkey and got a nasty stomach bug causing really bad diarrhea that didn't go away for months. Eventually it calmed a bit, but I was left with having flares of what my doctor told me was IBS - he never did any tests or anything apart from a stool sample. The flares were sometimes pretty bad, but I could work with them and rarely had any time off.

My health deteriorated from other causes a few years ago - fibromyalgia, interstitial cystitis, severe coccyx pain, joint pains, depression. I still had the flares of diarrhea, they were a bit more frequent.

throughout the flares I controlled it with loperamide - I must have taken bucket loads over the last 16 years.

About a year ago I had a flare up of the diarrhea that was different. I had lots of pain and nausea with it, and also blood in the pan (which I'm not sure isn't hemorrhoids, so I won't worry too much about that), and the diarrhea was every day unless I stopped eating. this lasted 3 months and then eased off a little (diarrhea 5 days a week instead of 7), thanks to trying mebeverine - but this didn't work for long and soon I was into another severe flare which again lasted months. I tried calcium carbonate supplements, which helped a bit, initially and then stopped helping.

Here I am now, my third severe flare up in a year. I am down to just eating one meal a day of plain rice because I feel so bad when I eat, the diarrhea is explosive and burns and the loperamide isn't working at the moment.

I've been to the GP a few times about this in the last year, and apart from doing a stool sample and a blood test to check for thyroid issues last year, they haven't really done anything - a prescription for 30 loperamide a month (I get through 50 a week), and some rehydration sachets. I did have an upper GI endoscopy last year (for swallowing problems and reflux) but it didn't show anything.

I have more blood tests in a week, and then I'm ging back to the GP to try and get some answers, or a referral, or something.

I can't live like this anymore. Its so bad that I've had multiple episodes of incontinence in the last month (getting 10 feet to an empty bathroom), the urgency is that bad. I rarely leave the house and I can't go out unless I fast for 24 hours before hand and take loperamide in advance, because I know I'd never make it to the bathroom if the urgency came.

My husband jokes about getting me nappies and a commode, but its not seeming so funny now. Even he gets a bit perplexed when I have to dash to the loo while watching tv, then finish, wash my hands, open the bathroom door, then have to go back in to go again, then make it back to the sofa and then have to turn around and go back a third time.

I eat 7 or 8 hours before going to bed and stay up if I feel in any way dodgy, as my toilet is downstairs - and with the help of the loperamide and eating early I can usually limit night time problems to pain and nausea - except at the moment when not eating at all is preferable.

I don't know if I do have crohns or IBD, but I can't see that this is just IBS. I lose weight when I have a flare (and eat to make up for it when I don't).

I'm determined to get some answers, a diagnosis and some sort of treatment.

This can't be the rest of my life, can it, chained to the toilet in my house?

There must be some way to treat this?

Thanks in advance for reading, sorry if TMI.
10-21-2011, 09:50 PM   #2
Crohn's 35
Inactive Account
Join Date: Oct 2009
Hi there welcome to the forum. First of all using loperamide long term is not a good idea, it is best to avoid it. Having Questran (cholestyramine) from your doctor can really help the diahreah. IBS is not a disease and therefore you shouldn't really be bleeding. Having diahreah will really make you lose alot of nutrients and also sounds like you could have narrowing. A colonoscopy or barium follow through will show narrowing or scar tissue and inflammation. You need to get the diagnosis and get treatment as soon as you can.

Hope you get answers soon, glad you found us, Keep us posted.
10-22-2011, 01:16 AM   #3
Senior Member
25times's Avatar
Join Date: Apr 2011
Location: calgay, Alberta
From what you said in your post, you've got the right state of mind to get a diagnosis. Like, enough is enough, this isn't normal, it's more than IBS. That's good. I went for such a long time being sick and not knowing why, because doctors weren't doing enough to find out what's wrong.
I have no idea how you can get diagnosed. Nothing seems to work, unless you're practically on your deathbed (here, anyways.)
Even though I've been diagnosed and "treated" I'm still having really bad symptoms. The same ones that you've described, plus a little more. It's SO frustrating. I hate that people have to suffer like crazy with this disease. I hate it.
All I can really tell you is push, push, PUSH your doctor for tests like blood, CT scan, ultrasound and colonoscopy. Ask for all the results in full, not just what they "think" you need to know. If it's not crohns, keep pushing. It has to be something. You don't really bleed or lose weight with IBS. Good luck
Officially in remission from crohns.
Rheumatoid arthitis
Ovarian tumor (getting removed!)
Possible multiple sclerosis diagnosis

Remicade (With Benadryl)
Tylenol 4
10-22-2011, 06:39 AM   #4
Join Date: Oct 2011
Thanks for the replies, I really appreciate the support.

I realise loperamide is not so good to take so much, but I've been at a loss as to what else to do, its been the only thing between me and 20+ times a day in the toilet. I'll ask my GP for Questran - is that cholestyramine? But I doubt she's gong to give it me - maybe if I get to see a specialist. I have tried calcium carbonate which is also supposed to be bile salt binding, but though it helped to start, it doesn't help at all now.

I've tried an experiment yeserday of just eating plain white rice once a day, to see if the helps - the start of an elimination diet (it was the first thing I'd eaten in 24 hours), but in the early hours of the morning, pain, nausea and dashing to the loo.

After looking around the forum, and all of the excellent information on offer, I've started a food/stool chart so that I can show the doctor the depth of the problem - though I suppose to really do that I should eat more and not take the loperamide, which I'm really nervous about, so I'm not sure.

What would you all advise?
10-22-2011, 08:05 AM   #5
Crohn's 35
Inactive Account
Join Date: Oct 2009
Just to let you know the loperamide can cause worse problems for your bowels and if you ask for Questran I can't see why she wouldnt give it to you. OTC are not monitored or FDA approved for some medicines but we take them anyways.

Showing a diary will help, but in the meantime, eat banana's, rice, potatoes, pasta, toast...and applesauce, it can help slow down the bowels somewhat. I eat large flaked oatmeal (rice milk, no dairy) and it helps to bulk and soothe the intestines. Most people dont like oatmeal which is too bad, it can help.

I rarely take Lopermide (imodium) because I have been a crohnie a long time and don't want any more complications than I already have. When do you see your doctor again?
10-22-2011, 09:10 AM   #6
Join Date: Oct 2011
Hi Pen. thanks for taking the time to post.

I'll try and stay off of the loperamide as much as possible.

I'm in the UK and don't think that questran or cholestyramine is routinely prescribed by GP's and I suspect she may be reluctant from past experience with asking to try different meds.

I appreciate the advice on foods to eat, I have been eating rice, which slows down the process but just makes the diarrhea 5 hours later, I still get pain and nausea - in fact the pain seemed worse after the rice. I can't eats oats or gluten due to intolerance (I get a severe reaction from oats). I'm also supposed to be eating low carb due to PCOS and insulin resistance - I guess I need to pick my priorities.

Do the rice and potatoes have to be eaten plain, or can things be added?

I should be seeing the doc next week sometime. They've suspended booked appts and we just have to ring up on the day and try to get in. The blood tests are scheduled for 31st.

I realise this is likely to be a long process. Luckily I have quite a bit of weight available to lose, so the weight loss won't make me underweight (started weighing 4 days ago and have lost 7lb in 4 days), though if this carries on I'm concerned about getting adequate vitamins, minerals, protein and fats over the long term. I take supplements (b complex, d3, potassium etc) but who knows how much those of us with these issues actually absorb.


10-23-2011, 09:07 AM   #7
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littlemissh's Avatar
Join Date: Dec 2010
Location: United Kingdom

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Hi Lee,
Just putting my 2 pennieth in. Have you never had a colonoscopy?
Anyone with diarrhoea lasting more than 6 weeks should have a colonoscopy at the very least.
I would push for a gastro referral. Even if it is IBS then with symptoms that are stopping you living your life you should be seeing a gastroenterologist.
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
10-23-2011, 10:38 AM   #8
Join Date: Oct 2011
Hi littlemissh, thanks for the thoughts.

No I haven't had a colonoscopy, or ever been referred to a gastroenterologist. I'm hoping that maybe I can push for this - though I'm rather anxious about having a colonoscopy after a bad endoscopy experience.

I should also explain that because I'm not skin and bones, doctors don't really pay much attention and take me less seriously, though my weight has been gradually drifting down this past year - but when you start from being overweight, doctor's think this is good, and not a cause for concern when its not deliberate.

I've started a low residue diet - only eaten low residue food for 48 hours and this has helped the symptoms some. If I hadn't come on this forum I wouldn't have known about it, as every GP I've seen pushes high fibre, low fat at me. So thanks, I've learned more useful things here, than 16 years of doctor visits.

10-23-2011, 10:50 AM   #9
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Join Date: Dec 2010
Location: United Kingdom

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Make an apointment to see your gp, just say that you have had persistant diarrhoea, unintentional weight loss and would like a referral to a gastro. If he/she says that it is probably IBS ,then just reply that it may be so but you would like to know for sure and if ibs then would like a specialists advice on diet and treatment.

There are IBS specific diets- soluble fibre only, limiting fruit and veg portions etc etc. A gastro can refer you to a specialist dietician...if he feels IBS is what it is - but I bet you he will do some tests first. Colonoscopy is ofetn easier than upper endoscopy by the way...more sedation etc.

Either way a referral is appropriate and I don't think your GP would mind you asking...probably never crossed their mind...should have done but whats done is done.
10-24-2011, 06:12 AM   #10
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Join Date: Apr 2010
Location: Charleston, South Carolina

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Hi, Lee, and welcome to our club. I agree with Littlemissh, my GI was able to treat me very effectively even though he never found IBD. And I was also terrified of the idea of a colonoscopy but it's really not so bad. And if it means answers and treatment, then it would be so worth it. My GI told me also that ibs is a diagnosis of exclusion so certain things have to be ruled out before anyone can make that call. He was not willing to call it anything before several tests.
11-16-2012, 06:20 PM   #11
Join Date: Oct 2011
Hi Everyone, thought I'd update this post with my progress so far - which is zero.

I was referred to a GI doc who spent 5 minutes asking me questions, mumbled something about bacterial overgrowth and referred me for a sigmoidoscopy. When I had to call to reschedule the next appt with the GI due to Diarrhea so severe I couldn't leave the house to attend - he promptly discharged me from his service saying there was not much he could do. He did no blood or stool tests and an inexperienced nurse did the sigmoidoscopy and only got halfway up the sigmoid colon which showed excessive muscous and no haemorrhoids.

Since then I gave up for a while and just chained myself to the toilet and rarely left the house. Stomach pain is now nearly constant, right sided (belly button down) and most severe near my appendix.

So I went back to GP today with a list of demands and wanting a proper colonoscopy. He agreed to do more bloods and some stool tests and refer me back to the GI, but was singing his praises saying he never misses a diagnosis, and as I'm obese my CRP of 23 doesn't mean much and my ESR is only 13.

Still struggling, and feel I really need support in trying to get some answers. I got a thorough telling off for reading things on the internet and questioning my doctors' judgement. Apparently I'm just supposed to accept it is nothing more than IBS without even tests showing that.
09-02-2013, 09:22 AM   #12
Join Date: Oct 2011
Another update.

Was recently hospitalised for right lower quadrant pain, fever and high crp. Ultrasound showed an enlarged gallbladder, but no other tests done. was given IV antibiotics and now at home on oral antibiotics. Should have had a CT scan but this wasn't done. Had a colonoscopy a few months ago which was clear, but as my pain is above the small intestine, I was expecting that. CRP got as high as 276, which indicates a severe inflammatory process. Prior to hospitalisation had been having episodes that felt like an obstruction of some kind - pain, nausea, high fever, vomiting from small intestine, tachycardia, no bowel movements or passing wind - symptoms only improved with fasting which eventually led to bowels starting moving again.

Further GI appt on 20th September, but not sure where to go from here to get a diagnosis - doc still thinks IBS.

help and comments really appreciated.
09-02-2013, 09:55 AM   #13
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Location: Northern Ireland

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We have something in common. My problem started after getting a bug in Turkey. Ive every test under the sun and symptoms have never gone away . I now have constant LRQ or pain in the appendix area and to the right side of my naval all the time . Plus the constant running to the toilet .
I can tell you this is a long road and you do have to take this in hand yourself . I have basically changed my daily routine around my work and /or activities that i have to do . Everything is based around when |i eat and where the toilets are . ( everything ) I have to to say that unfortunatley i have got used to this and come to except that i will always be this way . Some days are better than others .
Im a more positive person now than I was when i was constantly running to the doctors only to be disappointed or being dismissed.
What Im trying to say is be positive and in the mean time except the way things are . Work around it and dont expect others to understand because they cant possibly.
Do keep pursuing the doctors for an answer and at least a good maintanence drugs like asacol. This has helped me balance things somewhat.
Stay calm and be positive . You know how your day goes and how your body reacts so work with it as much as you can .

DX March 2012 IBD - Inflammation of the Terminal Ileum with inflammed appendix
Asacol 800mg 4 x day
Amitriptyline 50mg
Omeprazole 20 mg when needed.
09-02-2013, 12:21 PM   #14
Join Date: Oct 2011
Thanks, Peter for the response.

I had hoped that now I've had really high CRP levels, that my GI doc might actually take me more seriously.
09-02-2013, 07:08 PM   #15
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Location: St. Petersburg, Florida

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Hi Leemack,

Your symptoms sound like mine. I know what a pain it is to revolve your life around what foods to eat and where the bathrooms are! I'm still working on getting proper treatment. What PVail says rings so true, "try to stay positive". That has been difficult for me to do but I need to practice it more each day, so that I can feel hopeful and not hopeless. There have to be answers out there for us. Keep your chin up and don't give up! I literally just started new medicine last week but haven't noticed changes yet. My GI says "it's a marathon". I prefer to sprint!
09-03-2013, 07:54 AM   #16
Join Date: Oct 2011
Just had the GP call with the most recent blood work. CRP has come down to 28, (was at 276 last week) with antibiotics, but ESR has increased to 48.

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