• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Latest pearls of wisdom from GI.

Well today went like all my other appointments, such a dissapointment :(

Ultrasound of gallbladder, kidneys and liver was normal.

CT scan of abdomen, chest and pelvis was normal- gutted, I really thought that would find it. :confused2:

When I brought up the black tarry stools and blood in stool on tp I was told one or two incidents of blood was normal and nothing to worry about :eek:

Stopping all meds today which is great since they were not working. Also told to stop multivitamin.

He suggested I lose 35kg before I see him next :eek: I know my weight is an issue but I can hardly go jogging round the block right now. Why I haven't lost any is a mystery to me let me tell you since I am barely eating and have constant D.

I asked again about the Pill Cam but the only way PCT will approve funding is if I am aneamic through a suspected small bowel bleed or colonoscopy biopsies had come back abnornmal.

I pressed the issue, would an iron supplement mask a bleed, he said probably not, but said he would be willing to do FBC again. I also had to push for the CRP to be done again, along with 2 other tests Rheumy wanted done. No stool sample requested- thinking of getting GP to do one for me.

He asked if I wanted an upper endoscopy, I said not really but think it should be done! Min 6 week wait. Will not diagnose CD even if they find ulcers-"anyone can have ulcers".Bowel bacteria test is in 2 weeks.

Saying I need to go away and accept everything is normal and he says i'm fine, apparently that will heal me and things will go away! And since I didn't cry this time (decided he is useless so no point in me getting upset) I seemed alot better!

Apparently I should accept the high CRP has no cause and is nothing to worry about.

Also referring me to the pain management clinic which even though there will be a long wait, is good. And sending me to St Guys in London to see a special dietician, he remembers a case at conference similar to mine which was solved by a special diet.

I am looking into having a Pill Cam done on a private basis but doubt I can afford it.

Meanwhile that is the last time I am seeing him. When we meet with the complaints service (in progress still), I will be asking to see another GI. As well as an independent review of my case by someone outside there, and special attention paid to the CT scan, as I can't believe that was normal.

No follow up appointment but he will "keep an eye on things".
 

Cat-a-Tonic

Super Moderator
Oh Star, you poor dear, I'm so sorry that you've been through yet more disappointment. I'm glad that you're not going to see this GI anymore, he sounds like a real piece of work! He really told you that having blood in your stool isn't anything to worry about?? What an idiot! I'm glad you're moving forward with the complaint and independent review, I hope that is helpful. Good luck with the blood tests and everything else that you've got coming up.

I hope the new GI is much better and doesn't ignore your CRP and blood and pain and all the other symptoms and abnormal results! And, good for you for not crying at your appointment. I seem to get so worked up about appointments that I have cried at pretty much every GI appointment I've had. Maybe the new GI will be more interested in getting you the pill cam?

I hope the upper endoscopy goes well too. My upper endoscopy was normal but I was told that it is the "gold standard" test for diagnosing or ruling out celiac disease, so even though it was normal at least I got to rule something out.
 
This is awful - what a terrible man. Yet again someone with serious complaints get waived away with 'it's nothing, psychosomatic etc. etc.' I wish physicions would stop doing this and looking at any patient as if they are ready for a nervous breakdown. Change him and keep a diary of your problems. This might prove to the next GI that something is going on and that the only reason that you're miserable and/or anxious is that you know your body and that you know something's amiss. Good luck!
 

allieinwonder

Moderator
Im so sorry your appoitment went like that star! He sounds inconsiderate, rude, and downright mean. I am glad you are going to another GI though! I really hope that path gets you the answers you need.

I was told the same thing with the pill cam, that i have to show signs of anemia first. I really hope the blood tests you had show why you are feeling so bad!

Im glad you didnt cry, crying just sucks in front of a doctor. :(
 
Man. What an idiot. I'm sorry Star. Most Drs are just infuriating, and don't seem to care at all. :( I hope you find a better one.
 
Thanks so much guys. Yes he told me blood was nothing to worry about, apparently he gets it from time to time! And it's not piles or hemmeroids like he tried to hint- I was quite clear that it was IN the poo and not ON the paper.

I'll be seeing someone else at the same Hospital, even though at a meeting of all the GI staff awhile ago they decided it was IBS, because they don't want to admit their mistake. But I have to see someone and as long as it isn't him...

I will see GP soon and discuss a second opinion referral, it is something I really want but of course I keep hoping something will turn up you know.

On the subject of a diary, since my initial problems with Rheumatology early last year, I decided to keep going with the diary, it's running at 35 pages on Word! All the screw-up's, symptoms etc, it's all there :voodoo:

Got the first Pill Cam quote and it's waaaay more than I thought, not near anything I can afford. Also looked up my blood tests. INR which is for bleeding disorders and one I couldn't decipher so can't find. Not sure if GI or Rheumy ordered the first. Two faced if it was GI and smart thinking if it was Rheumy as he doesn't know about blood unless GI told him.

I am just so dissapointed now. But going to try and get out Saturday afternoon to a naming ceremony of my friend's son. The prospect of getting dressed/made up is just so nice, been so long.
 
Last edited:

Cat-a-Tonic

Super Moderator
Star, I hope you have a good time on Saturday. Hopefully that will lift your spirits. And your GI really said that he gets blood in his stool as well? If so then maybe he's in denial about your illness because he's also in denial about HIS illness!! He must know that it's really not normal. How odd!
 
Hi Star girl,

Sorry to hear you're having such a rough time! I hope that your second opinion gives you some answers!!

You mentioned black stools and that you're on iron supplements, to put your mind at rest, iron tablets do that to your poo.... I was anaemic a few years ago and my poo was horrible (before all the crohns stuff began) - really black and smelly and hard to pass..... hope that reassures you a little?

What might reassure you more is an endoscopy - have you asked your GI for one? Talk to him about it cos he is the expert, but it tends to be UPPER gastro bleeding that causes black stools rather than lower bleeding, it also throws your kidney blood results off cos of the digestion of blood (raised urea)... so an endoscopy might just provide a bit of extra reassurance for you...... Talk to your GI or if you dont like him, your GP......... they know far better than I do!!

Hope you're feeling well today!

xxx
 
Thanks lulu :) Had a normal colonoscopy in December last year and got an upper one in the piepline.

Thanks for the info re iron tablets, I was taking a multivitamin with iron for a long time, but I stopped around 6 weeks ago and the black tarry stools occured after that (for scope prep you have to stop them 5 days ahead so must take that long to get out of your system). It was just like a normal poo with a seam of black tarry stuff running through. And the spots of dark red blood I found on tp were in poo, unlike when I get a cut down there, when it's bright red, on it's own and it streaks.

Yes Cat that is a direct quote!
 
Good an upper one is the way forward then! Glad you're getting it sorted.........

Have you been tested for reasons for your weight if you dont mind me asking? Im really not being rude, please dont think I am..... it just seems odd that you've not lost any weight despite barely eating and pooing all the time!! I've been flaring for 3 weeks currently and I'm the same barley eating and going a lot and I've dropped a dress size.... dont really wanna lose much more myself!! It jsut strikes me as odd.... does ur GP know this?

xxxx
 

Terriernut

Moderator
If all these tests are normal, and you are still having these problems, I think perhaps a GI isnt your best bet. Something else is going on. Have you for instance been tested for allergies to certain foods? Wheat for instance, or milk? How about endometriosis? Can cause a raised CRP. My CRP goes up with my hayfever. Your CRP isnt screamingly high though. It's a continous number isnt it? I think it's something else causing it.

Also, if you are overweight and not eating and having 'D', that is a strange combination.

I'm not saying people with IBD arent ever overweight. But after a period of time it realy does take a toll and we start dropping regardless. Probably malabsortion. I Dunno!!!??? I'm a whopping 7 stone and eat like a horse. (wouldnt care if I had my tits back!)

What I'm saying is, you keep going down the crohns or UC route and maybe it's something else entirely?

Misty
 
Not everyone with crohns has a raised CRP tho, mine's never very high, only mildly.... but my ALT on the other hand rockets during a flare (its another acute phase protein according to my consultants)......

But terriernut overall i agree with your suggestion.... I think stargirl you should continue to persue your diagnosis for sure, and obv with diarrhoea then defo exhaust all your gastro options, but also open your mind to the possibility of other issues going on?? You need to speak to your GP i think, see what he/she thinks is going on? It's clear you're unwell and need help, talk to your doc about all your options!

xxxxxxx
 

Terriernut

Moderator
Lulu, our Welshbird always has a normal CRP, so you're right about that! (Andrea is special though, that's why we love her!)

When a flare occurs most of us have a whonking great high CRP though. When they wheeled me into hospital last time, my CRP was over 180. All the markers were thru the roof.

A steady CRP with Starrrs numbers suggest something else though. Could also be arthritis??

Misty
 
TBH I wouldnt like to hazard a guess whats going on with star girl...... she's clearly a v complicated case and even specialists are baffled. It's clearly something tho.... I wish her all the luck getting to the bottom of it, whether it be IBD, IBS or something else!!

Yeah my CRP doesnt shoot up like yours does (sadly, would make life more clear and less complicated), like I said for me it's my ALT, that tripled on my last admission!! My folate is low too, been told im not absorbing nutrients like I should be.... *sigh*

xxx
 

Crohn's Mom

Moderator
Hi Stargirl :)

Just curious...have you had your thyroid levels checked recently ?

I sure hope you get whatever is going on with your health sorted out soon! Best of luck :)
 
Have to say I agree it might be time to be looking for other causes than your gi tract that is making you feel unwell. It just doesn't seem quite right that you can be eating barely nothing and have severe diarrhoea yet remain overweight/lose no weight. You have mentioned before you want a pillcam because some on the forum have been diagnosed with this and other xray tests/scopes normal.
As you probably know I am one of those who was diagnosed with a pillcam while my other X-ray type tests/upper scopes/colonoscopies were normal and normal CRP ...but.. I lost 4 stone in weight, was vomiting, had major bleeds with lots of tarry stool that dropped my haemoglobin from 152 to 72 in a very short time, also raised platelets and abnormal liver tests...so there was clearly a gi problem going on and it was a matter of finding it.
It may be time to take a step back and reevaluate the benefits of seeking further gi opinions...your case was discussed by the multidisciplinary team wasn't it...so there would have been several gastro/surgical/radiology opinions there and yet they feel it's not gi.
Just a thought, my twopenneth, time to rethink your plan perhaps and reduce your stress at continuing the 'fight' ?
 
Alot of other things have been looked into and ruled out, Cushings, Lupus and Addisions (although the latter was ruled out after many many blood/ urine cortisol levels. Going to ask Rheumy for the proper test) and a bunch of other stuff I don't remember.

I had a WBC scan last year which did find inflammation in my bowels. This was accepted as positive by 3 departments for over a year. Then, once 2 other tests came back normal the GI's and 2 radioligists decided it wasn't postive after all. This handily for them led back to the IBS diagnosis I got from them in 2007 (after one flexi-sig, nothing else, and yes CRP was up then too). 2 weeks before that decison the 2 departments discussed scanning me again. But it was ruled out as an uneccessary radiation risk- not because they felt it was negative!

On the subject of CRP, yes I have seen some big numbers of that on here. But I also see people with totally normal bloods and are then diagnosed with CD. So, there is no hard and fast rule it seems.

I feel i'm losing weight but everytime I am weighed up the Hospital (no scales at home) annoyingly I always am on my period, bad timing as I retain alot of water at that time of the month! Certainly my clothes are getting looser and looser. Also I have been on meds for GI issues since 2007, low dose anti depressants and lately an SSRI. Now I am stopping all of them I think I may seem some more weight come off.

Had thyroid tested loads, especially over the last year. The only thing that comes back abnormal is CRP. And Vitamin D came back low last year. I did have some new ones done Wednesday though.

I've thought alot about whether it could be something other than CD. But I have so many of the symptoms and it seems the best fit. Nocturnal D (the worst attacks end up with me stripping off in the bathroom, window wide open in winter, because I am sweating so much), horrid mouth ulcers, joint pain, abdominal pain that never seems to go away, passing blood now, etc.

Rheumy has said if all tests come back clear then he wants me to consider a trial of immuno suppressants/ steroids. But, neither I nor my family can live without knowing what is wrong with me. And if I need state support for a while longer they will laugh me off the phone if I try to continue my claim with no diagnosis these days!

I have been through so much I would love to throw my hands up in the air and say hey it's bad IBS. But there is too much doubt and the fact that none of the IBS drugs tried recently worked at all. And I won't be able to live a life again until they sort out what is wrong with me. I can hardly live anything resembling a normal life at the moment, it is just not possible even with the best will in the world.

Still, there is the upper endoscopy coming up. It's also worth noting my CT was a standard one with contrast dye, not a bowel specific one where you get special prep. As Rheumy ordered it to look at chest, pelvis and abdomen, which was fine.

I appreciate where you are all coming from, I really do. I think if I had a more open-minded GI I would be getting somewhere, even if i'm not quite sure in which direction. But I see alot of people here that remain undiagnosed for a long time with lots of normal tests.

I am certainly seeing my GP at some point to have my stool tested for blood. Had one test in 2006 but not sure what they looked for. And one a few years later after a bad bout of flu when they thought I had norovirus. So as far as I am aware, it has never been tested for blood, which is one of the first things GI should have done in 2007 & now in my view, given my symptoms.
 
It really does sound like you're in a difficult place star girl.... and a lot of your symptoms sound like mine, and Im sure sound like a lot of people's on here. Very clearly there is something wrong that you need to get to the bottom of as passing blood and nocturnal diarrhoea is not normal!

I'm not saying you have IBS, so dont worry, but just on a general drug information note, a lot of IBS sufferers find the drugs don't work for them.... this is what I've meant when I've said on other threads that I think IBS is a worse diagnosis than IBD.... at least IBD is treatable even tho it's horrible, so many IBS sufferers just seem to have to suffer! AWFUL!!

I think a stool test is a good idea and I think you certainly need some help from whatever specialty as you are clearly unwell.

I wish you all the best in getting to the bottom of this, whether it be IBD or not!!

xxxxx
 

allieinwonder

Moderator
Yeah, I agree with others, maybe it is autoimmune but not IBD? As you know thats where I'm looking now. Addisons specifically. You don't have to accept the IBS diagnosis. I keep being told its severe IBS....IBS would not cause the weight loss I am going through, the blacking out, the vomiting, and pain that needs narcotic pain meds (even my GI knows I need the narcotics, I got another rx for them on Monday after he told me that was all he could do for the pain).

Here is a list of autoimmune diseases: http://en.wikipedia.org/wiki/Autoimmune_disease

Also, I bought a book last weekend that you might be interested in reading. Its called "Whats Wrong with me?" (I literally googled "whats wrong with me" when I was very upset and this came up, so I bought it for kindle for my iphone). It basically is a book for people with illnesses doctors can't figure out. One thing they talk about a lot is to keep an open mind. thats why I've accepted this isn't IBD, but it isn't IBS either (or something on top of the IBS I've had since I was 15). Here is a link for it: http://www.amazon.com/Frustrated-Patients-Getting-Accurate-Diagnosis/dp/0071435069

Just to let others know on this thread: I have had all tests for IBD except pill cam as well. ALL normal, even my CRP. But I am still very sick. My GI has given up and has suggested I get tested for other autoimmune diseases (he mentioned lupus twice during my appointment).
 
Thanks everyone. If the WBC scan had not come back positive (despite what was decided) I would be much more open to another auto-immune cause. But it didn't and that is my sticking point right now.

I had 3 lots of pictures for that scan. The third time the machine went much, much closer to my belly, the tech looked up my notes on the computer, and told me consultant would be in touch. I knew something had been found and I was right. As i said 3 departments were satisfied it was positive for over a year. But once 2 other tests came back normal, what do you know they change one thing that wasn't normal, which luckily for them fits neatly into the IBS theory.

Also seriously discussed giving me another scan 2 weeks before this decision as I said. It was not ruled out because they felt it was negative!

My own GI performed the colonoscopy and in his written report he mentions the positive scan. Minds were only changed after normal tests, so it was not judged on it's own merits, when it was declared positive.

It's a mess and no mistake!
 
It sounds a mess! Well you must be strong to have gotten this far, dont give up now! Have they mentioned what else other than IBD could cause the inflammation of your bowel on the scan?! It must be due to SOMETHING!

xxx
 
Well the only thing that has been suggested is that I could have a high level of bacteria which can cause inflammation apparently. But my GI turned round this week and said he expected the result to be normal, which is typical of him and since the WBC scan result was changed not terribly surprising. I said if he was willing to ignore blood also I would change GI's and that is just what I am going to do.

I have to say the desire to be proved right is sometimes the only thing keeping me going. But lately I have begun to wonder whether they/we will ever get to the bottom of it. Just got to keep going I guess.
 

DustyKat

Super Moderator
Sarah's bloods NEVER reflected what was happening with her. She had a normal CRP and just about everything else right up until a day before emergency surgery. And although Sarah never had any scopes her CT scans, X rays and ultrasounds were grossly normal, as far as her bowel was concerned, as well and this was within one week of the surgery.

Matt was totally the opposite, so sister and brother with two completely opposing results when it came to tests.

Since they won't do a pill cam I wonder if they will come at CT Enterography. This test is replacing SBFT and in Matt's case it easily demonstrated the affected area of small bowel. Granted the GI identified he had CD when he scoped but didn't want to push through the area hence the scan. I guess what I am getting at is the test is very sensitive to visualising inflammation and thickening of the small bowel. Might be a worth a try if you can get it.

As to the weight. I recall reading time and time again on here of members not losing weight when flaring so I don't think you are alone there. It's a bit like if you have CD you have diarrhoea....it ain't necessarily so!

Good luck hun. I hope the docs get their act together soon so you can get some much needed relief, whatever the cause!

Much love, :Karl:
Dusty. xxxxxxxx
 
Last edited:
while a dx is certainly important in the mean time do what makes you feel best such as identifying triggers and avoiding them. i know how frustrating it can be as i was dx with food allergies for many years with continued sx and only recently was a crohns dx made. i was dx from what is called a CT with enterography. this is a specialized CT that allows a good look at the bowels so maybe this is something to pursue. i too have had vomiting and diarrhea for almost 10 years but never have been thin so it can happen. it's complicated but i always ate to help with the upset stomach and nausea despite my sx so maybe that is part of it.
 
I am with you guys. my CRP and white bloodcells don't go up unless it is too late. throwing up, diarrea (watery with mucus) being tired, not being able to stand on ur feet for more than an hour, not wanting to eat anything as well as mild fever for 4 nights in a row are indications for me that something is not right.
 
Top