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Terrible GI - Your opinions please

Hi all,

I am 28 years old and am a nursing student. I have suffered with tummy problems since the age of about 16. After being diagnosed with gastroenteritis about 100 times I questioned the GP who then said, 'Wow, this isn't right.'

Fast forward a few years. GP is adamant I have IBD (didn't specify which) One day in a severe 'flare' attend GP's and she admits me straight away, saying it wasn't right to keep waiting. The gastro consultant saw me pressed my tummy a few times. Advised me I had IBS and discharged me. GP was furious are expedited a further letter advising she wanted me seen. Gastro saw me again, another examination, IBS.

GP complained again finally did a flexi biopsy confirmed coeliac disease. At last I thought I was 'cured'. This diagnosis came in 2007 and I still have a nightmare.

I have since changed address so am now in a different health board but again this GP is adamant it's IBD.

basic symptoms :

> Numerous blood tests are taken and EVERY test shows raised CRP
> Low in iron so iron induced anaemia. Had 8 weeks of transfusions and iron continuously drops despite medication
> Low vitamin B & D

Flare symptoms :

>Excrutiating pain in lower tummy which makes me vomit
> Sweat literally dripping of my head but I shiver with cold
> diarhoea where I'm normally on the toilet for up to 5 hours
> Blood on the toilet paper (usually bright red which doesn't concern me but have had clots on three occasions)
> severe pain in rectum

My GP is so certain it is crohns they prescribe pred which works a treat. I have also been given colifoam in the past. My most recent flare up started on August 29th by 2nd September I was in tears because the pain was unbearable. To the point if someone had said to me then we can take this pain away but that will mean you die I would have happily accepted ~ that is the extent of this pain.

My consultant gastro however insists it is IBS. Now don't get me wrong I have IBS I think we al do to some extent mainly due to diet, time etc. however, I had a colonoscopy done which did come back negative however I had been on pred for a number of weeks/months and wasn't in flare. The Gastro cannot answer why I respond to steroids and when I went for my colonoscopy failed to include in the referral that I had PR bleeding.

On another occasion he said if a stool sample showed calprotectin he would confirm. He then said 'oh these results show raised calprotectin.' Well I'm gonna do another and not diagnose you. That was the last time I saw him.

I recently stopped my pred. From the flare I lost 13lb in 4 days but feel better now. By no means perfect and on daily slow release tramadol, loperamide, peppermint capsules and mebeverine but at least I can function.

I am currently working in endoscopy and after seeking advise each specialist said they would have confirmed crohns by now. The difficulty I face is my GP wants me to apply for out of area funding. If I put is letter in the consultant will be made aware I am asking for a second opinion and I wil be working with this consultant over the next few weeks, (a downside to being a health professional and also the reason I refuse to go to A&E when in flare as these are likely to be my colleagues at some point) Further to the raised CRP etc I have also developed sinus tachycardia (basically a very fast heart rate) My resting hear rate is about 136,it was picked up by chance on the wards then by my haematologist. I have just had to have a week ECG recording and had an echo. I am awaiting the results but my cardiologist was certain it was secondary sinus tachy meaning it was being caused by something else. He specifically stated a stomach problem etc could be causing this.

As I am sure you understand aside from all the issues I envy the possibility of being trialled on medication to place me in remission. I don't want to waste the health authorities time and money for something that is IBS. My GP is convinced it's IBD hence supporting my application I would just like to know your thoughts on my information above before deciding whether to seek a second opinion or whether to admit defeat.

Thank you in advance x:ghug::poo::sign0085:
 

DJW

Forum Monitor
Hi. You've been to he'll and back eh? Don't accept defeat. I would go for a second opinion. You're suffering and deserve to be treated, not sent away with an IBS diagnosis. Even after I was diagnosed my GI suggested I get a second opinion.
 
I had to fire my GI here and get a new one. Not sure if it is possible in the UK, but I certainly would explore options like that. Hope it settles out quickly for you in either case.
 

Jennifer

Adminstrator
Staff member
Location
SLO
I agree with the second opinion. IBS does not cause bleeding for one and two only microscopic inflammation has been found in some patients with IBS. You would not be dealing with a raised CRP from IBS. If I had a GI tell me it was IBS even with one of those issues going on I'd walk out and start looking for another one. Unfortunately it can take a long time to get a proper diagnosis because so many illnesses cause the same or similar symptoms. To just say IBS after hardly any tests is unacceptable especially considering the fact that you have two issues that aren't even related to IBS.

Keep us posted on what you decide to do. :)
 

rygon

Moderator
I would also go for the 2nd opinion, I wouldnt worry about the 1st doctors response as he isnt doing a good job as it is, he cant do much worse knowing about the 2nd opinion. Its your life that is being affected so dont settle for sub standard treatment
 
Sounds like they have looked at the large bowel but not the small bowel. Is a capsule endoscopy a possibility for you?
 
Geez, sounds like that doctor got his medical license from a Cracker jack box! If your GP is sure you have IBD, I would ask her to refer you to a different Gastroenterologist. I do know that doctors love to throw the IBS diagnosis at people though. I am in that category right now. I am not sure what I have, but I Do not think I have IBS, my symptoms do not fit IBS at all.... I hope you get some answers and help soon.
 
Ella read your post I feel for you, I think the time has long past where you consider colleagues thoughts opinions about you needing treatment for a chronic health condition give it to the consultant between the eyes and demand someone else ,it's your right,it's your health and wellbeing that's at risk.as for not going to emergency dept if your needing help with a flare?if you had a broken leg you,d go.if you had a patient you,d tell them to go.your gp sounds really good by the way value there opinion above the consultant who has probably painted himself into a corner with a wrong diagnosis and won,t man up.
Good luck hope your better soon


Good luck hope your better soon
 
You don't mention having any small bowel tests done...that is key for CD since many CDers have CD in their small intestines and a colonoscopy doesn't get far enough up to thoroughly see the small intestines. You've had some bad experiences with that GI for sure, to simply press on your tummy and call it IBS is BS on his part...get your small bowel checked and go from there.

Best of luck you get a proper DX and treatment...and your life back.
 
Location
UK
Hey ElleALaw, sorry to hear you're struggling so much. You're right, he does sound like a terrible GI.
Please, please do not 'admit defeat'. Definitely seek a second opinion. If you have a spare £150-200 I thoroughly recommend seeing a GI privately. You'll get 40 minutes to talk and much of the time they are willing to add you to their NHS list anyway.

My symptoms are not as severe as yours yet my (private) GI is very insistent on getting crohn's ruled out.

How raised was your Calprotectin? You mentioned that he was going to do another - has he? Remember that if you're on pred, it won't give a true view of the problem..
That's about £100 privately if you wanted to go down that route (although i'm sure i've seen it for half of that online, but not sure a GI would take it seriously enough.)

Best of luck
 
Hi all,

Thank you so much for all your replies, they have given me hope in darkness. Today someone got diagnosed with IBD I was envious - they were immediately put on treatment. I obviously wasn't envious of the condition but envious of the fact the diagnosis had been made and treatment started. All I want is a chance to become the best nurse I can be without my own health fighting against me.

I asked for the past two years of blood results from the surgery as every time they have raised CRP. They only gave me my last looks done in July where I was non symptomatic but here they are :

LOW serum albumin
HIGH CRP
LOW haematocrit
HIGH ESR

Ferritin was 37 (after my transfusions for anaemia this went up to nearly 300) it has been dropping since despite being on iron (305mg twice a day) It also states if active inflammation (which the above results would suggest) it can give a high ferritin reading. This combined with the haemocrit results would suggest anaemia again which cold account for the cardiac issues now being found.

Examinations in full are colonoscopy and flexi sig plus numerous look tests. He didn't advice me what the Calprotectin was. I sent another sample last November and haven't heard from him since. My parents have said they'll pay for me to go private but what if it is IBS, I'd feel like a fraud and wasting their money. Maybe that's partly why I won't go to A&R aswell. The thought of this for the rest of my life without a solution well I think I'd lose the will to live. I know that sounds dramatic but the pain, I just can't describe it. Of course my professional head tells me something has to be going on for me to have the blood results etc. I guess it's just personal fear combined with professional fear of doctors so in my mind I have always put on a pedestal.

Any opinions on blood results or anything above greatly appreciated and thank you all for such kind words of encouragement. Wishing you a less bumpy ride on this horrible journey we'd all love to stop.

Hugs, Elle x x x
 
Location
UK
Examinations in full are colonoscopy and flexi sig plus numerous look tests. He didn't advice me what the Calprotectin was. I sent another sample last November and haven't heard from him since. My parents have said they'll pay for me to go private but what if it is IBS, I'd feel like a fraud and wasting their money. Maybe that's partly why I won't go to A&R aswell. The thought of this for the rest of my life without a solution well I think I'd lose the will to live. I know that sounds dramatic but the pain, I just can't describe it. Of course my professional head tells me something has to be going on for me to have the blood results etc. I guess it's just personal fear combined with professional fear of doctors so in my mind I have always put on a pedestal.

Any opinions on blood results or anything above greatly appreciated and thank you all for such kind words of encouragement. Wishing you a less bumpy ride on this horrible journey we'd all love to stop.

Hugs, Elle x x x
I'm not medically educated, but your symptoms do not sound like IBS to me. And even on the off chance that it it is, the right GI WILL be able to offer some degree of help.

I absolutely know how you feel regarding doctors, but there comes a point where you just have to say f### it. This is your life, don't let fear of a person's (that's all they are) opinion control it.

As for your parents, i'm sure they will want nothing more than to see you happy and well again. Please take them up on their offer.

Do chase up your calprotectin results. Knowledge is power and all of that.. In the meantime... keep your head up :hug:
 
I'm not medically educated, but your symptoms do not sound like IBS to me. And even on the off chance that it it is, the right GI WILL be able to offer some degree of help.

I absolutely know how you feel regarding doctors, but there comes a point where you just have to say f### it. This is your life, don't let fear of a person's (that's all they are) opinion control it.

As for your parents, i'm sure they will want nothing more than to see you happy and well again. Please take them up on their offer.

Do chase up your calprotectin results. Knowledge is power and all of that.. In the meantime... keep your head up :hug:

Thanks Hun that is so kind of you. Think its time I take action. Will keep you posted xxxx :ghug:
 
I recently stopped my pred.
I'm keeping my fingers crossed that you can get a proper diagnosis soon, as well as the medications needed to help ease your symptoms.

I was curious to know if you stopped your prednisone cold turkey, or if you were following a proper tapering down of the dosage? There are many serious side effects by not following a taper, and in one of your posts here, you mentioned some recently discovered cardiac issues. I'm concerned for you.
 
I'm keeping my fingers crossed that you can get a proper diagnosis soon, as well as the medications needed to help ease your symptoms.

I was curious to know if you stopped your prednisone cold turkey, or if you were following a proper tapering down of the dosage? There are many serious side effects by not following a taper, and in one of your posts here, you mentioned some recently discovered cardiac issues. I'm concerned for you.
Hi Hun,

Thanks for your concern. I'm pleased to say I was put on a correctly tapered dose of pred. Started on 4 x 5mg tabs for x amount of days then reduce by one over a period of time :)

Fingers crossed xxxxx :ghug:
 
Have you ever considered fasting?
What does your diet look like?
What type of iron supplement are you taking? (ex. fumarate)
**Blackstrap molasses 20g has 25% RDA of iron and makes a great tea

A few recommendations from someone who has been from ferritin of 3, to 250, back to 3 and holistically restored it to reference ranges:

Dietary staples include high quality omega 3, fish (sardines and salmon are phenomenal, MCT oils require only saliva to digest. L-Glutamine is the preferred amino acid for gut repair as well. Quality fats are the greatest healers besides fasting.
 
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