Possible Crohn's disease. Need some help :(

Hi everyone, i'm after some advice please. My partner has suffered with abdominal discomfort and gastric symptoms for several years now. He gets diarrhoea, constipation, mucousy stools (sorry, tmi). He also gets alot of bloating and tenderness, in particular around the rising colon area. His stomach makes constant noises and gurgling, and he has occasional vomiting.

The thing is over the last month the vomiting, bloating and abdominal pain has been more frequent (2-3 days a week). He has always assumed that he has ibs and the vomiting is down to something he has eaten, but due to the frequency of it now and the fact that no one else in the house seems to have problems he has started to think it could be something else. He has found out that his cousin has crohns and was wondering if it could be that.

The problem is that right now he is really not well. He is in bed with vomiting and abdominal pain again, and i was wondering if there is any way of relieving the symptoms while he waits for a GP appointment?

Any advice or suggestions would be greatly appreciated as he is really suffering with this now

So sorry your partner is ill. It sounds consistent with crohns but it is difficult to say without proper tests. Is he going to the toilet? If not, it might be worth taking him to hospital. At least there they can do tests to find out what the issue is. Otherwise, just sips of water and paracetamol for the pain if he can keep them down.

He's just informed me that he hasn't had a bm for 2 days, so i'm starting to think a partial blockage? He says he's feeling a bit better now, and he has some senokot so hoping they help a little. He doesn't want to go to the hospital (is this a man thing? Lol) but i will be ringing the docs first thing tomorrow to get him in...but if he gets any worse then he will be going to the hospital whether he likes it or not!!

Sorry to hear the trouble your other half is going through, most of the symptoms you've mentioned I've personally experienced. The only thing that would guarantee/rule out anything would be to seek a specialists advice in the hospital as frequent trips to the GP can lead to a variety of diagnosis and the problems might continue.

GPs can only do so much, sometimes it's better to think of yourself and try to find out the problem instead of the constant suffering.

Yeah i was telling him earlier that the gp will say it's this, that or the other...and not to let them fob him off with the 'it's viral' crap! I think that if he gets bad again then i may just ring for an ambulance because he is pretty bad, felling like he'll pass out and in pain

I've been reading your responses to him, and he's more open to going to the hospital if it flares again, so that's a step in the right direction

kez035 said:

Yeah i was telling him earlier that the gp will say it's this, that or the other...and not to let them fob him off with the 'it's viral' crap! I think that if he gets bad again then i may just ring for an ambulance because he is pretty bad, felling like he'll pass out and in pain

I've been reading your responses to him, and he's more open to going to the hospital if it flares again, so that's a step in the right direction

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Good! I left my problems ongoing for a while and I was admitted as soon as I had my colonoscopy, it's better to deal with it as soon as you can.

Right now I'd probably keep him off solid food until the pains subside, probably give him light things like fruit juice, soups, yogurts.. etc things that don't overwork your bowel or you could even liquefy his meals just to give the digestive process a break. As for the pain, paracetamol every so often or maybe something stronger and hopefully that works in the mean time.

Great, thanks for all the advice. Soup it is then

Still going to call the gp in the morning in the hope that they'll refer to gastro due to family history, but if things flare we'll be making a trip to the hospital to see if he can get any answers there.

Hi kez. Sorry your partner is doing so poorly.
I would go to the hospital if I was in his shoes. A lot of pain and unable to go to the washroom means something is going on.
They can assess him, give fluids and manage his pain. If he's like me he doesn't want to worry people - he may be feeling a lot worse than he's letting on.

Sending you both my support. Hope you get answers soon.

He's alot more comfortable right now, and he has managed to go to the bathroom a bit. He is agreeing however in regards to going to hospital. He's had some soup for now and some small amounts to drink, andhas said that if the pain and vomiting returns then i am allowed to call for an ambulance (obviously he won't be able to drive himself and i can't drive and we have 2 young kids), but that in itself is something.

I've been trying to get him to see someone about his stomach for 10 years now...shame it had to get this bad before he agreed with me!

You must make sure that he sees his GP and doesn't wriggle out of it when he feels better. He should see a GI.

Trust me, he's not getting out of it this time! I'll drag him there by his ears if i have to

I did get him there once about 8 years ago and the gp said after about 30 seconds, it's colic...you'll be fine. It made him feel like an idiot so he's never gone back. But now he knows something is definitely wrong, and now he knows his cousin has crohn's he's more willing to go.

kez035 said:

I did get him there once about 8 years ago and the gp said after about 30 seconds, it's colic...you'll be fine. It made him feel like an idiot so he's never gone back. But now he knows something is definitely wrong, and now he knows his cousin has crohn's he's more willing to go.

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He is a typical man then! Make sure that when he sees a specialist, it is a top specialist. When I was first ill, my GP thought it was stress and I kept on being sent away. It was during my finals at University. I remember my parents paid for me to see a GI privately who diagnosed me from symptons then transferred me back to the NHS for treatment.

I'm going to request for him to see our sons...he has wheat intolerance and his gi was very interested in the family history. And she was very thorough in ensuring my little boy didn't have crohn's, but she did say that he is at risk of developing it

I will look into the private route though...but i know my sons gi does private consultations as well as NHS.

kez035 said:

I will look into the private route though...but i know my sons gi does private consultations as well as NHS.

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I was diagnosed in 1983 by a specialist at Bournemouth hospital. When I came to london, I originally went to my local hospital where I had the most horrific experience. I have been going to St Marks for over 20 years now, I like being at a hospital that specialises in bowels. You should be able to get a GI appointment quite quickly given your husband's symptoms. The only thing I can say is treatment is so much better than when I was diagnosed, it must be worrying to think that your sons could get Crohn's. Hopefully that won't happen!

My sons list of conditions is as long as my arm already. He was seen by a gi within a week of his dietician raising concerns about his symptoms which were thought to be coeliacs. So hopefully you're right and my partner will be seen pretty quickly. We're based in north Staffordshire and it can be hit and miss as i've found out through my son being under several consultants...but i'll be happy if we can get my partner under the same gi, as she is a surgeon as well as consultant. We have a good gp at the mo who i've gotten to know through my son seeing him, and he is one who listens, he is fab!

Looks like we're going to have to go with the hosputal option...called the GP and there are NO available appointments at all!! Unbelievable :/

That is awful. How LNG before an appointment? So are you taking him to A&E? If so, I would recommend taking him to the hospital where your son is treated.

They just said that there are no bookable appointment at all, just ridiculous! He's feeling good today so he said he'll go to our local hospital and see if they can put a referral in, but if he feels bad he'll go to the A&E at the hospital my son goes to.

Ok, so just a quick update. We managed to get him in to see a GP yesterday, and the GP found it funny that he has 'diagnosed himself'. The GP said he does not have Crohn's on the basis that he is not passing blood?? He is treating him as IBS and has prescribed mebevine 135 and will se him again in 3 weeks. He has however requested a blood test screening for Crohn's and Coeliac....i know with Coeliac that they will be looking for IgA and IgG levels, but what will they look for with Crohn's?

I'm not convinced that he has IBS, but is the GP correct in saying that a lack of blood in his stools completely rules out Crohn's?

Thank you to everyone for your advice up to now

GP is incorrect with lack of passing blood meaning he doesn't have Crohn's. I have never passed blood in my stools and I have Crohn's. My Crohn's is in my small intestines, which means any bleeding would be well incorporated into the stool and difficult to identify when passed. I also never really had any major issues with diarrhea, only occasional and certainly not multiple times a day.

But I definitely have Crohn's.

Thank you, i didn't think it was an 'in all cases' symptom. He's having the blood test on monday so hopefully we'll have some answers then. Is it just changes in blood cells showing inflammation that they look for, or is it a more in depth gene screening? I haven't the foggiest when it comes to blood screening for Crohn's.

I don't have blood all the time when in a flare. Inflammation doesn't always show up in blood tests. IBS as a diagnosis is used far too often.

A gp should be testing inflammatory markers and checking there is no anemia.

Attaching uk guidelines for IBS.

http://www.patient.co.uk/doctor/irritable-bowel-syndrome-pro

Brilliant, thank you very much for that. I know his cousin was diagnosed with IBS by several doctors, but when nothing they advised was working, they looked into it more and she was diagnosed with Crohn's. He's also been advised to look at FODMAP...when i explained it to him last night he was less than impressed, lol.

Guess we'll just have to wait for the blood test results now and hope that gives him a definite answer.

Going in the right direction now at least.

I have a dx of IBS and daughter has Crohn's.

Before her dx, we both did the FODMAP diet. While I got better on the diet she got sicker.

I hope you don't mind my 2 cents although I am undiagnosed...

I understand that with the FODMAP diet there are a couple of theories...

one is that it is a cumulative thing ie don't eat too many overall in one day, but a little of one or two might be OK

Also - some people think it is just a general guideline of foods to be aware of ie some people cut out fodmaps or reduce as much as possible, then add them in slowly to see which ones are the problem / increase tolerance - some people are fine with some of them. Note - maybe talk to a health professional before going on an elimination diet like this as it can be hard on the body.

I used to find that when my tummy was dodgy I had to stay away from them, but when I was OK they were mostly fine - so let your husband know that if fodmaps are the problem there is hope

He's going to give it a try like the GP advised, but none of his symptoms seem to be exacerbated by any of the foods on the bad FODMAP list, but i have told him to do what we did with our son and keep a food diary. That way he can see if there is any link or not.

Thing is his symptoms have got worse over the last few weeks, and seemed more like obstruction than anything. He said he felt the best he has in months yesterday, which was sods law, as when the GP palpated his abdomen he felt ok, but if he'd done it last week he would have been jumping in pain.

I still have the nod for him to go the hospital route if he's bad though.

I couldn't do the FODMAP, fibre makes me worse at the moment. On the low residue diet which helps, but very difficult. I have been on it three months now. I remember my mum having IBS, she used to get horrific constipation. But other things need to be ruled out first. I have both IBD and IBS, but luckily not of the constipating type.

kez035 said:

Ok, so just a quick update. We managed to get him in to see a GP yesterday, and the GP found it funny that he has 'diagnosed himself'. The GP said he does not have Crohn's on the basis that he is not passing blood?? He is treating him as IBS and has prescribed mebevine 135 and will se him again in 3 weeks. He has however requested a blood test screening for Crohn's and Coeliac....i know with Coeliac that they will be looking for IgA and IgG levels, but what will they look for with Crohn's?

I'm not convinced that he has IBS, but is the GP correct in saying that a lack of blood in his stools completely rules out Crohn's?

Thank you to everyone for your advice up to now

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I had a diagnosis of active Crohn's and did not pass any visible blood in the first year. I don't think I even had pain in the first year; just lost 40 lbs in a month.
Blood and pain came after the diagnosis.

GP's are good, but their knowledge is limited in certain areas. If it is IBS, then fine but neither of us are convinced. His symptoms just don't fit.

I must say though, the GP he saw was one that i took my son to once with severe vomiting when he was a few days old. I asked if he could be lactose intolerant and the GP said no, he's fine. 18 months later another GP referred him to an immunologist and he was diagnosed with severe milk allergy...so i guess my faith in this particular GP is non existent!

He hasn't lost weight, but he doesn't gain weight either. He's been the same weight for years, and he is only slim built.

I've never passed blood and never had extreme pain either. Crohn's can present in lots of different ways.

Wow, 4 years remission! All the best to you, and thank you for the insight...sounds like i'm wanting it to be Crohn's but i hope the blood test shows something. I know that this isn't IBS, he is just too ill with it if you know what I mean. Don't get me wrong, I know IBS is not nice and can make you very poorly, but I just have a gut feeling (no pun intended) that this is something else.

Kez, are they doing a fecal calprotectin test as well? That will often show up inflammatory markers indicative of Crohn's.

No, there has been no mention of any tests other than a blood draw. But he is going back in 3 weeks so i'll get him to mention it. I thought it was odd that they hadn't asked for a stool sample.

The GP offered a rectal exam but he refused... :facepalm:

Had a long few months, so I will be as brief as I can. At the moment it feels like we're taking 1 step forward and 10 back!

The blood test showed no inflammatory markers, so that GP had no interest in further tests at all! A few weeks later he got an appointment with a different GP who suspected gallstones, so he had to wait 2 months for an ultrasound...which showed nothing!

He then got ill again, and actually let me phone an ambulance, in full flare, massive swelling on his side, vomiting, pain, shivering. The paramedics were convinced he had a blockage that needed investigating....YAY, we're going to get somewhere I thought! NO the ambulance left him in A&E where he sat for 3 hours, subsequently felt better when he was called to be seen, and the doc didn't even examine him, and sent him home!

Again he got in with a different GP, who referred him to an upper GI surgeon, and for a CT. The GI is convinced he has crohn's, but wants tests to confirm, another blood test showed nothing, so she has booked another US...he went for the CT, only to be told the GI has cancelled it, even though it was the GP who requested it!

So yeah, that's where we're at now...he's currently on the sofa wrapped in 2 blankets, freezing, shivering and feeling sick, and we're nowhere near a diagnosis and treatment.

Feel like banging my head against.the wall!

Just keeps getting better! He phoned the GI secretary today to find out what is going on with this US that was supposedly being booked over a month ago, to be told that the GI hasn't booked it yet as they forgot!! :ybatty:

ARE YOU BEING SERIOUS RIGHT NOW!

He has booked a phone consult with the GP and is going to request a calprotectin test, and a trial on prednisone.

So sorry all this is going on so long. Unfortunately many doctors seem to assume everyone is healthy. And any negative test result is taken as proof of complete health, no matter how many other things have not been tested for.

I'm not sure many doctors would prescribe prednisone without a clear diagnosis, prednisone has so many risks and side effects, they have to be able to show it's worth the risks, which would require a diagnosis.

Keep chasing tests, but don't let the stress get to you. Don't waste time on dismissive doctors. If you can find one GP to see regularly, rather than seeing someone different each time, that could be a great help.

Thanks for your reply. The GP he has seen the last couple of times is great and he's sticking with him now. The GP has said that he can't do a calprotectin test as he is under a GI now so they have to do it, and as you said he can't prescribe anything without a diagnosis from the GI. He did however say that he would phone the GI himself and give them a,"rocket" as they are taking the Mick...GPs words, not mine

Unfortunately our local hospital has been suffering lately with record numbers of people turning up in A&E so alot of things are now being cancelled and delayed. The GP isn't happy with how they are treating my partner at the moment, but he is pushing them. So fingers crossed, we hear off the GI soon.

How long does it normally take to get a diagnosis? I know it will be different for everyone, but he can't go on like this much longer

I'm afraid there is no answer to that one, apart from how long is a piece of string.

Some only have to wait weeks/months for others it can be many many years.

It depends on how easy it is to find, the location and manifestation of the disease really and the willingness of medical staff to keep going when things come back normal.

I wish you & your husband best of luck and don't be afraid to make official complaints, keep phoning to chase appointments, return to A&E if needed and so on.

As for the GP I can see where the pred refusal comes from but GP's are perfectly able to order tests even when under a specialist, I suspect the GP wants it to come out of the Hospitals budget and not theirs. I could be wrong though.

If your appointment continues to be delayed then i'd ask for the test again, sell it as "so when we finally get to the GI this is already done and results in, since we have been so delayed it really would be beneficial for you to do it before we go"

Thanks for that, it's definitely something to try if we don't hear from the hospital soon.

It seems he's had this for years now, but it has all come to a head last may, and has stayed a constant problem with regular flares.

It's getting us both down now, and saying that makes me feel ever so selfish! But I'm trying so hard to help him.

I just hope the GI pulls their finger out soon, and gets something done. I know they have a list of patients a mile long, but it's heartbreaking watching him go through this, and feeling like the hospital just isn't interested.

If he hasn't heard off them by Wednesday (they were supposed to phone on Friday) then he'll have to call again, and ask them about the complaints procedure even if it's to just put the wind up them a bit.

Have you tried PALs yet? From unfortunate experience with an evil GI, if you get in touch with them they'll either attempt to resolve the issue or alternatively give you a second opinion (I.e. another team member) and thusly I really recommend them (even though for me it took 7 GI consultants and 7 years for them to even consider doing tests taking every pill under the planet etc, but then I'm only just out of my teen years and the NHS well they never believe a soul under 20 could have such issues or so it seems, you'd think they'd take my defiencies more seriously than the have etc lol)

Hope it sorts out for you soon and you find the answer (off topic question, but has he had any general blood tests e.g. for calcium, vit d, b12, iron etc) ^ ^

Hi, thank you. PALS is certainly going to be a good option if nothing happens this week. Sorry to hear it took so long for you, it must have been a living nightmare!

The only bloods that have been done were to rule out coeliac and to look for inflammatory markers. I think he definitely has some deficiency now as he is feeling tired and weak alot, so I'm thinking of getting him some multivitamins but dont know if that's the right thing to do as they won't see any problem if they do request a screen for deficiency. I am picking up a juicer tomorrow so as he can get something in him if he has a flare, that hopefully won't affect him, and will give him some nutrition at least.

He's lost just over a stone in the last few months, and he was only 9.5 stone to begin with so he can't really afford to lose much more.

Can I just ask, how are you doing since you were diagnosed? I hope it's settled down for you.

Remember there are a huge number of conditions that could be causing these symptoms - it sounds like you're already kind of assuming he has Crohn's, wanting to try prednisone, talking about "flares", etc.

Crohn's and UC are very very common compared to a vast number of other conditions, so they will come you again and again in Internet searches and may be among the first things doctors consider, but at this point your partner could easily have something else entirely - which means that it's even harder to predict things like the time it takes to diagnose. Don't read so much about certain conditions that you end up convincing yourself they must be the answer.

Basic blood tests include checking for deficiencies - I would ask the doctor about what was tested for, because it's unlikely they'd test for inflammation markers without checking nutrient levels, probably kidney and liver function and a number of other things even if the doctor didn't mention them to you. Again, don't assume he has deficiencies based on symptoms. You'll only know by test results. It's not at all uncommon to have horrendous fatigue and yet have normal blood results.

I realise that, and I appreciate your comments. The reason we're thinking it is crohn's is because he has family history of it. They did test kidney and liver function at the hospital as well as retesting for inflammatory markers and coeliac
The main reason I'm thinking he has deficiency is because of how much his diet is suffering with these flares/attacks.

I worked in a hospital as a clinical support worker up until last year, and have done for 10 years as well as starting my nursing degree, so I'm not a complete stranger to medical conditions.

The symptoms he suffers during these episodes are consistent with a partial obstruction which i have first hand experience with through work, and the paramedics that attended when he allowed me to call an ambulance immediately stated that he appeared to have a blockage due to the symptoms and physical exam (he has a clear swelling around the size of a grapefruit that is very tender, along with lack of bowel movement for several days) up to now this has never been accompanied with overflow, but vomiting and severe pain is common.

We weren't too sure what was going on initially, but thought crohn's was a possibility, and when he saw the GI in November she felt that Crohn's was highly likely given the symptoms and family history. But at the moment we are not discounting other possibilities.

The main thing is that we are getting frustrated with how slow things are, and my partner is getting very scared that it is something more serious as there was a small mass found in his gallbladder during the US, and yet nothing is being done to investigate this.

I really do appreciate everyone's comments, and I am basically trying to get as much first hand experience and information as possible, while trying to keep his mind off the more serious possibilities. He is terrified that he will be told that he has cancer, and is really struggling to think of anything else.

Since last May, all he talks about is his symptoms so I am basically doing this to stop him from googling, and to show him that people in a similar boat to him are offering him support and advice.

Sorry for the long post, lol
And thank you everyone for the comments and suggestions.

StarGirrrrl said:

As for the GP I can see where the pred refusal comes from but GP's are perfectly able to order tests even when under a specialist, I suspect the GP wants it to come out of the Hospitals budget and not theirs.

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My guess would be that it's unprofessional for a GP to organise tests once a patient is under the care of a consultant. GPs can order some hospital tests, but it is rare that they would do so when a consultant is already involved. Maybe they think they'd be stepping on the consultant's toes or just overcomplicating things, but it is standard practice for the consultant to arrange tests (and often treatment as well), not GPs. And it would be very unusual for a consultant to prescribe prednisone with no diagnosis or test result indicating an illess that would actually respond to prednisone, I tthink it very unlikely that a GP could ever do it. They'd be putting the patient at risk, possibly when there is no chance the prednisone could even help. Prednisone is not something to mess around with.

What tests has your partner had so far? I would think the consultant should order an upper endoscopy and colonoscopy soon if those have not been done yet.

I'm not sure how A&E crisis affects waiting times. I know it's so much in the news at the moment, but last time I went to A&E, it was full and the waiting time was listed as four hours, but I was seen and admitted in under fifteen minutes, given a bed and examined by a surgeon, then sent immediately for scans. A&E will prioritise, and so will out-patient appointments and tests.

Emphasise your partner's weight loss. From your descriptions, that seems to be the symptom that would be hardest for doctors to dismiss, as it can't be a symptom of IBS. He will only get seen and tested promptly at A&E if he is in an immediate emergency: A&E is not the place to go seeking a diagnosis for chronic (on-going) symptoms. Go to A&E if your partner passes out from pain or is getting dehydrated, or if the pain is suddenly worse than normal. But at A&E they will be concerned with the possibly of immediate threats to his health - they can give painkillers, fluids, and check for signs of an emergency situation (by checking blood pressure, temperature, blood tests, abdominal examination, etc. at first, then maybe scans or other tests if there's an indication for them).

If they don't seem interested in finding out what's wrong at A&E, it's because it's not their job and they don't have the expertise. If there's no immediate threat to health, diagnosis and treatment has to come from the consultant. Stress to the consultant that your partner is losing weight and needs tests to be done promptly.

It's hard to understand how the system works sometimes. But things like forgetting to order tests is not part of the system - that's just doing things wrong!
Get the GP to advocate for you to the consultant, and the consultant to order whatever tests he/she thinks necessary, and go to A&E any time things get suddenly worse.

Sorry - I didn't see your last reply before I posted.

A colonoscopy is the best way to rule out colon cancer. Depending on his age and family history, it may be that that should have been done very promptly. If he has any family history or any symptoms that could indicate other types of cancer, stress to the consultant (or ask the GP to) that he needs these investigated as soon as possible.

The GP is helping, and trying to push for him, but it doesn't seem to be working yet. He's only had the bloodtests for inflammatory markers and coeliac, and then the hospital tested for kidney and liver function too and the ultrasound.

I'm just hoping that the hospital get in touch soon as he is finding it really hard to cope. The GP prescribed him tramadol for pain, but that isn't practical when he has work as they knock him out, and paracetamol has no effect.

They will act faster if it's potentially cancer. I was referred under this and I saw a GI in a week, and had both endoscopies after 3 weeks.

But after that it took the dear old NHS months to do anything, which got very frustrating, and eventually had a diagnoses some 9 months after I started and a recommendation for surgery "soon" (turned out to be 6 weeks).

Things that did make me cope better were avoiding eating fibre, and Ensure and Complan shakes. I'd become seriously skinny, but got back about 1/2 a stone in the 6 weeks before surgery by having two of those a day.

DEmberton is right - it usually takes the NHS weeks/months to do each appointment or test - the time it's taking isn't necessarily an indication that what's wrong isn't serious or that it won't be possible to find the right diagnosis or effective treatment.

And it's also true that if there's a chance it's something serious where time matters, you can be very surprised by how fast the NHS can move when doctors feel there is a need for it - the goes for cancer and for acute emergencies. Did they tell you anything about the mass found on the US?

Also, regarding A&E and waiting times:

kez035 said:

The symptoms he suffers during these episodes are consistent with a partial obstruction which i have first hand experience with through work, and the paramedics that attended when he allowed me to call an ambulance immediately stated that he appeared to have a blockage due to the symptoms and physical exam (he has a clear swelling around the size of a grapefruit that is very tender, along with lack of bowel movement for several days) up to now this has never been accompanied with overflow, but vomiting and severe pain is common.

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Whatever your hear on the news about staying away from A&E at the moment, if he has an obstruction, ignore the media and go. I mentioned above that I was seen straightaway at an A&E department a few months ago when there was a four hour waiting time and it was packed, and that was because I had a blocked bowel at the time, which then perforated. I think you said earlier that they didn't see him on this occasion with the paramedics because his symptoms resolved, but if he is getting regular obstructions, if he's willing, go back to A&E. They won't ignore an obstructed bowel. The doctor I saw in A&E said the same thing as the paramedics said about your husband's abdomen - he could tell from the swelling that it was blocked, and I had no stoma output. I think most doctors and nurses, especially those in A&E, know very well when people are in real pain, they know when pain is not being exaggerated in any way.

If he is having obstructions regularly, this might be a way to get answers sooner than if you have to wait for outpatient appointments, but it most likely would involve being admitted, which he'd have to be prepared for, and they would probably discharge him if the severe symptoms resolve, even if no diagnosis had been reached. But they might manage to find the cause while investigating the obstruction.

They have just phoned him, and it turns out the the radiographer that performed the first ultrasound is the person responsible for cancelling the CT that was booked by the GI. The radiographer said that they wanted a better view of the gallbladder so they want to do another ultrasound. Just have to wait for the appointment now, but apparently the radiographer is rushing it through.

Good Luck with the tests and hope the answer comes soon (interesting they wanted another ultrasound only time I've had a repeat was when I had an abnormality :/)

(I'm undiagnosed per se, though my current local gi thinks I have some form of ibd- what exactly I have no clue, unfortunately as I don't have the usual d symptoms and they're not sure what happened re appendectomy and how much bowel they removed it's complicated @_@ least I know finally from the sitz marker test that something is wrong due to clumped markers, so hopefully they'll figure out what it is in the next month or two)

I hope they give you an answer soon, it's a long, frustrating journey isn't it!

The GI said that she thinks it's crohn's related, but there was a small mass found in the cystic duct of his gallbladder bladder at the last scan, so I don't understand why they are now saying that they didn't get a good view of his gallbladder and that's why they want to redo the ultrasound. He's going for it on Friday, but then we'll have all the faffing about trying to chase the results again....just hope it's a bit quicker this time round and that they are actually able to tell him something. We'll see i suppose.

So he has been for the ultrasound today, and the radiologist said that they can rule out the gallbladder being an issue, she said that there is a small polyp, but it wouldn't cause any of the problems that he is suffering. The radiologist said that she would let the GI know that the gallbladder is fine, and that the GI will then book any other tests required.

Now he is worried as the GI'S secretary has just phoned (4pm) and asked if he can go in tomorrow for a CT! He's wondering why they are wanting it done so quick, even though he obviously wants it done sooner rather than later...it's worried him that it seems TOO quick iykwim.

Probably just got lucky with a cancellation. I had to wait a month for a CT Scan.

That's what I said. I told him to think of it as a good thing, at least he doesn't have to wait weeks! Fingers crossed now that it shows something.

Good luck to both of you today

CT scan done, he had intravenous contrast as the GI had requested a scan of the vascular system too.. I assume this is to kill 2 birds with 1 stone and look at other possibilities while investigating the crohn's possibility? He was rather impressed at the speed of the scan, and how the nursing team were with him (really put him at ease). Now the waiting game again for the results. He was going to phone the GI'S secretary today to find out when to expect the results, but he's having a bad day, pain and vomiting again. He came in from work and went straight to bed .

Keeping my fingers and toes firmly crossed that the CT shows something, as I know that it might not, but he really needs some forms of treatment Now. I feel for everyone on here, and the length of time and all the tests etc that you have all had to go through to get your diagnosis and treatment! It's a hellish journey, and you all deserve medal
Thank you to everyone that has taken the time to read this thread, and answer my questions, you are all amazing, and the support my partner is getting through this has really helped!

Thank you all so much, whatever this turns out to be, your advice and comments has been incredible, and we honestly truly appreciate every word of it.

Still waiting for his CT results

Were you given a time frame to get the results back? You could phone GI's secretary and ask if they are in, request via letter, sent to GP etc.

It never fails to amaze me, Consultants order tests and say "see you in 6 months" and all the while test results are sitting on the Hospital system.

I always encourage people to request them especially if there is a long wait between appointments, and it's just silly not to have them when the Hospital has!

There's been no mention of an appointment, but on Friday the secretary said that they had the results but the GI needed to "review them and decide a course of action"....I know he's fed up of waiting but I feel sick with anxiety myself, lol. Just really hoping that they've seen something, anything that can give him an answer and that something is going to finally be done. Still got my fingers and toes firmly crossed!

The GI's secretary has just phoned him, she said the GI has reviewed the results and is referring him to a gastroenterologist. Now he has to wait for a letter from gastroenterology with an appointment. Obviously she couldn't say what, if anything has been seen in the CT.

Is a GI not a gastroenterologist?:confused2:

I only found out the results of my CT Scan at the regular follow up appointment 2 months later. Even better I found out they'd reviewed my case in a meeting, decided it was Crohns and decided to recommend surgery, but nobody thought to contact me in any way. Good old NHS.:thumbdown:

So don't make any assumptions about having to wait.

The GI that he is under at the moment is an Upper gastrointestinal surgeon. I'm hoping that the referral means that they have seen something, but obviously they aren't allowed to discuss such information over the phone. I'm hoping it will be fairly quick, as when my son was referred to gastroegastroenterology he didn't have to wait long at all, but that was paediatric outpatients and a completely different department.
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I can't believe they left it 2 months before telling you the results, especially when you needed surgery....I know the NHS is under strain but it's no real wonder why people are losing faith in them when things like that happen.

If it's any consolation, I've found that when the NHS actually does seem to be getting you seen and tested promptly, when they're ringing you rather than you having to chase them, it means something really is not good. Not that means your partner's tests are normal, kez035, just that they've probably not shown anything too desperately serious, or at least serious by their standards; quality of life doesn't seem to mean all that much to them sometimes.

And I'd always thought GI was the US equivalent of a UK gastroenterologist? I've never come across a GI here, always gastroenterologists (and various surgeons, e.g. colorectal surgeons, but again, never a GI surgeon).

I thought GI was gastroenterologist myself but when his first appointment came through it was with an upper gastrointestinal surgeon, so then I thought that they were different.

I am a bit concerned that they phoned him, as obviously there must be something showing in the CT, and things have sped up in the last month in regards to tests. I just hope it isn't anything too serious, which I'm guessing as they have said he needs to wait for the gastroenterologist appointment, it isn't time sensitive in their opinion. As you say, the effect on daily life to us is time sensitive, but it's been going on for so long now that a bit longer isn't going to really change anything, if you know what I mean.

At the Oxford Churchill Hospital there was an upper GI ward and a lower GI ward. I wasn't sure if that meant they were on different floors, or if it referred to which part of the body they specialised in ;-). It was the latter.

It does seem the two are distinctly different, and I had a specialist colorectal surgeon.

This is the University Hospital of North Staffordshire, or as it is now call, The Royal Stoke:/ , and they have the same, upper and lower.

You can't imagine how confused I got during my last hospital admission. I had emergency surgery, so was then on a surgery ward, under a surgical team. But the gastroenterologists I'd seen previously decided they wanted control of me too, and kept trying to switch me to the gastroenterology ward (which was actually "gastroenterology and infectious diseases" ward), plus I was seen by the nutrition team and had dieticians involved to manage my TPN... :sign0085:

I am a bit concerned that they phoned him, as obviously there must be something showing in the CT, and things have sped up in the last month in regards to tests. I just hope it isn't anything too serious, which I'm guessing as they have said he needs to wait for the gastroenterologist appointment, it isn't time sensitive in their opinion. As you say, the effect on daily life to us is time sensitive, but it's been going on for so long now that a bit longer isn't going to really change anything, if you know what I mean.

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I know what you mean. I would guess that if it were something like cancer (which is always the big worry, especially regarding time frame), they wouldn't let you wait for another referral. I have had doctors turn up unannounced on my doorstep before now; when it's really serious, you'll know. Hopefully the increase in speed of tests indicates they've found the problem and have realised you might actually want something done about it!

It may be worth asking your partner's GP about the CT scan results; they'll send them to the GP at some point, you may even be able to get the receptionist to tell you over the phone.

Thanks unxmas, it's worth a shot, especially if the appointment is a few weeks off. I know what you mean about the different departments, I had a similar thing when I was pregnant and they were querying ectopic (it wasn't luckily). But I was placed in a gaenocology ward as there were no beds on fmau, I ended up with the fmau and gaenacologist arguing in the middle of the ward over how to proceed with my care, so confusing ....thinking back now it was rather funny seeing 2 doctors warring over me, after I'd spent an entire night waiting to see just 1 of them!

This whole thread is a fantastic argument against nationalized health care! :ybatty: So sorry that he is being bounced around without any answers

Best part is that normally I'm a huge advocate of the NHS, and the treatment my son has received for his numerous conditions has been fab, the communication top notch...but all this with my partner is a world away from that, and as you said he is being bounced around with no explanation. Hopefully we will soon get answers, and remain being treated in one department, which should improve the current lack of communication between the numerous departments, consultants, GP'S, technicians etc... Hopefully

HANDAXE said:

This whole thread is a fantastic argument against nationalized health care! :ybatty: So sorry that he is being bounced around without any answers

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In all honesty, I am still incredibly grateful for the NHS, with all its failings. I will never stop appreciating that the healthcare I get here is free, that when I have to decide whether to see a doctor, have a test or surgery, start a treatment, I don't have to factor in the financial cost, don't even have to think about it.

Sorry for the off-topic comment. I hope you get answers soon, kez.

No worries unxmas, you're right though, we're very lucky to have the NHS and the knowledge that regardless of circumstances we all get the same treatment and don't have to worry about bills etc. Regardless of any problems God knows where we'd be without the good old NHS

It does feel like cattle class at times, but some of the stories from the US on here about people's battles with insurance makes you grateful we have it. Nobody who's too ill to work gets denied treatment, even if it isn't always as good as it might be.

He's been phoning the GP all week to try and get the CT results, as it turns out the results were sent for the GP to review and then put in the referral. The GP has just this minute had a look after 4 days of pestering and all they will say over the phone is that the CT showed strictures in the small bowel. Now he has to wait until Wednesdayfor a phone consultation with the GP to find out how badit is, what happens next and for the referral to be put through. :ybatty:

Glad you have some kind of answer. Mine was the same, and what they said to me was they could try to treat it with drugs, or go for surgery, and he didn't think the drugs would work with my stricture already being too far gone. So I guess it depends on how bad it is. But at least there's light at the end of the tunnel and you're not being fobbed off with IBS.

This could be a big step in the right direction. DEmberton is right that this should mean no more about IBS and things could start being taken seriously.

I know, I've never been more thankful that something "wrong" has been found! Just need to see where we go from here now, seems like going in circles again this week, but I suppose we'll just have to wait and see what the GP says next week and hopefully get things moving treatment wise. So I'm guessing alot of his symptoms this past year has been partial blockage as I'd originally suspected due to strictures?

Also, am I right in thinking that strictures in the small bowel points toward Crohn's more than ulcerative colitis and other IBD? Or am I miles off the mark?

UC would only be in the large bowel. And all the symptoms you mentioned in your first post I had when I had a stricture. So sounds like Crohns to me, though I'm not sure if anything else can cause a stricture.

The hospital have just phoned him again, he has an appointment with a gastroenterologist on Monday! So hopefully he'll have some treatment soon

And the GP has just phoned! He said that the CT showed several strictures on both the left and right hand side, and that the technician and GI surgeon have both put 'Crohns' on the results. Just need to wait for the gastro appointment to see what is going to be done now

Just got back, and hopefully he'll have some relief soon. He's been started on prednisolone 40mg a day, reducing each week for 8 weeks. He's had a blood test to see if he will be able to start azathioprine after the pred just in case he flares again. He has to go back in 6 weeks to see how he's doing. They are booking an MRI to see if the colon is affected at all, and if it is they will do a colonoscopy to take biopsies. They're also getting him in to a dietician. The gastro was pretty certain that he has crohn's, and that there is an hereditary pre disposition for it.