Please help - is this IBD / Crohns?

Is this Crohns Disease?

Hi folks,

I've registered today to get some advice as things are getting pretty desperate, not for me, but for my Fiancé, who I love very much. :hug:

I think it would help if I give a run down of what has occurred over the past year and hopefully that can put you all in the picture. Sorry if there is too much of a read below.

So it's August 2010, this thing started around July 2009, when Lewis was 28. He had recently stopped smoking, he was a heavy smoker of about 20 a day and to be fair his diet wasn't great either, although these things began to improve when we moved in together Jan 2009. He was experiencing pain in his shoulder which we think was due to a new desk job. Anyway the result of this was that he was taking a lot of Ibroprofen as a pain killer. We believe it was this that lead to his initial problems, the stomach pains started late July 2009, he was doubled over on the sofa, extreme nausea and a lot of bowl movements, not watery, but not fully formed either. The pain would last a couple of days and then improve for about a week, he described it to his Doctor as a gnawing, burning feeling in his stomach. He was immediately put on Omeprazole to reduce the level of acid in his stomach. This pattern repeated itself for about a month, until his Doctor gave him a blood test and diagnosed him as positive for H Pylori infection. He was treated with "triple therapy" anti-biotics in November. During the week treatment and 2 weeks after that he felt a great improvement but immediately after this the intermittent symptoms started up again. We were told it could be the use of the pain killers that altered the stomach environment causing the H Pylori infection.

He was told in January he would had to take Omeprazole for a month and then nothing for a month, following this if the symptoms were still there he was to take Omeprazole for another month before he would be referred to the hospital for a Urea Breath test to see if the infection was gone. By the time he got his appointment it was May and his symptoms were showing up with much more regularity, between February and his appointment in May he was continuing with the Omeprazole and taking 6 Domperidone nausea tablets a day to stop him from being physically sick, especially in the mornings. He was at this point not able to work a full week, managing 3 - 4 days at best before his symptoms appeared again. He could not eat anything greasy or spicy. We tried all sorts of supplements, mastic gum, DHL Liquorice, Manuka Honey, Pre and pro-biotics, e.t.c e.t.c but nothing really helped.

When we got the results in May they were negative, the H-Pylori was completely gone. We were in all honesty devastated because despite the fact the infection was gone, we knew there was now no hope of a quick diagnosis. Lewis started to wonder if he was causing the whole thing with his mind, which of course we know now isn't possible. Lewis' at this point, well his symptoms were so bad the Doctor referred him to the hospital for an Endoscopy and Ultrasound examination. At this point we were convinced he must have an ulcer caused by the H-Pylori infection. The results came back showing no ulcers, only severe gastritis, Lewis stomach lining was badly inflamed. The Ultrasound came back completely normal, again we were devastated. (it is so weird that we were put n a position where we were hoping there was something wrong with him!)

Around this time Lewis sent blood off for a York food allergy test, it came back with mild reactions to cows milk, wheat and egg. We took him off of these foods and this did seem to help temporarily. We still continue with this diet as it helps with his bloating. He had already been tested by his Doctor for Celiac disease, but he was told he didn't have it.

Following these results the Gastroenterologist suggested tablets for the maintenance of IBS, claiming Lewis' problem was "functional" and therefore the cause was not what was being treated. (i.e they didn't have a diagnosis!!) By this point Lewis was being sick in the shower every morning, the only saving grace was that the frequency of his bathroom trips did reduce a little with this IBS tablet treatment. Although the "stitch" feeling in areas of his stomach and back continued as did the constant nausea, accompanied by lethargy. It didn't really look like IBS to me. He was also now experiencing pain in the bowl which had not been a major symptom before. A friend of ours had been recently diagnosed as lactose intolerant, and so I demanded a lactose intolerance test for Lewis and was told they would have to do other stool tests first. (dealing with the NHS in this country can be a nightmare)

It was at this point Lewis got his Stool Calprotectin test, his score was 177, we were told normal was 0 - 50, this signified an significantly inflamed bowl. 3 weeks later he was asked to do another test, it was at this point down to 88, although Lewis was still having blood accompanying his stools, (not lots but some) (at this point, Lewis was on 10 tablets a day, 6 nausea tablets, 1 acid reducing tablet and 3 IBS tablets)

That takes us up to just over a month ago, Lewis' doctor prescribed a foam enema twice a day, took Lewis off the IBS tablets and nausea tablets and changed the type of acid reduction tablet. Lewis reacted badly, he was being physically sick in the morning and in the evenings and so only lasted 2 days off the nausea tablets. Within a week he was back on all his old medications. Although the foam enemas (pred) did help reduce the pain in his bowel, but he was only to do this treatment for 2 weeks.

He has been off work now for 4 weeks, the longest / most severe bout he has had of this. In addition with one of his recent bowel movements was about half a cup of blood. He still gets some blood in with his stool on a daily basis. He is now experiencing major itching and burning around the rectal area and up inside it, he has also formed a skin tag. The Doctor has mentioned IBD and is in the process of trying to arrange a Colonoscopy for Lewis at some point within the next 3 weeks. He has given him a new lower dose of foam enema. (the leaflet warns about mania and depression, that should be fun!!) Lewis still has severe nausea every day, although he is managing to eat, despite his appetite being low, he hasn't lost too much weight yet luckily. He can't eat anything without feeling awful afterwards and finds it uncomfortable going to the toilet, although this is only once or twice a day. He is always bloated and gassy and often gets pain in his bowl / stomach when bending. His diet has had to be stripped back as so much that he eats makes him feel really worse. He is just about to run out of sick pay with his employer and we are starting to worry if we'll ever get a diagnosis. I know a year may not seem like a long time to some people, but for us, especially Lewis the last 12 months have seemed more like 4 years.

At this point we are in a strange position, of course we do not want a diagnosis of Crohns, but at the same time we really do, at least he could start getting the right treatment which could result in remission and perhaps we'll get our normal lives back.

I've done A LOT of internet research over the last year and that is always a good and a bad thing, it can open up doors of possible diagnosis but also take you down false avenues, like when we were convinced Lewis had a massive ulcer in his stomach. :yfaint:

So I guess I would just like to ask all of you, with your huge amount of collective experience, does this sound like IBD / Crohns to you? :confused2:

Thanks for reading, I appreciate it guys, and advise is greatly appreciated.:ghug:

Wow, all this over a year, he needs to have a colonoscopy. This procedure can be done relatively quickly in Scotland and I think an emergency colonoscopy guideline is that it should be done within 3 weeks if it is judged to be an emergency.
However another more simple procedure would be a sigmoidscopy and i'm surprised this has'nt been performed as it would give an idea as to whats happening within the rectum and lower bowel.
From his symptoms, it is very possible that he has IBD and the mention of the sore shoulder is again something that could have been related to his IBD?? You may not know but IBD can cause inflammatory problems in other parts of ther body, mostly the large joints and taking Ibuprofen may well have had an adverse impact on his intestines and exasipated this. You don't get blood with IBS.
He's obviously got something going on and the sooner he gets properly assessed the sooner you'll know whats the cause is!

Smoking can cause Crohns in 60% of people who do smoke. Crohns is kind of like cancer, everyone has it and it is just waiting to come out.

Also don't ever take ibprofen in large amounts. it eats away at the lining in your stomach.

I think you should do whatever it takes to just do what the doctor says, Crohns isnt something that you want to be the answer. Also if he has a past of problems, then later on you will need to look into it. but see what happens, if he gets better good. if he starts losing 2 or more pounds a day. thats bad and he needs to see a doctor for an colonoscopy and get prepped for surgery. but Hopefully that won't happen.

Hi Boosh and :welcome:

I'm glad you found your way here. I understand what you mean about wanting a diagnosis and that is only natural when you have been living with is. I was the same way with Roo and she had a difficult 12 months prior to diagnosis as well, you just reach the point where you need to know so you can deal with it and see your loved one receive appropriate treatment and stop suffering. I have to say from your description that it sounds like IBD to me but lets face there is definitely something wrong that needs to be diagnosed and treated!

Stick around 'cause there's heaps of info and support here and please keep us posted on how both you and Lewis are going.

Welcome aboard!

Take care,
Dusty

hi there :welcome: Your bf story is alot like mine except no bleeding which was even harder to diagnose. I had weekly test done at at 32 for a year, and I was in so much pain they finally did aresection. My sister who has Crohns colitis was a heavy bleeder and no pain. MY older brother has UC and bled ti undercontrol with some pain. So three different stories from the same family. Some ON HERE AND NEVER GOT A DIAGNOSIS!

Glad your joined us ask us any questions you may. EVEN here gets the It is all in your.
take care I Honour you as an angel for common on here!

Hi Boosh and Lewis
and welcome fellow Brits

first off, this is not IBS! You do not bleed with IBS!

here's a table to compare IBD and IBS and UC

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

Secondly, and quite bizarrely, Lewis could have Ulcerative Colitis, and packing in smoking can actually kick this off, as opposed to smoking making Crohns worse!
research this about UC and smoking.
Pred enemas can help, but if he is inflamed in his bowel or colon, Prednisolone tablets would be a better choice, it heals inflammation quickly.

In the meantime whilst you're waiting for the scope, put Lewis on a low residue diet, this is white food only, no red meat, nothing coloured, no fruit except banana, no veg, no alcohol, no coffee or tea, just water, just chicken, white rice, white bread, white fish and mashed potato, and Arrowroot biscuits, this will give his bowels a rest and reduce the diarrhea. You can find this diet in the diet and treatment section on here.
good luck, I wish you well, any questions, just shoot
lotsa luv
Joan xxx

Truints- where did you get that statistic on smoking and Crohn's? If 60% of smoker's will get Crohn's, 1 in 4 people smoke so that would make 1 in 7 people have Crohn's!

Hi BB, welcome!! Lewis' symptoms are commonly seen on here so I'd certainly think they are indicative of IBD. There are also several who have struggled to get a dx which to me is as cruel as the disease itself. I hope you and Lewis can get some firm answers soon so you can start to fight back!! Good luck!

Hey there and welcome to the forums. Im so sorry to hear what a rough time it has been and i cant imagine the stress on you too and its great your trying to help so much. Ill never give a prediction on a diagnosis but for you and your fiances sake i sure hope you find some answers sooner than later. Im shocked he hasnt had the colonscopy uet but i would say thats a must. I really do hope that answers some questions for you. Gl and we'll see you around

Update.

Hi everyone,

Just wanted to thank you for all your lovely comments and support and update you on what has been happening with Lewis.

Lewis went to see his GP on Monday, after confirming he was still passing blood and had a constant stitch pain in the right side of his abdomen (which he had only had for 2 days at that point) the Doctor asked if he had heard from the hospital yet with regards to a colonoscopy appointment. We said no and the doctor told him one way of speeding up the process was a hospital referral. So that morning we headed down to accident and emergency, they conducted a few of the usual tests, chest x-ray, blood haemoglobin tests, prostate test, testing heart rate etc and said these were all fine. They still admitted him to the hospital and he stayed there overnight. The next day he was discharged in the evening and told to come back on the Wednesday morning for a sigmoidoscopy exam, which I believe is the large bowel.

He was told immediately afterwards that nothing "glaringly obvious" was found and has to wait 7 to 10 days for his biopsy results, he has also been asked to submit another stool sample for a Calprotectin test to examine the level of inflammation in his bowel. The specialist has said that he will only receive a full colonoscopy exam if the bleeding continues. It seems to be on and off and the moment. Lewis is only going to the toilet on average about once a day at the moment and sometimes not at all.oo:

He is still feeling awful and is off work, I think this is due to what he has been through this week and because of the food in the hospital and the solution he had to drink to clear his bowels prior to the examination. I should mention that on and off he has had blood in his ejaculate and it was quite bad last night - all blood. :eek2: I only mention such a personal detail to see if any of you recognise a connection with this symptom as to what might be going on. He has told his GP about this in the past (about 4 weeks ago) and was issued with some anti-biotics, however he reacted badly to these and so came off them. The blood stopped for about a week but has now come back.

Anyway, that's the update, just have to wait on the test results from the biopsy and stool sample coming back. Am I right in thinking that if his problem is located in the small bowel the sigmoidoscopy exam would not locate it?

All very confusing, any advice, as always, is greatly appreciated. :hug:

well, until i read your last post, i was going to say that everything you've described does indeed sound like IBD to me.. the confusing bit for me was the blood in his sperm... this i have never heard of with relation to IBD..... but i'm guessing that maybe a fistula has grown from his bowel to that area?? fistulas can be a complication of Crohn's.

i am not surprised he is feeling so debilitated after everything he's been through - i really hope you both get some answers soon, and appropriate treatment.

in your first post, i noticed you mentioned that he'd been on brufen and the triple-med treatment for h.pylori - although i know the h.pylori treatment was essential at that time, it is possible that all those meds made his stomach lining flare up more than before.. certainly ibruprofen is known to be a no-no for Crohn's/UC sufferers, and some antibiotics can worsen symptoms too.

there is good advice in this thread already, particularly about the low residue diet... and try to get him to drink plenty plain water - if he has stomach gripes, try it boiled and only slightly cooled.

good luck - keep us posted!

Hi There and welcome.

Sounds like you are going through a really rough time. The NHS really friggin frustrates me, always having to wait its just not fair. Those symptons of pain in right hand side of stomach and bleeding in stools is exactly what I had before I was diagnosed with Crohns back in 1999. I really hope that they come back with something from biopsy, surely they should be doing a colonscopy???? I would really really push to have this done, although its not the most enjoyable procedure its great for diagnosis in a lot of cases obviously not all.

I really hope you some answers as I know how frustrating this can be. Keep fighting. Sounds like your doing a great job with your partner, he is lucky he has you by his side.

Jo xx

Hi Boosh Baby, I think an "all blood" ejaculation should be considered above just a scrip of antibiotics. That cannot be good!!!!

Hello Boosh Baby - welcome to the forum!! Sounds like you've both had a hard time over the past 12 months. I certainly hope that you get some answers soon and some relief for your fiance.

Good luck with it all...

Re the blood in the sperm, it is probable that this is something separate to his GI issues but certainly needs to be checked out.

I wonder if when taking the biopsies they nicked something else??

Hang in there and hopefully he'll get all the answers he needs to get the proper treatment he needs asap.

G

Hi Guys,

Just wanted to thank you all for your information and supportive comments. I also wanted to give you a quick update on Lewis, he has been feeling really bad and then a little okay, on and off for the last few weeks, he has been back at work, which is a huge step for him.

His stool sample came back with a Calprotectin (inflammation) level of 96. So it's gone from 177 to 80 to 96. As 0-50 is normal, it is still classed as an abnormal result, the third of three abnormal results.

A week ago, on Friday, he was taken in for a full colonoscopy, we are now awaiting the results of this as well as the biopsy results from the sigmoidoscopy exam, which seem to be taking forever. The specialist who did his colonoscopy said it was a normal result and that we have to wait until the biopsy comes back for further info.

His GP had mentioned a Barium meal exam may be the next step if the colonoscopy game back normal. Have you guys got any advice on this, or can you suggest any other tests he should be requesting? It's on the National Health Service here in the UK, not done privately on insurance money so there is a limit to the types of things he can ask for.

The blood in the semen thing has stopped, which is good news, although Lewis has been complaining of itchy eyes on and off for the past 6-8 weeks, which we cannot seem to trace a specific reason for as he takes a hay fever tablet every day. Plus it's October now so I can't understand why his itchy eyes/hayfever would be getting worse as opposed to better, as the summer disappears and winter approached. Even at the height of summer with his hay fever he wasn't complaining like this! :ywow:

He has also been getting the itching in his rectum again. (as opposed to anus) he was given foam enema treatment for this the last time, so perhaps he needs more of this again, I'm not sure.

Anyway, he hasn't been able to get an appointment with his GP until the 19th, so hopefully all shall be revealed then.

Any advice, is as always, greatly appreciated. :rosette2:

Hi BB it all sounds like a bit of a journey for your fiance I hope you start to get some answers soon. I was originally being investigated privately and then when I had a perforated bowel I was switched to the NHS which I couldn't fault I managed to have every investigation going, colonoscopy, small bowel series, repeat CT scans, blood tests etc etc but it did take time. Do ask for certain investigations if you feel necessary and ask your GP for advice thats what they are there for have a list of questions with you also ask to be referred to a Gastrointerologist for further investigation... regarding the eye infection I also had a very bad eye irritation about 6 months before I ws diagnosed with Crohn's. Hope this is of some help.

Thanks Archie,

Lewis has an appointment scheduled with the gastroentarologist on the 18th, the day before his GP appointment, we had thought it might be cancelled being that it was scheduled way before his GP pushed for a lot of these tests, but as he has not had a cancellation letter he is going to go anyway.

I think a small bowl examination may be the next step, I take it this is not covered by the colonoscopy? I had thought that it was and it was the sigmoidoscopy which covered the large bowel, it's all so confusing.

We've been noting down his symptoms to take to the doctor, he still seems to get worse whenever he eats anything fatty or hard to digest, he has cut back on dairy and wheat almost altogether as it also seems to made him more bloated, although he has had a food allergy test so we know it is not this which is causing it.

Last night he had a shooting pain which orginated in the lower right quadrant of his abdoment and then travelled through to just above the bum, it was quite a strong pain as he did buckle over with it and cry out a bit. As always, we have no idea why.

He is also experiencing buring in the bowel and extreme nausea after going to the toilet, although he is still not doing this that frequently, which makes me wonder if it is IBD as going to the toilet often, does seem to be a major symptom for a lot of people here. oo:

His GP has mentioned steriod treatment, I think this is in the short term, has anyone here been on steriods for IBD, did they help?

We're a bit in the dark with all this, just wish the GP would hand us a torch. :ybatty:

Thanks again guys, any comments, info very much appreciated. :smile:

Hi again, the small bowel series looks at the passage of fluid thorugh the small intestines by a series of xrays taken over a couple of hours, you just have to take a barium meal first. It will show up any narrowing in the intestines which will indicate crohn's, the colonoscopy looks at the colon (large intestine) to see if any inflammation present it can also show a narrowing at the terminal ileum if the camera cannot pass through which is also a sign of crohns. A CT scan will also show any narrowing or anything else going on in the abdomen/pelvis and is also painless. It certainly sounds like he is having a flare of some sort and short term steroids maybe the answer they made me feel great, before he's given them they'll have to exclude an infection as steroids lower the immune system and therefore he may require antibiotics. Hang in there I felt pretty grim for a couple of months before they got to the bottom of it. :ysmile:

Hiya Boosh

Yeah I agree with above, and also to say that a course of Prednisolone and maybe Metronidazole will help to heal Lewis quickly. I was blocked 9 months ago and these 2 drugs have healed me nicely. No surgery required.
If Lewis starts vomiting whilst waiting for appt, go straight to A&E, don't hestitate! I had all the pains you're describing and once I started projectile vomiting I knew it was serious, I got an ambulance, my bowel was about to rupture!
I've had the shooting pains up the bum too, it hurts! They are spasms from the ani levator muscles, here's a linky

http://www.healthscout.com/ency/68/373/main.html

hope you get something sorted soon
Joan xxx

I agree any sharp pain with nausea / vomitting / temperature go to A&E, when I had the perforated bowel I had extreme dizziness and nausea but no vomitting and although there was pain it wasn't as painful as you would expect which actually put me off going to hospital, which was a mistake, I also was not running to the loo never really have so not everyone with IBS has this symptom, basically speaking I hesitated too long before I went to hospital as I had been about a month before and thought there was no point in going but i've learnt from my mistake so hopefully this will help you if you are deciding to go or not.

Boosh Baby said:

Lewis has an appointment scheduled with the gastroenterologist on the 18th, the day before his GP appointment, we had thought it might be cancelled being that it was scheduled way before his GP pushed for a lot of these tests, but as he has not had a cancellation letter he is going to go anyway.

Click to expand...

Always, always, go to hospital appointments because of the stupid systems they have, appointments are like gold dust - grasp it gently but firmly in both hands and move heaven and earth to attend it. Because if you miss it, and don't phone them at the time, you will end up being discharged from that clinic and will have to start the referral from the start.

Before you go write down all his symptoms, what has happened as well as his current symptoms. Include everything even if you don't think it is relevant or connected to his bowels - for example dry itchy eyes are an extra-intestinal manifestation of Crohn's/IBD. Write down your questions or you will forget them in the rush of the appointment. One of the questions is "so he's got all these symptoms what is it, and what can we do about it please?"...

Good luck!

Hi Folks,

Just wanted to give you all a quick update and seek some reassurance.

Lewis has been off work now for about a week and a half after having what I can only describe as a "flare up" it started with the Itchy eyes worsening and a bit of joint pain as well as vomiting. The following day his nausea had increased, his lethargy has also increased and he was passing blood again. Things have calmed down a little now, he still has nausea and is passing blood, every second day or so. The vomiting has stopped. He keeps getting sort of stabby, stitch like pains in his stomach and bowels, although these are not severe, they are causing him discomfort.

Lewis and I saw his Doctor yesterday morning, he was told the results of his biopsies (colonoscopy and sigmoidoscopy) have come back from the Lab and were completely normal. (despite the fact this should be good news, we were disappointed) The doctor wrote him a prescription for his standard nausea tablets e.t.c and told us to ask the gastroenterologist about starting Lewis on some steroid treatment and ask about what further tests could be done.

We were devastated to be honest, as we really thought he might finally get a diagnosis, seeing as we have had to push so hard to get the colonoscopy.

We saw the Gastro Specialist in the afternoon, to be honest it looked like he hadn't even taken the time to read Lewis' case notes and I had to fill in a lot of the gaps. We described Lewis' symptoms and it looked like the specialist was going to offer some weak functional diagnosis. (I told Lewis that if he tried to say it was all down to IBS I was going to go a bit mental, ha ha) He even commented that it looked like the drugs Lewis was on were managing his symptoms well. <---- What the Hell
No they don't, he's still sick as a dog, even though he is on 10 tablets a day!

He even said at one point, "Well at least from the biopsy's show he doesn't have H-Pylori infection, you see, H-Pylori infection is when.......(I was like, yes, we know what H-pylori is, he had it, that's how all this started! *rolls eyes* I swear I could have wept. :ybatty:

The Specialist added that Lewis' calprotectin (inflammation) levels from his stool samples, were not high enough to offer a diagnosis and that even though they were above normal, because they were not in the multiple hundreds (0-50 is normal, Lewis' first was 177, then 80, then 96) it meant it wasn't to be considered too out of the ordinary, as many patients experience high calprotectin levels. We asked about starting steroid treatment, but he remarked that even though Lewis has responded well to the Pred foam a month or so ago, and that the initial endoscope showed that Lewis' stomach lining is inflamed, that there was not enough information to go on any sort of IBD diagnosis, so he would not recommend this treatment yet.

After more discussion he agreed to refer Lewis for a CT scan to examine the small bowel. This should take place within the next four weeks. He said that following this, if a positive result (like IBD) came back he would be in touch to arrange treatment. If it came back normal he said he would recommend some functional medications to Lewis' GP (seriously, like what, if there was anything better to treat these symptoms, he should have been on it months ago!)

He said that if there was no improvement, then he would at that point be happy to refer Lewis' for a capsule endoscope. He offered Lewis a follow-up appointment, which has been scheduled for 16th of February 2011 and said that he would write a letter to Lewis' GP to prescribe a stool softener. <---too little too late)

So as you can probably tell, yesterday was not a positive experience for either of us. Lewis continues to be ill, we don't know when or even if he'll get a diagnosis and he is still only able (on his good weeks) to work half the days in a working month and is about to completely run out of sick pay. Things aren't looking good at the moment, people keep telling us we should be happy that the doctor haven't found anything seriously wrong with him, but we just can't see it that way, he really needs to know what is wrong with him and get the right medication.

Sorry for the moaning tone of this post, bit of a downer, still we should take comfort in the fact his GP is behind him and the specialist has agreed to refer him for more tests I guess. I think the fact this has gone on for 15 months and has been especially bad since January is just wearing us down now.

So I guess my question is, have any of you been though this sort of nightmare getting a diagnosis and if his scopes have come back normal, does that mean it is not IBD or could it be lurking in the small bowel?

Thanks for listening. x x x

I'm so sorry to hear all you are both going through. It's so frustrating and unfortunately there are many people here that go through all this crap trying to get a diagnosis. We have a club here ~ the Undiagnosed Club ~ and they are presently living this same nightmare............

http://www.crohnsforum.com/showthread.php?t=13113

So I guess my question is, have any of you been though this sort of nightmare getting a diagnosis and if his scopes have come back normal, does that mean it is not IBD or could it be lurking in the small bowel?

Click to expand...

Normal scopes does not mean he doesn't have IBD, it just may mean that the scope can't reach the affected area. As hard as it is continue to fight and push until you find the answers you need. I have been there with my daughter, it took her 18 months to be diagnosed and I know the frustration, fear and helplessness. Just remember you and Lewis are not alone in this and that may at least offer you both a little comfort.

Take care, :hug:
Dusty

Hiya Boosh & Lewis

Ok, time for a change!
You're in the UK, so it's your right to choose your hospital, your right to choose your specialist, and your GP has to comply whether he likes it or not!
Your docs are not taking this seriously, Lewis is bleeding and vomiting, WTF? This is NOT IBS!! Many on here have had 'normal' results, me included, but I didn't give up, I SCREAMED the bloody place down!!
You have to be assertive here, demand and insist for further investigations, and it's bollocks what the doc said about Lewis not being able to have Prednisolone cos of not enough information to go on? Inflamed stomach lining? HELLO!!!
God, I'm sorry, but it just makes my arsehole wink!
I had all this bullshit for 15 years! Until I screamed, then they got scared!

here's a linky, get moving on it, talk to the GP

http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

I wish you lotsa luck xxxxxxxxx

Hi all,

Thanks again for all your comments, Lewis read over the posts last night and visited the "Undiagnosed Club" Just reading other people's similar experiences cheered him up, mainly because there is a part of him that gets terrified every time a test comes back normal with that feeling of "is it all in my head?!" I have reassured him that it is not, you can't pass blood, have a red raw stomach lining and high calprotectin levels just because your brain might think it. I know that he's knows this, but sometimes he just needs reminded.

In terms of changing our specialist, thanks for the link Astra, I am willing to wait until after a CT Scan and Capsule Test before hanging this guy out to dry. The hospital is literally across the road from our flat too, so that is also a reason I know Lewis wants to keep going there. If at any point I feel Dr Clarke isn't pushing forward with Lewis, I will opt for another specialist like you suggested. I am assuming this is possible with NHS Scotland, I will make a note to check.

Admittedly, part of the reason this has gone on so long is because Lewis' original GP was so awful, when this all started 15 months ago, Lewis had to have "severe dyspepsia" for about 2/3 months before they would even test him for H-Pylori. His old GP also had an attitude which made Lewis start to feel guilty and self conscious about turning up at the clinic every week, complaining of the same issues. :angry-banghead:

Anyway, we got him a new GP in May and comparatively things have been moving quicker. :thumleft:

Speaking to him last night I compared this whole thing to a board game, like snakes and ladders, you roll the dice, get on to a new square, the "colonoscopy square" and think yes, finally progress, then you get the results back and find they are normal and you're suddenly shaking the dice again to see where you will go next. Well, now we've landed on the CT Scan square so I guess we just have to invest a bit of hope, wait for the letter, wait for the appointment, wait for the test, wait for the results and then see if this thing is going to turn into a snake or a ladder.

Having just re-read over what I have written above, it is clear I am actually losing my mind. :rof:

As always, I'll keep you posted and thanks again to all of you. :kiss:

Hiya Boosh

you're not losing your mind hun! You're frustrated!
I love the metaphor of snakes and ladders, so true!
Don't give up, you'll get answers soon
xxx

Hi there,

Just wanted to give you a quick update, Lewis was off work for the past 3 weeks, a combination of his stomach problems, wisdom tooth infection and eventual removal of 2 of them and to top it all off, a cold. (wonderful timing) However he has been back at work since Wednesday last week and feeling a bit better.

We saw his GP last week and received the results of his CT scan, surprise surprise, everything normal. :yfrown:

So it looks like the capsule scan is the next stage in the process.

We're both starting to wonder if his symptoms can be put down to a combination of severe gastritis caused by the H Pylori infection he had last year and IBS which he could have developed as a result of the infection affecting his stomach and making it more sensitive. Apart from the bleeding, which seems to have stopped, all his symptoms can be fitted into these two conditions. To be honest we're absolutely baffled at this stage and have no idea what is wrong with him. :confused2:

He's been taken off of Omeprazole and put onto lansoprazole. This seems to have helped, we have been extra extra careful with what he eats, wheat free bread and caffeine free tea for breakfast, pack of rice for lunch and fish and vegetables for dinner, followed by a dairy/wheat free pudding. It would seem having him eat nothing but this is having a positive result which again makes me wonder if it could be IBS afterall. Whatever it is, mentally thinking it is just IBS and gastritis seems to be helping him cope and at least the tests he's had so far seem to show he's not falling apart inside to the degree which we had feared.anda:

We're both feeling a lot more positive about it at the moment, it's the only thing we can do, we'll keep ploughing for answers and in the meantime he'll keep taking his pills, watching his diet and trying different medications/home remedies. As long as he can make it into work we won't face financial hardship and the whole thing will be a bit easier to cope with. His employer took 94 hours worth of sick pay off him in one at the end of last month, supposedly an overpayment, in June he had been told he was entitled to 12 weeks over a two year period. Turns out he was only ever entitled to 4 weeks worth, so he's completely out of sick pay now, and who the hell can live on government SSP, wouldn't even cover our debt payments!! ha ha

Anyway, as always, thank you all for your support and I will keep you updated hopefully things will continue to improve, or failing this we'll get some sort of diagnosis. One thing is for certain, the CT scan coming back normal is really making us question whether this is IBD or something else. :shifty-t:

Answers on a postcard? ha ha

Thanks

Erin x

Sorry it has been so long since I have updated on Lewis, who is now my husband. (yes, it has been that long)

Well since posting Lewis had a capsule scan, the results came back normal.

(So since Sept 2009 that is -

endoscope - normal (some inflammation)
Ultrasound - normal
Sigmoidoscopy - normal
Colonoscopy - normal
CT Scan - normal
Capsule Scan - normal

His Gastro-specialist has made a diagnosis of Functional Bowl Disorder, i.e IBS with the added complication of Gastritis.

At the moment Lewis is on:

Domperidone - for the constant nausea
Mebeverine - for the IBS
Lansprazole - for the Gastritis
Dulco-ease - stool softener
amitriptyline - low grade anti-depressant which is designed to help IBS

When he first started the Amitriptyline, he showed great improvement for the first 8 weeks, but then went back to being ill. This month has been particularly bad. Five weeks ago his GP (after he was pretty much abandoned by his Gastro-specialist) has put him on Fibre-Sure drink for constipation and for the anxiety he is experiencing being off work and during his time at work prescribed Prozac.

He has been on the Prozac for about 5 weeks and has shown no improvement, his stomach is in fact worse and mentally it has made no difference, in fact it has probably had a negative impact. He spoke to GP and comes off of it today. He has developed a more "fearful" personality over the last two years due to this condition, things which would not have phased him before now cause him anxiety, he worries endlessly about what he should be eating, how much sleep he gets, missing work, running out of money, going to College (he is supposed to start night classes in September) Just everything really, he just wants to be well and can't get passed the fact nothing seems to help and we have no answers or anywhere to look to get them.

He is still intermittently passing blood, the doctor told him that this was because of an anal fissure and prescribed a cream, but this last week, there has been blood in the toilet bowl, not when he wipes. (sorry to be so graphic) I am convinced they are wrong. He is also having a burning sensation around the area despite having not passed anything in 3 days. This of course is not to mention the fatigue, the throwing up every morning, frequent headaches, burning in his stomach and intermittent stabbing pains.

So two years on we are no further forward, he continues to be pretty much unable to work a full week (he's worked 2 days in the past 3 weeks) and at the moment is ploughing the depths of despair because he is beginning to realise there is no improvement and no proper diagnosis forthcoming.

I don't want to start him on an exclusion diet because frankly he already feels like a freak with his current diet and I don't think it would help with his emotional wellbeing. When his GP comes back from annual leave I may push for another stool Calprotectin test and if there is a sufficient level of inflammation (as there always is) we may ask for a trial on steroids I am unsure if this is the right thing to do, his specialist didn't seem to think so, but what if they work? It's worth the chance I think. Who knows, frankly the two of us have forgotten what life was like before he got ill. We just want a diagnosis, "functional bowl disorder" is a crap diagnosis and if it is this then why is he taking a pharmacy of drugs and nothing helps??!!

Wow, it has been a while!! Now you've gone and done it!! Married a chronie!! Cat-a-tonic has an Undiagnosed club in the Support section that is one of the most used threads on the entire forum. To me, that's such a telling truth! Good luck, I hope he doesn't stay in that club as long as many unfortunate sufferers do!!

I'm sorry to hear of your troubles, very similar to me honestly. Been through some of those meds (useless) and the Amitryptyline worked a few years for me so a bit longer than Lewis.

Has he had many blood tests done? Been tested for small bowel bacteria overgrowth (ot's a breath test)? Do you think it would be worthwhile getting a referral to a Rheumatologist who can look into auto-immune testing? As lots of auto-immune conditions cause bowel issues. I said before my Pill Cam, if it came back normal, I would pursue the auto-immune route with more vigour, but my test got cancelled.

I'm being fobbed off with IBS right now by Gastro but Rheumy is being wonderful.

As for steroids, I don't think it would do any harm to take a small trail. Predisone for example is often used, and if you respond to that, IBS should (although not always, depending on idiot Drs) be ruled out.