I've not been diagnosed - can anyone help me?

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sadhatter

Joined
Mar 22, 2010
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Hi everyone,

I'm new here, just found this forum whilst searching Google to try and find out what may be wrong with me, great forum!

I was wondering if anyone could tell me if they think I am suffering from IBS or some other inflammatory bowel dsease as I'm going crazy at the moment! Any advice would be so greatly received.

I've suffered from bowel problems for over 2 years now. I am 27 years old. The first time I noticed a problem was after breaking up with my girlfriend and the stress of all of that, I woke up one morning in 2007 and had an extremely bad pain in my abdominal area, below my stomach, around my belly button area. I thought it was maybe because I had slept all night and needed to go to the toilet, but after going to the toilet, the pain remained. It has never been right since.

I can remember a holiday we had and it was ruined because I was in constant pain with my abdominal area.

I went to the doctors and saw my GP about 6 times over the past 2 years, and each time was told I had IBS. I occasionally have diarrhoea (but doesn't everyone) and constipation. One time after going to the toilet, I noticed there was a lot of blood in the toilet and I really panicked, but realised the blood was from a smal fissure (tear). I get these fissures a lot. I also have mucus in my stools a lot. I don't have blood in my stools, only when I have the fissures.

I was prescribed fibre gel and then peppermint capsules. Nothing seems to have done a great deal although I did have a spell when I felt a bit better.

However, things came to a head this Christmas time. My abdominal pain was occurring now everyday and everyday was a struggle at work just to get through. I feel constantly nauseous and have abdominal pains on a daily basis. I don't know what is worse, the abdominal pain or the nausea. When I go to the toilet, still don't feel afterwards like I am fully relieved and the abdominal pain does not go away.

Every single day I would be putting a hot water bottle on my abdominal area just to try and relieve the discomfort and pain. I fell asleep with it on my tummy one night and now have a nice burn mark on my stomach that looks horrible and I've been told may not go away. I was getting home from work at 6.30pm and going to bed at 7/7.30pm, which is so unlike me, I used to be out all of the time and really active, like people my age are. My parents have been and continue to be extremely worried because they see how it is affecting my life (I live with my parents). I am just not myself.

I was spending all weekends in bed as I just couldn't get up I felt so awful. Again, my parents took me to the doctor, he just gave me something different to ty (which didn't help).

The abdominal pain was getting really bad and things came to a head about three weeks ago at work. I was sitting in my office at my desk and the pain began to get stronger, I had a cold sweat and felt so sick, it was the worst experience of my life. The pain is like a burning sensation around my belly button. Its so hard to explain to anyone what it feels like, the best I can describe it is I get a really dry mouth, I feel extremely sick, my legs feel like jelly and its generally just awful. I can even feel it when I am asleep, I wake up to turn over and its still there and I think, "Oh God how on earth am I going to get through the day at work tomorrow." Every day really is a battle and I am so fed up with it. I am getting very low and depressed with it. I just want my life back!

I ended up going to A&E at hospital, where I was told that I did seem to have some inflammation. Its strange because I can't say "Ouch it really hurts there" when someone feels it, its not tender, its too deep inside my system. It feels like its around my belly button area, its definitely not my stomach because its below that. At the hospital, the nurse took my temperature and said I had a slight fever and the problem is definitely not in my head, which was a relief because I thought I was going crazy.

I've been signed off work now for the past three weeks and have been no better at all. I am extremely tired all of the time (much more than I should be at my age) and I feel nauseous almost all of the time. I have lost a stone in weight in three weeks as I have no appetite whatsoever.

I've had three or four of these bad attacks like I had at work since. The last was so bad that I ended up at hospital again. I was asleep and I was having a dream and the pain was actually in my dream! I woke up from my dream and it was so bad, I had to call for my mum and ask her to take me to hospital, I was in tears with the pain. The doctor at the hospital said he was sure my pain was in my small intestine (just below my belly button).

I am currently on tramadol for pain relief and buscopan (anti-spasmodic). I asked the doctor if he thought IBS would be as bad as this and he said he didn't think so. He said what is also interesting is that every time he takes my temperature, I have a slight fever, 98/99, which is nothing major but isn't right and he doesn't understand why. All of my blood tests for pancreas, kidney, liver etc. have come back fine.

I paid to privately to see a consultant and he said he wanted to do an ultrasound, a colonoscopy, a test on my pancreas and then if they showed nothing an MRI scan. I paid to have the ultrasound done and it showed nothing, so I am now waiting to hear from the hospital for the colonoscopy as we cannot afford to pay for it privately. In the meantime, I have been off work for three weeks and have been signed off for a further two weeks until after easter, which I feel stressed about.

I feel really anxious now about what this is and I know that is not helping whatever it is. Even when I don't have bad abdominal pain, I feel nauseous, which is horrible in itself. I don't actually vomit, but would rather be sick than have the feeling I am going to be sick! I just can't see any light at the end of the tunnel, I'm literally just laying around in bed or on the sofa all of the time, I've not left the house for three weeks other than to go to the doctors or the hospital.
Right now it feels like my life is over, I'm worried about my job and my health, and I feel bad because I know it is affecting my parents a lot worrying about me.

Any help anyone could give and advice as to what you think it is would be greatly appreciated. I'm pretty desperate right now - do people think it is IBS still? I never thought IBS could hurt as much as this, when it comes on I am doubled up in pain that is so bad it makes me cry and I can hardly move. When it is not terrible pain, I can always feel it there, like a dull burning ache with nausea.

I have also been getting a lot of headaches, if that means anything, and dry mouth. I've gone from 11st 7 to 10st 8 in three weeks.

Thank you so much.
 
Hi Sadhatter
and welcome

glad you found us, there are a lot of people here who will empathise with you!
Me being one of them! Been there, done that!
Firstly, you're getting a scope, hopefully that will find something
Secondly, doesn't sound like IBS, more of an IBD such as Crohns or UC
Getting a dx is so hard
If you DO vomit go straight to ER, this might be an indication of an infection setting in, or you're narrowing and blocked.
When you get there, scream!
tell them you've got Crohns, and hopefully they will rush the scope thro, and get you on some IV steroids and morphine, and codeine
You shouldn't be suffering like this,
Do you know if the doc checked your CRP levels, these are inflammatory indicators that you're inflamed, ask him
In the meantime, get to ER
good luck, let us know how you are
Joan xx
 
Welcome SadHatter and sorry to hear you are feeling so bad! I would definetely get a colonoscopy done to see if you might be having issues at the iluem, where your small and large intestines connect. Generally the pain is in on your lower right side and can be on the right side of your belly button! If you have a flare-up, it can cause all the sypmtoms you mentioned. I have had pain so bad while I was grocery shopping I had to hold onto the cart to keep from falling down. Anyway, Good Luck and hope they can find the problem!!
 
i agree with joan,you must ask if you have had a full blood count and crp and esr,this will tell if you have an infection or an inflammation,dont give up ,took 2 years to get bindi diagnosed from ibs to ibd best of luck. karen
 
hi Sadhatter, welcome to the forum - really glad you found us!

ok, i don't know anyone with Ulcerative Colitis, so i can't really comment on the likelihood of it being that, but to me it does sound more like IBD than IBS... certainly there are many trademarks of Crohn's Disease in your description.

personally, i've gone through the low grade fever, the pain as you described, the fatigue and the feeling of nausea. fissures are a common factor in Crohn's sufferers too. also, when we have a bowel condition, whatever it is, very commonly it gets worse with upset and/or stress.. so it's not surprising that this seemed to hit a high when you and your girlfriend broke up.

you really need that diagnosis. the consultant that you saw privately - (i'm assuming you're in the UK) - can you get on his patient list on your local NHS hospital, and try to see him... or at least get a message via his secretary to put an urgent on the colonoscopy?

in the past, when i or one of my family have needed urgent medical help, we have paid privately to see someone, then explained we cannot pay private fees after that and that we want to be transferred to their NHS patient list. it works - try it.

meanwhile, if you can't eat, you could try something like Ensure - they are milk-shake type drinks which are full of nutrients and vitamins etc, perfect for someone who has diet restrictions or absorption issues. while you're not eating, you're not fuelling your body and the feelings of fatigue etc will get worse. you can buy these in a chemist, or get a load prescribed in one prescription by your gp.

let us know how you get on.. i hope you don't have to wait too much longer to find out what's causing this, and get some effective treatment.
 
Welcome Sadhatter! Wow your post brought back memories. I had the exact same problems except the fissures I dont get those. I had pain around the belly button area so bad and it didnt matter what I ate, it hurt the next day. My blood work never matched up with a low grade fever like dingbats. Test after test. CT scans were missing it, the only test that helped to confirm dx was a colonscopy. Many doctors scratching their heads. It really bothers me when Gp's don't let go of their egos and send you to see a specialists. Tramadol is ok but may not help your greatest pain, and buscopan didnt work for me, I have been using Bentylol.

Having a colonocopy will give you results immediately and more accurately. They usually take a bioposy too. Having said all this, even all the test I have had it took a year. I am hoping you get relief alot sooner. I was going through a break up at the time and custody battle. Stress is so not helpful. Keep pushing for a dx, it is one of the hardest diseases to dx. People dont have pain for nothing. There are many treatments, you have to find your combo for you. Good luck, keep us posted!!!
 
Hey everyone,

Thanks again for all of the replies, it means a lot. I was looking for some more advice... sorry to be graphic! I just went to the toilet and there was a lot of white in my stools...my stools were normal colour, but within them contained lots of white, one stool was even half white and half normal!

Does anyone have any idea what this means? I noticed it a little the other day too, but nowhere near as much as tonight.

Thanks for your help
 
sadhatter said:
Hey everyone,

Thanks again for all of the replies, it means a lot. I was looking for some more advice... sorry to be graphic! I just went to the toilet and there was a lot of white in my stools...my stools were normal colour, but within them contained lots of white, one stool was even half white and half normal!

Does anyone have any idea what this means? I noticed it a little the other day too, but nowhere near as much as tonight.

Thanks for your help
Click to expand...

It could be mucus or pus.
 
Hi Sad Hatter and welcome!

Agree with all above about the scope and CRP level, etc. I'm not a doctor... but I originally had UC and then was rediagnosed with Crohn's. From my experience, and from all I have read on this site, your descriptions sound more like Crohn's to me than UC.

Try not to stress too much about work. It will just make things worse. I know that's easier said than done, but you must try to take care of yourself right now.

I don't know the ins and outs of the health care system where you live (UK) but Joan always has good advice about going to the ER or A&E or whatever and screaming bloody hell so you can get some relief and not have to wait for a scope and some good medications so you don't have to suffer.

Keep us posted on your progress -be strong! - Amy
 
Hey,

Thanks for the replies, very helpful. The white in my stools was definitely not pus or mucus, I've had that before.

It was weird tonight, never seen it before....
 
Hey everyone,

Well I had a colonoscopy during the week, which didn't show anything unusual.... the consultant wants to do a test specifically on my small intestine now because that's generally the area my pain has been (around the belly button area) and a colonoscopy cannot show the small intestine. He wants to check for crohn's in the small intestine. Has anyone had crohn's in just the small intestine and has anyone had a colonoscopy which showed everything was OK and then later been diagnosed with crohn's? No signs of ulcerative colitis, which is great. The consultant is just a little concerned because I've lost over a stone in weight in a month and have been bleeding on occasions when going to the toilet, plus very bad abdominal pain which led me to have to go to A&E twice.

Any feedback would be much appreciated.

Thanks
 
Yes, I have Crohns in the small int. and colitis in the colon. I had been told for YEARS all I had was IBS. But after 1 year of pain and diar. finally a test on the small intestine showed Crohns....be sure to check for Celiac, too...best wishes!!!!
 
Hi,

Well, I am freaking out right now as my bowel movement last night, the stools were completely white, not your normal brown colour!

I'm going to the doctors first thing tomorrow. Has anyone had this before? This is the second time I have noticed this, it happened just before I had my colonoscopy last week so its not due to the colonoscopy it has happened.

There was one tiny little trace of brown in the stools, the rest were totally white. It also had a really strange odour, it didn't even smell like a normal bowel movement if that makes any sense?!

It is very strange because my abdominal pain has been nowhere near my gall bladder, which I have read can be a cause of white stools, its been around my belly button. My blood tests have all come back as normal, which were for celiac disease, and pancreas and liver and showed no signs of inflammation or abnormality.

My ultra sound also showed my liver, kidneys, gall bladder as all being totally fine and normal. I haven't had a barium test. Searches on the net say white stools can be signs of a tumour, liver problems, intestine problems, basically everything listed was horrible! Says you should see your doctor immediately...

But I feel terrible today and I feel I am being affected mentally now very much so as well as physically. I know something is not right...

A very worried sadhatter!
 
You have every right to feel worried, I have never in my 18 yrs of dx had a white bm. You really do need to see a Gi and soon. Having all this worry makes the disease worse. Frustrating when something happens and you can't figure it all out. Let us know what you decide to do. Hang tight ok? Hugs.
 
I had a few white bms when i had GB problems it could be absence of bile or you have a stone in your bile ducts I hurt all over my belly. I also got jaundiced you are not yellow are you. You really have to go in fluorescent light to see that. Also my urine turned black. I knew I was in trouble then. Just keep on pushing and complaining. They have to listen to you eventually. They treated me for autoimmune hepatitis then. Later I found out I had Crohns. They walked around in circles for years many Drs. later I had a hida scan and it showed blockage in my biliary tree. When they went in he said I had GB disease for 15-20 yrs. I also was told I was crazy there was nothing wrong. But I kept going to the dr. and complaining. They told me I was drug seeking. But who can stand constant pain. Just listen to your instincts and keep on plugging. Eventually they will figure it out.
 
Hey,

Well I have just been to my GP. He said he wasn't overly worried that I had white stools and that if they are still like it in a week to go back and see him. He said the fact that my blood tests for liver, kidneys, pancreas and bilirubin test have all come back as normal and my ultra sound and colonoscopy were normal means he is not as worried. He said I don't look jaundice which is good.

Seems a bit strange to me that I've got this abdominal pain and nausea and have now developed these white stools. I had white stools the last time I had a BM before my colonoscopy and then despite having the laxatives which flushed out my whole system, my next three BMs after the colonoscopy went back to being white. But I guess he's the GP and not me, so he knows best.

Thank you for your support everyone.
 
HI Sadhatter, I noticed you saw your GP? I think you may need to see a Gi, your Gp should recommend one so you can get better answers. I too have normal blood and other test, but I still have LRQ dull pain or aches. You may need to get a second opinion. This disease is very hard to diagnose. Just wondering. Gp's are not specialist, and my Gp never over rides what my GI says. Keep us posted.
 
Hey, thanks for the reply hun :)

Well I'm awaiting a letter from the consultant at the hospital who did my colonoscopy as he wants to do a capsule endoscopy and he's also doing more blood tests, so I'm awaiting the letter currently, hopefully the capsule endoscopy will be done within the next 6 weeks. This is so they can see my small intestine and rule out small bowel crohn's. He also took biopsies so I guess he will be testing those. He said apart from some mild inflammation in the rectal area, my colonoscopy was fine and showed no abnormalities.

I've been signed off from work today for another 2 weeks, so we'll see what happens. Hopefully my stools won't be white any more and will return to normal! Although, even if they do, I'm not sure it was right that it happened anyway? My GP really didn't seem overly worried though, he said that my ultra sound and colonoscopy were both fine, my blood tests for liver, kidneys and pancreas and bilirubin have all come back fine so all of the signs are good. At this point he thinks the signs point to IBS.

I'm still pretty concerned about the white stools though, I only have to go back and see him if they are still like it in a week. Just seems odd to me considering I've also been very nauseous and having stomach cramps, two of which forced me to go to A&E. I'd have been worried with it anyway, let alone with the other symptoms I have had. But he's the doctor and I suppose there's no point going to see him unless I am going to listen to him. I was expecting the worst considering what I had read on the Internet, which said everywhere that it can be life threatening and threw up a whole host of awful things like tumors and pancreatic cancer and to see your GP immediately. I was in tears for an hour after and shaking and have been beside myself with worry all weekend, so it was a big surprise today when he seemed pretty blasé about it!
 
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I know this sounds strange but next time you have a "whitish" poop, take a picture of it. Many people do that for blood, to show how much and your doctor can make an assessment. Good luck with that. I have not had a white bm so I can't comment. If you are taking pills it could be mixed in. A picture will rule out some doubt for you doctor.
 
Hey,

Funnily enough I did take a photo before and took it with me today but he didn't seem to want to see it, I mentioned I had it but he didn't reply to it and started talking about something else so I don't think he was too keen!
 
Hi there sadhatter - I am struggling to get my own dx as well and one thing I've learned is to not automatically place all my faith in doctors! You need to be prepared to be your own best advocate! Doctors don't actually know everything and a good doctor would tell you that! You need to trust that you know you're own body and that you have the right to guard your health! The fact that your GP has not referred you to a GI is an indication that he/she may not be taking you seriously and you don't deserve that! I have been in that situation and let me tell you that the best thing you can do for yourself is demand!! :) You sound like a very polite person and so it may be hard to push youself to ask more of your doctors - but it will be better for you in the long run. I am terribly quiet and I actually want to be a doctor myself, so tend to shy away from questioning them. However, when it comes to my own body - I know when something is wrong and I've gotten to where I'm not affraid to say "thank you, doctor, for your help, but I'd like to be referred to someone else." Just because tests are coming back negative does not mean you're not dealing with something...Your GP should act as a starting off point to your dx, not the final say in whether something is bothering you. I hope you can find a doctor that makes you feel as though he/she is listening and that you get the answers you're looking for!
 
Hey- good shout rach!

I wasn't QUITE so polite!
I lay on the floor and screamed blue murder! I refused to move til my GP referred me.
I had been fobbed off for 15 years, I was in agony, I was told I had IBS too.
When I eventually got to see a consultant, I broke down and cried with relief when he said 'you and me, we're gonna be friends forever' and he hugged me.
I got a dx, and he also said IBS doesn't exist, there's always a reason for the symptoms we have.
I changed my GP, and found a new one who is very sympathetic.
My advice? go back to GP and demand a referral, it's your right, and only take the word as gospel from a specialist in IBD
good luck
xxx
 
You asked if anyone has had a normal colonoscopy result but still had Crohns....yes! That happened to me.

I started having symptoms in May 2009. Had a colonoscopy in Oct 2009 which was normal. My symptoms returned with a vengeance a few months later. A CT scan showed I have scar tissue in my small intestine. Had a second colonoscopy and Crohns was evident everywhere at that time.

So, even though you had a normal result the first time, it would be helpful to have a CT scan to help them pinpoint the area of inflammation. Not a fun test because you will have to drink a barium which tastes yucky.

Don't despair. Keep pushing your doctors and you will have a diagnosis soon, I hope.
 
I agree with all the advice from others here. Insist that you are referred. You know when your own body is going wrong. I was pretty insistent and it still took three years to diagnose. I had lots of tests which came back normal - 2 CTs, 2 colonoscopies, 2 gastroscopies, blood tests blah blah...then I had the capsule endoscopy and they found the Crohn's in the small bowel. Please keep pushing till you get a diagnosis. I agree with Astra that the old IBS chestnut is a bit suspect. White bms are not normal.
keep us posted,
Gail
xx
 
Hey everyone, thank you so much for your kind advice and your feedback from your own experiences. It helps so much.

My GP did refer me to the GI to be fair to him, that is why I ended up having a colonoscopy last week (although I was waiting for the colonoscopy for weeks and weeks). They eventually brought it forward because I had a little blood in my stools and on the toilet paper after going to the loo (this has happened a few times in the past few months). He said after the colonoscopy I had a couple of little haemorrhoids, which he thought would explain the traces of blood in my stools. On the form after that he gave to both my GP and I, he wrote that he wants to do a capsule endoscopy to rule our small bowel crohn's but his initial diagnosis at this stage is IBS, which I'm really not convinced about.

Of course, since then I have had these 3 white bowel movements. I had another bowel movement this afternoon and thank god it was returning to a normal colour, and I've just had another BM which was a normal colour but I did have diarrhoea. At least it seems the white stools have gone now.

It seemed strange to me though because directly before I began taking the laxatives for the colonoscopy, my BM was white which worried me and I told the GI on the phone and he didn't comment on it. Then I took the laxatives which obviously clear out your whole system and when my stools began to return to a more solid state, they went back to being white (even worse than before). So it seems odd to me.

I'm just waiting now for the letter to come through from the GI for the capsule endoscopy to look at my small bowel, it could take up to 6 weeks he said. I have a consultation with him on May 11th at the hospital and he said by then he's hoping to have the test done and be able to tell me I either have crohn's or IBS.

I don't know... is white BMs a symptom of crohn's? Sounds a bit disgusting, but the BMs have a really strong and horrible odour, they don't even smell like a normal poop smell, its horrible, its like a musty smell, but its so strong. It has little traces of blood and orangey stringy mucus stuff on it too... :(
 
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Hey,

Is anyone here taking amitriptyline? I've been taking 2 a night and was told by my GP yesterday to up it to 3 a night and see how I get on, but I feel sooooo tired and spaced out today, like I'm not really here, so light headed! Its really weird!

Anyone else had this? Has anyone found it helps? Obviously I have not yet been diagnosed with anything, but it does seem to be relieving my stomach cramps so maybe they are stress/anxiety related?!
 
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I've tried amitriptyline but it didn't do anything for me except make me suuuuper tired. I'm now trying nortriptyline, which is supposed to make you less sleepy, but I'm still pretty out of it. If amitriptyline is helping you, maybe ask your doc to try its less drousey cousin nortriptyline. I hope you start feeling better soon
 
Hi sadhatter
Amitryptyline is a very strong anti depressant, so dont just stop them, you need to taper! If you're taking 3 at bedtime, no wonder you're cabbaged!
just a thought! But one of the side effects of amytriptyline are light coloured stools, which means you're not producing enough bile, which makes poo brown,
xxx
 
Sadhatter
Keep with your GI dr. @ this point. I have had normal colonoscopes while having this disease. Remember we have a lot of gut many many feet. They can't visualize all of it. This disease hides. The disease could be anywhere from the mouth to the anus. It takes some doing to pin point the area. My GI doc has seen ulcers throughout my gut. I have never had a pill cam or whatever it is called. But it took many years and several GI docs to find the dx. of Crohns. He finally found it by doing a Prometheus test it was a blood test. This came back positive. My doc even said that sometimes it will come back neg. and later pos. so this just shows how difficult it is to pin point. I can't take pred anymore but can take pentasa. Pred made me have serious mental issues. So I hope and pray I continue to have luck with my Pentasa. I have always had bowel issues. These became more serious in 1986. Remember I told you i became very sick and they told me I had autoimmune hep. But my GI doc tells me it was my Crohns all along. I don't know if you know this but the liver filters all blood from the intestines. So he told me if you have an infection in your bowel it can inflame the liver. I was just diagnosed Jan.2009 after I continued to have pain and diarrhea after my GB had been removed. Go figure .
Bethy
 
Sadhatter,

I personally didn't have much succes with conventional medical treatments...mainly drugs!

I would strongly recommend looking at your diet and would highly recommend the Specific Carb Diet or SCD. I found things settled down for me within the first week.

I know you're being bombarded with info...but I do strongly suggest you consider your diet!!

Good Luck!
RobK
 
Hey everyone,

Thanks for the feedback, all things worth considering :)

Astra - are you sure amytriptaline can cause white/pale stools? It doesn't say anything in the leaflet that's with the tablets, and I can't find anything about it on Google and my GP never mentioned anything lol
 
Hi sadhatter

Yes I saw it on a link that I found last night, I will try to get it for you xx
 
Hey, thanks Astra, that's so kind of you :)

I feel a bit better today thankfully, and did yesterday too, hardly any abdominal pain, just feeling pretty spaced out from these tablets!

Is it possible to diagnose Crohn's still when you are feeling better and maybe in remission? Or is it much harder?

I just wish my colonoscopy and pill endoscopy were done when I was having the really bad abdominal pain... :(

I'm really hoping the pill endoscopy shows something or I reckon they'll put it down to IBS which I really don't think it is (neither does my mum), too many symptoms... I also read that IBS doesn't affect people during sleep because the bowel relaxes, but my pain has been really bad at night sometimes, even waking me up at 3am in my sleep and causing me to go to A&E...

I've got a meeting at work on Tuesday with occupational health because I've been off sick for 5 weeks, that should be fun... (not!)
 
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I take 2 amitryptyline at night to help me sleep. I was prescribed it for anxiety and depression months before I was diagnosed but it didn't do anything for my bowel symptoms at all. Now that I'm on Prednisolone, I can't sleep without also taking the amitryptaline so I'm carrying on with it for the time being. The Pred makes me alert and full of energy so I don't get the spacey, tired out effects.
 
Welcome Sad Hatter, I've just sat and read all the posts and mainly agree with everyone!! I know the dry mouth, pain in the belly button, legs like jelly feeling.. Usually just before I need the loo, but mostly it will stay there and I will just try to sleep it off... Doesn't always work! And the smell, reminds me of a new born babies bm. Lol! I love how you can only say these kinds of things on here and think ooohh yeah.. I know exactly what you mean!! White poop though.. Never had that, I think I've had every other colour under the sun though. Could be something your eating or not eating?? I got to say though, you Docs seems to be moving very quickly. Took me 3 years to get diagnosed.. from being 13 nd going to a doc and having a Xray to say I had the worst constapation hes ever seen (very embarrassing!!) too being 17 and saying to my GP something is wrong, it's not IBS so sort it now!!! It works though, just scream and shout and ring and ring and ring!! I'd highly recommend asking for Codeine Phosphate your doc.. I had it ever since I was diagnosed and to be honest, I don't think I would have left my house without it, and I couldn't go out now without it, fearing an accident! It's mainly a pain killer, but it helps slow the bms down alot!!! I have officially been diagnosed with Crohn's but my doctor does say I have Colitis too, though I need him to explain that further with me as to my understanding I have crohn's in my small intestines and colitis in my colon?? But I've never had my small intestines checked out?? It can get very confusing!! So just keep at it and keep strong! At the end of the day, it's your health and your body and you know what's right and what's wrong!! But I'd also recommend if your having the bad pain by your belly button to eat BLAND HORRIBLE BORING food, it may be horrible, but it helps with the pain, and ginger nut biscuits for the sickness, though not too many as you can get bad heartburn lol!! Keep us all updated. We like to know what's happening with our fellow Crohnies!!
x
 
Hey,

Thank you so much for the replies!!! Vicky, I wouldn't say my docs have moved that quickly really lol, I've been over 10 times since 2008 about this and kept being told IBS but its got much worse this year...
 
Hey everyone,

Well I've been feeling a lot better the past couple of days, in fact I could actually say that today I've felt almost normal! I've no idea why the improvement, its so strange, I don't get this thing at all, its weird! But I'm pleased!

If I have crohn's, would I have times when I feel fine like this? Considering I'm not on any treatment for crohn's (if I have it)?

I've started thinking today, "Maybe I'm OK and it will just go away" although my mum is saying not to get too carried away with myself just because I've had one good day hehe Whenever I've felt like this, it always comes back to bite me :(

There's just no correlation in it, best I have felt today in the past 5/6 weeks... I just hope when they do the capsule endoscopy if I have crohn's they haven't waited so long its gone away, they find nothing, then it all flares up again...
 
Hi Sadhatter

Yes you will get remission days and relapse days, it's an unpredictable bitch our Crohns! Just relax now and revel in the bit of peace! Unfortunately tho, it is a hard one to diagnose cos like you said, there might not be any inflammation when you go for scope. If you do have Crohns tho, I'm afraid it'll never 'go away'.
Good luck with the scope, and don't be fobbed off with a dx of IBS! I was, for 15 years! Remember, you do NOT bleed from your bum with IBS!! You do NOT get white poo from IBS!!
You can always get a second opinion.
xxx
 
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sadhatter, I have read fast through all of these postings, so if I am Incorrect or am Repeating please excuss me.
I had Surgery July 2008, Scar Tissue from Original Surgery about 15 years previously.
I had a (Spirited) Discussion with the GI Specialist, I told him I Had Active Crohn's!
He said The Science Didn't Back it. (Blood Test, CT Scan) Colonoscopy which couldn't get beyond Scar Tissue build up.
After Surgery It was Discovered Beyond The Scar Tissue (Moderate Crohn's)
They Claimed I was Disease free, I argued The Physical Evidence and The Disease Proved Different and I should be on Humira. What about the Small Intestine?
I was Ignored!!
I have been No Better and getting Worse since and maybe getting Humira Friday!
Major Pain, Frustration, Lack of Diagnosis, So many Things?
NOW Why I carried on Is because I think Both of Our situations ARE very similar.
I know about being soooo Frustrated when it is Sooo obvious to You!
I really hope you get a solution, I was Diagnosed about 1993 (Blockage).
Hopefully Not Crohn's but, At least something that can be managed!
Don't give up and be persistant. It's nice to have this sight as a resource.
I know little compared to these folks.
I wish you well, Archer........
 
I would like to add, After my first surgery I had about 5 Years Symptom Free!
I don't like to be all negative.
I call it hit the ground Running.
When I do have Good Spells I get a lot done on my list of to do's and I be sure to add in some of The Fun things to do also!
 
Hey, thanks for the replies you two, it means a lot... well I had a BM earlier and was very constipated but it wasn't white! :) Did have blood in it though :(

And ever since I don't feel too good again, I feel really nauseous again.

I don't understand this at all :(
 
2008, 10 times.. to me that brilliant. I'm currently in a flare, was hospitilized and I'm still waiting to see my Consultant, and I've got two of them now and I've still got to wait until te end of the month, and that could just be a chat over the phone!! Sometimes, I hate the NHS, but without it, I'd probably be dead so.. it's got to be good for something!! I LOVE good days! Even in this horrible flare I'm having I had a good day yesterday! I took an extra few Codiene in the morning so I could go see my Mum who lives about a 5 min walk up the road as I've been stuck in my house for the past god knows how long, and taking those extra tablets made me feel great for about 24 hours! God it was bliss! Back to square one now, but it's nice to have the good days to remind you it will get better eventually. You just got to have the faith! Did you try the ginger for sickness and nausea?? I'm eating them as we speak... Though I am on the Pred too so I got to be careful, I just haven't stopped eating, and with violent BMs, it's not good LOL! Do you have lots of blood?? I can't remember reading whether you wrote much about it? And I'm not going back through the posts lol! I usually bleed only in a flare and it's got to be bad (How I know this time is awful!) but it's only usually either a little on the toilet roll and bright red, or it looks like I've drank tomatoe juice or something?? But that's only really bad, but my Mum bleeds nearly every morning, even when she's not that bad. I suppose everyone is very different with their symptoms and everything. I was just wondering really? Hope your feeling better!
 
Hey Vicky,

Cheers for the reply, bless you, do you feel like you're on the mend a little now?

Its only a little bit of blood usually on the toilet paper and maybe sometimes a little on my stools, but that's it.

I'm seeing occupational health tomorrow at work as I've been off sick for a few weeks. Can't believe I've been off all this time and still not been diagnosed! Just waiting for a letter from the hospital for a capsule endoscopy. Hoping to go back to work either end of this week or beginning of next week, not sure how I will feel and get on but I won't know until I try I suppose!

Do you work Vicky? If so, how do you get on with your crohn's?

Maybe I don't have crohn's, but I guess it has to be something! I'll be so annoyed if I just get the "IBS" label AGAIN!
 
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sadhatter

Please don't accept a dx of IBS!
My gastro said it doesn't exist, there's always a reason why we have the symptoms we have (that's his opinion, not mine) I was told for 15 years I had IBS by my GP, if I knew then wot I know now, I wouldn't have wasted all those years being sad, unhappy and suicidal,
And in bloody agony!!
Lie on the floor and scream, I did, and it worked! not long before that I think my GP was gonna give me a lobotomy!!
Anyway I got my dx, and the rest is history.
good luck
xxx
 
Hey Joan,

I won't accept IBS I promise, although if the GI does eventually say it is that, I'm not sure what else I can do. I certainly don't believe having the amount of abdominal pain I have had can be down to IBS, pain that is so bad it even comes into my dream during heavy sleep and then I wake up and it is excruciating?! Nausea, fatigue, blood and mucus in stools (although he says these could be hemmies). Blood tests have all been normal and no signs of inflammation in my blood tests, ultra sound, colonoscopy all normal.... I give up! Bloody thing!!!!
 
Hey Sadhatter,
Totally agree with Joan. I got told I had IBS aswell. I thought 'bloody hell, if this is IBS then how the heck do people manage to live any kind of life!!' My symptoms went on for three years and I had normal colonoscopies, ultrasounds and CT scans. (Mind you I had had very mild symptoms for twenty years which I was told was IBS). I had lots of blood tests too and only a few showed any anaemia or raised count. Most were normal. Yet when I had the capsule endoscopy there was the inflammation, scarring and ulceration for all to see.
Don't be fobbed off. You need to know what it is to get treatment. Your symptoms are not trivial or normal.
Gail
xx
 
Hey mate, that's so weird you said that, "I thought if this is IBS how do people live normal lives?" because I have thought EXACTLY the same thing!

If what I have been suffering with is IBS I would be absolutely amazed. I have suffered with migraines since I was 4 years old and have broken various bones playing football when I was younger so I have a pretty high pain threshold.

I guess the problem is that IBS and Crohn's have a lot of the same symptoms, which makes it hard for them to diagnose. I just wish there wasn't all of this bloody waiting around to get told what is wrong with you, that makes half of it worse and makes you anxious and depressed and feel half the time like a hypochondriac.

I'd say the symptoms I've had that would possibly suggest crohn's and not IBS are that I have had the abdominal pain during the night a lot and during sleep and have read that with IBS the bowel relaxes so people don't have pain during sleep. I've also had a slight fever a lot that my GP doesn't understand why I have it every time he takes my temperature and I've had some blood in my stools and white stools plus such high fatigue. I'd doubt you get that with IBS?!

Roll on my capsule endoscopy. I'm actually feeling a bit better this past few days apart from some slight nausea so I hope the crohn's doesn't disappear when I have my capsule endoscopy and I actually have crohn's and carry on my life not knowing it!

My cousin actually has crohn's and he had 3 colonoscopies, barium mill, 2 capsule endoscopies, ultrasound's, CT scans and blood tests and everything came up normal for 2 years. Eventually, he got these lumps come up in his mouth and they took biopsies and diagnosed crohn's. If that didn't happen he'd still to this day not know he had it and would be struggling on wondering why he was different to everyone else. Crazy!

I'm just thankful I've been feeling a bit better the past few days. I start thinking then maybe I am OK and it is not crohn's, but I've been like this in the past and then it gets really bad again a few days or weeks later and I'm like, "Here we go again..." Have been getting told I have IBS for 3 years, its only this past few weeks its gotten so bad and things have come to a head with me demanding tests.

I bet it really cheers you up reading my posts guys! :D
 
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Aw sadhatter

we're here cos we care, and we've all been there and been frustrated too! and, see, your cousin went thro the same thing too!
I can really empathise on the anxiety and depression thang! I thought I was going mental! Everyone else was just soooooo pissed off with me, but I was determined and angry, and I got my dx. And you will too! just keep demanding, it's your right!
Joan xxx
 
Hey everyone,

Well I've been struggling this afternoon with nausea and a bit of abdominal pain. I just had a BM and it was half normal colour and half white again :( Also some blood on the paper after wiping.

Not sure what to think. Weird that it was half normal and half white. I really don't know anymore.
 
Oh sorry you're poorly again Sadhatter. These symptoms are pretty persistent aren't they? Make sure you push your doc to get the endoscopy done. I'm not a doc but my own view is that IBS may well be a mild form of Crohn's. Symptoms of IBS that I had for years and years all went away when I was prescribed Prednisolone (steroids). It was a revelation - I thought, My God, this is how normal people feel - they can't feel their bowel at all!!!
Even if you have IBS you need some treatment - maybe the doc might prescribe something to try.
Gail
xx
 
Hey Gail,

Thanks :) I'm just waiting for a letter from the hospital for my capsule endoscopy so will see what happens then. If I have another white BM I am going back to my GP...
 
Did your doctor prescribe it for anxiety or IBS? It has well documented positive IBS side effects.

I was taking Imiprimine for a few weeks - my shrink recommended it as an antispasmodic while I was having a tough tme with my pred taper. I think it's in the same class as amitriptyline - a tricyclic antidepressant.

It was GLORIOUS. A few side effects (lightheadedness, edema, dry mouth) but it worked like a champ in controling the spasms and urgency. I did not notice any difference in my stools.

I suggest you make sure your GI knows you are on it - it could be masking some symptoms.

Good luck! -Amy
 
Enterolab. com is a must for you.

Gluten intolerance.... IBD.... Candidiasis any of this things. You need a good test. Comprehensive Digestive Stool Analysis (cdsa) ????? Everything is going to be there... Enterolab. com to test food reaction and intolerances...
 
Hey,

My GI recommended the amitriptyline. I'm not feeling good today, abdominal pain again that's about a 6 out of 10 and I feel nauseous.

The amitriptyline certainly do make me feel very tired and light headed, almost like you're in a bit of a dream.

They were prescribed to see if they make any difference to my symptoms, maybe to see if it was IBS but also because I was getting quite anxious about the whole situation and worrying what it is whilst I am having tests. My GP didn't seem overly worried when I had white stools a fortnight ago. He said to go back and see him if they are like it in a week's time. They returned to a normal colour, until last night when, like I say, they were half normal colour and half white...
 
Hey,

Well just an update really for those of you who have been following my story and helping me, which means so much to me.

I've been back at work this past week on reduced hours, working 9 till 2 rather than 9 till 5. Its been very tiring, but I've managed to get through it even though I have still not felt too well at all.

I called the hospital twice during this time and they looked me up on the system to tell me that there is still NOTHING on the system for my next test, which is a capsule endoscopy. No date, nothing. Apparently my consultant has been on holiday for two weeks. On both occasions the receptionist said she'd get him to call me back and he hasn't. It really is getting ridiculous. How long is someone supposed to put their life on hold like this?

I had my colonoscopy done 3 weeks ago now and I was supposed to be referred for this capsule endoscopy to look for possible crohn's in my small intestine within a week, two weeks max. Its now been three weeks and I've not even got a date for the test! I have a consultation with my GI on May 11th, by which time he said he hoped to have had a capsule endoscopy, pancreas test and an MRI done, so we could discuss the findings at my consultation. My mum and I don't think I will even have had a single test done by that point, so there'll be nothing to even discuss at the consultation. At the moment, I am on amitriptyline, taking 1 per day because anymore made me feel so spaced out and light headed I couldn't function anyway. I have co-codamol as a painkiller and that is it.

The past week I have had excruciating abdominal pain on a further two occasions, once on Tuesday night and again last night. Thankfully it didn't happen at work and by the morning had subsided somewhat so it was at least bearable or there's no way I would have been able to go to work again. I've also had these white stools again twice. Its like I have very pale, almost white stools a couple of times, then they go back to normal and then a few days later go back to being very pale again. I'm no doctor but it seems to me that they are definitely linked and very important to my case.

My aunty works at our local hospital and she was talking to a retired GP. She mentioned my case to him and he said that without seeing me his initial thoughts would be cholecystitis / cholangitis (infection of the bile duct), which basically is gallstones (or like these crystal things) that go from your gallbladder into your digestive tract and they block the bile duct which is why you get white stools. He said it is excruciating pain. What doesn't make sense though is my ultrasound showed my gallbladder was fine and my billrubin count was normal, when it would be high if you had gallstones. However, I guess if they have moved into my digestive tract they won't be shown. I don't know, don't know anything anymore.

I know it sounds very OTT and like I am a hypochondriac, but I actually think I may have two separate issues. The excruciating pains that have led me to A&E on two occasions (and would have been more if I thought they'd do anything worthwhile) have not happened in the past 2 years and are different to the nausea and pain that I've had previously. I've read on the net this cholecystitis / cholangitis is more common in people with crohn's. Or maybe they are both the same pain but just more intense sometimes than others. I really don't know. I guess I won't know until they do these tests, it is all just speculation. There's no point even going to A&E anymore, all they do is make me sit in the waiting room for hours on end, then give me painkillers and tell me that I have to wait for my tests to be done and there is nothing more they can do. Better off staying at home in bed than sitting in that waiting room.

I do know that I am so fed up with being ill. Aside from calling the hospital everyday and asking them for help and that I am still unwell and something is wrong I don't know what else I can do. Neither do my parents, who are both extremely worried about me and also know something is wrong. My dad had to walk out of the room the other night because he was close to tears as he could't see me suffering anymore. What makes it difficult is that the receptionist you speak to is very nice and says she has crohn's herself and knows the stress I am experiencing and that is a horrible time. She says she will speak to the GI and get him to call, which is a very reasonable answer, but he never does call. Am I supposed to be dying before they do anything?

I thought once they'd done the colonoscopy, I would be having the tests done relatively quickly, it is like I have disappeared off the radar. Why?

So I am facing another week (and many more I assume yet) at work not knowing if A) I will even make it into work and B) If I will be so ill I have to come home. The pain is so bad sometimes it reduces me to tears. It is embarrassing if it happens at work, even though people are very understanding. My boss would like me to go back full-time this week, even though occupational health recommended me to go back on reduced hours. I do understand my boss wanting me back full-time and don't blame him, he's a nice enough guy and it is a business, not a charity for me. My mum is saying she doesn't even think I should be at work, let alone full-time. I'm also booked on a training course on Thursday from 9 till 6 which I have to attend, so I don't know how I will get on that day, not looking forward to it. It is not because I don't want to work, I really don't mind my job, I just don't feel like doing anything at the moment. I have a season ticket at my local football (soccer) team and have missed the last 8 games of the season because of this. That's when you know I am not well when I miss my football! Everything is such a mess right now, I don't have any sort of social life, I can't plan anything. I don't even eat at work from fear it will make my pain much worse.

Do people with crohn's have excruciating pain that eases within a few hours sometimes (don't get me wrong, I can still feel it and feel unwell but its more bearable) or does this seem like something else? Its like it goes really inflammed suddenly. I've not seen anyone mention these pale stools on here either. My stools also had blood in again last week when they were pale.

It is getting stupid :(

A very worried and unhappy sadhatter
 
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Hi Sadhatter,
I really feel for you. I went a ridiculously long time feeling very very poorly and I can completely understand how you feel. The NHS is sooooooo slow. I was constantly on at the hospital too but the system was so clogged up that the tests took forever! Keep on at them. It's terrible that you have to do that but it's the only way. Also wondered if your GP can hurry things up a bit?
Yes, the pain can be really excruciating and it can come and go within hours. I've not had pain like in my life and couldn't begin to explain it to anyone. But the fact that you look ok on the outside combined with the fact that it can come on suddenly and go just as suddenly makes you feel paranoid that people with think you're exaggerating!
You WILL get there. It seems interminable now but hang in there because it will get better. Let us know when your hear anything
Gail
xx
 
I think you need a new GI specialist immediately.
This is what the guy from Mayo Clinic says:

"White stool at any age is not normal and should be evaluated promptly by a doctor. White stool is caused by a lack of bile, which may indicate a serious underlying problem in the liver, gallbladder or small intestine."

http://www.mayoclinic.com/health/white-stool/AN01724

When you stool is/was white, are you taking any medications?
Antacids?
 
Astra is correct, you do not get white stool from IBS. This is your
most unusual symptom. IBS does not cause blood in the stool
either, unless it truly is from an anal fissure or hemmoirhoid.

With fissures, you typically only see bright red blood on toilet
paper but occassionally see it on the edges of the stool or
a slight amount in the water. You mentioned you saw a lot of
blood once, not sure if a lot of blood is typically seen with
hemmoirhoid.

A lot of people with IBS do in fact have daily diarrhea and/or
constipation with abdominal pain that can be severe, so bad
many of them can not go to work.

However, the white stool and waking up in the middle of the night
is a sign it is not IBS but potentially something else.

I think capsule endoscopy is a great diagnostic tool to do next.
Hopefully they can do it with you soon. It is safe, a good to detect
Crohns in small bowel.

One concern is capsule retention if you have stricturing or narrowing
of your colon. This occurs in people with Crohns. About 1 to 4% of people
with suspected or diagnosed Crohns will have the capsule get stuck in
one of these strictures. This almost always leads to emergency surgery
although some people opt to live with the capsule (it usually passes
out within a year or two.)

Given Imaging, the company that invented this, has now made a patency
capsule for people with suspected or diagnosed Crohns. This capsule
can't get stuck.

One way to see if there is stricturing is to have MR-enterography (MRI)
or small bowel series (also called small bowel follow through, which is
a type of X-ray. The MRI is safer as it does not expose you to radiation
risk.

In the U.S., some refuse to do capsule test without assessing if there
is stricturing and some just do it without it.
 
Hi Gail,

Thank you very much for your reply, much appreciated as always.

I did think about seeing my GP again, the earliest appointment I could get with him was this coming Friday, so in five days time (!)

The white stools, it is strange. It seems to happen a BM or two after I have the really bad pain, like something blocked the bile duct from functioning correctly and it couldn't digest that food properly. Then it goes back to a normal colour, then the pain comes on really bad sporadically again and the white stools return again a day or two later. So it will be interesting to see if they go like it again now because I had the pain a lot last night again.

I'm not taking any antacid's.

I've read everywhere on the net that white/pale stools is not normal and is serious but my GP was very blase about it when I told him. I'd even taken a photograph of it (eww lol) but he didn't even want to see the photo which I found strange. The retired GP my aunty spoke to said that taking a photo was good and that he was very surprised my GP didn't even want to see it.
 
Hi sadhatter

I've been following your story and looked back over the posts and can't believe you're still suffering! I assume you're in the UK? This makes my blood boil! When my consultant was away on paternity leave, I saw one of his colleagues, so to say there's no else to do the pill cam is bollocks!
When I looked over previous posts, one that sticks out, is Dings, she suggested going private? This is what I would do, and then tell them you can't pay.
Also, altho an IBD is suspected, it's looking more like a gall bladder thang!
my friend had this, she had the same symptoms, and her gall bladder eventually burst, she was told she had IBS too! Don't want to frighten you, but your white BMs are steering towards that, and Journey seems to suspect it too.
First thing in the morning, phone the gastros secretary and if she's a Crohnie, she MUST understand, for gods sake! Tell her your in agony, scream if you have to, but keep pushing for someone to listen to you. You've exhausted so many avenues so far, but there is defo something not quite right, hope you're gonna be ok. let us know
xxx
 
Hey Joan,

Yeah, I'm in Hertfordshire in the UK. My pain is generally around my belly button but its too deep to pinpoint exactly where it is... I can feel it now a bit, its never far away, just sometimes much worse than others. I've seen white stools can be from gall bladder/pancreas and small intestine problems... small intestine and pancreas seem likely to be where my pain is... but my gall bladder looked fine and healthy on the ultra sound that I had done...

I'm getting so desperate, I've been like this for weeks and weeks, not sure how much longer I can deal with it...
 
Hello there, I don't have much trust the doc as they got it wrong with me for over 10 years I have CD and UC it is very hard to live with the pain but after a while you get use to it. You could even try another doc or gastro doc instead. My story sounds much the same as yours with the really bad pains and hospital visits and no one could tell me what was wrong even though I have 3 members of my family with diviativerlitis so you think they would of checked it out. I was diagnosied in 2008 when I went to hospital after passing out and loosing over 4kg in 2 weeks was in the loo upto 20 times a day and servere pain. I am still on pills but am doing much better now Thank God. (Sorry for all the spelling mistakes)

Keep your chin up

Good luck

Michelle
 
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Hey everyone, for the first time in weeks I've been feeling a lot better the past 3 or 4 days, no abdominal pain and little nausea, its amazing!!!! :)

Does this mean it might not be crohn's I have or am I getting ahead of myself?
 
I started out with pains around my belly button too. I got bloat and pain and then it started to get more local to the right lower quadrant. I just got out of a 4 day flare, and I have had them on and off for years.
YOU may not have Crohns, but I will wait until you see you Gi in May and see what happens. Think positive, God knows you dont want Crohn's but just in case, watch your diet.
 
Hey, yep, feeling pretty rubbish today, especially nausea.... I saw my GP this morning, he thinks the fact I am having white stools and this abdominal pain it may be a blockage in my digestive tract for whatever reason (crystals or strictures) and its blocking my bile duct. He doesn't think it is gallstones since my ultra sound showed my gall bladder was fine and he said I'm not really the right age or the right sex for gallstones, it generally affects females.

He wants me to have an ERCP to look at my pancreas and liver. He also didn't seem very impressed that my GI hasn't given me any further tests since my colonoscopy. He's writing to my GI today to request the ERCP. Its basically a camera they put down your throat but instead of looking at your stomach, its to see your pancreas and liver.

He also said he wouldn't still rule out crohn's. He seemed surprised I'd been back at work for the past two weeks, he was going to sign me off again today and I said, "No, no I'm just heading to work, been back two weeks", he looked very surprised! Can't believe I have managed to get through the past two weeks at work to be honest, pretty proud of myself. Has only been reduced hours though, 9 till 2, my boss asked me to try full hours next week 9 till 5.30 to see how I get on. Gonna be tiring! If I'm ill though, no chance I can do it. If I feel OK, happy to give it a go, no reason not to.

I just can't believe my GI has done NOTHING since my colonoscopy. That was nearly 4 weeks ago now and I was supposed to have had a capsule endoscopy, a pancreas test and an MRI scan done before my consultation on May 11th and I've had NOTHING! He hasn't even written to the other consultant who is doing my capsule endoscopy to tell him I need it done! Ridiculous!

Whyyyyyyyyy has it come back today, why!!!!! Not done anything differently today than the past 4 or 5 days when I felt a lot better.

You mentioned to watch my diet, what should I avoid? I can't face this getting bad again, would avoid anything that's potentially 'dodgy' to avoid feeling nauseous and abdominal pain!

Thanks so much again for all of your support, help and advice everyone.
 
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Hey everyone, well I had an awful Bank Holiday weekend, feeling really nauseous and my abdominal pain and feel terrible today again and had bad pain again this morning so was unable to go to work. Luckily my boss was very good about it, so I've spent the whole day asleep in bed. I hardly slept last night for feeling so poorly AGAIN :(

I've somehow managed to get through the past 2 weeks back at work and even felt a bit better for a few days last week, but alas here we go again..... :(

For some reason today my muscles all ache in my arms, in my groins, calves, it is really really weird, not had it before and not even sure if it is related, seems strange.

So fed up!
 
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Hi Sadhatter, I know how you feel, I hate it when you start to feel good and then boom, it comes baaaaaaaaack. No rhyme or reason and it why Crohn's is so hard to diagnose. In reference to your diet, just avoid dairy, wheat and chewy meat. Avoid red meat as much as possible, just til you get out of a flare. Low residue diets help. I have alot of respect for those who work whilst having this dreaded disease. Hope you get some answers and soon. I know the frustrations and pain that goes along with this. Took me a long time for a dx. You have to get a dx soon so that you can get something to help you out of the pain. Hugs.
 
Hey everyone,

Well after three months of waiting, I finally yesterday had my appointment at the hospital for my consultation with my GI. He said he was surprised because all of my blood tests came out normal and there were no raised inflammatory markers in my blood tests.

I asked if he thought it could be crohn's still in my small intestine and he said that he wasn't sure and thought probably not because my blood tests would have shown signs of inflammation. I then told him that I'd read on this forum that so many people who had been diagnosed with crohn's eventually had no abnormalities in their blood tests and he just said he "cannot speculate on other people's cases".

He said if he asked for a capsule (pill) endoscopy to be done the specialist who does them would reject it and wouldn't let me have it on the basis that my blood tests showed no inflammation. I said "well something is clearly wrong" and he said, "what do you think of IBS?". At this point I said, "I do not believe IBS would wake me up at 3.30am in absolute agony, the pain so bad it even came into my dream, and causes me to go to A&E in the early hours of the morning. I also don't think IBS would give me pale/white stools on five occasions and also occasional bleeding. I'd be amazed if the pain and constant nausea I have been having at times is IBS, it has been excruciating pain." He then nodded and said, "I agree".

I then asked if he thought it could be gallstones that are passing into my digestive tract and possibly blocking my bile duct (hence the white stools) and he said he didn't think so as I am the wrong age and sex for gallstones. He said it could be pancreatitis and he also wants to test for porphyria (can't imagine it would be either of those, but I'm no doctor?). I asked if I had pancreatitis wouldn't I be in agony all of the time and he said no, you would if you had chronic pancreatitis, but pancreatitis can give you intermittent abdominal pain and nausea.

He thought about it and then said... OK, I am going to get an MRCP done which is where you'll go through a scan machine, it is a bit claustrophobic and noisy, but it will look at your liver and pancreas because the sporadic white stools could be an indication of a problem there, although again your liver and pancreas blood tests have been normal. If that doesn't show anything, we'll do a pill endoscopy. He said if that still doesn't show anything, we could potentially do a cat scan, but as I'm only 27 he doesn't really want to do that because it can potentially cause lymphoma.

He said that I am a very strange case and they basically have no idea what is wrong with me. My mum and I still think its crohn's in my small intestine and to date I have still not had anyone look at my small intestine, have just had an ultra sound and a colonoscopy which were normal.

So at least they're going to be doing some tests, just hope they happen quickly. He also wants me to go to my GP or my hospital and get blood tests done immediately if I have a bad day again with the abdominal pain, although I'm not sure what good that would do since they took my blood when I ended up in A&E in agony and the blood tests were all normal.

I'm just miffed by the whole thing now. I suspect they think IBS and maybe think I am just making a song and dance about it, but I genuinely don't believe IBS would be as bad as this, I always thought it was more of a nuisance for people than something that makes you feel as seriously ill as I have been.

He seems to be placing all his faith in these blood tests and very nearly ruling out crohn's (or certainly not suspecting it anymore) just on the basis of normal blood tests. I've seen so many on here though who had normal blood tests and have since been diagnosed with crohn's...
 
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Aw poor you

I really hope they don't fob you off with IBS too, Your doc seems to think not?
Have you asked for a sigmoidoscopy? That is how they found mine. This is completely different from a colonoscopy, in that the scope only goes up to the sigmoid, the last bit of the colon, whereas the colonoscopy does the whole large bowel.
with regards to the small bowel, have they tried a small bowel follow through with X-Ray? or an endoscopy, which is thro the mouth with a camera? Or a CAT scan? Don't be afraid to ask for these to be considered, insist on it, it's your NHS!!

wishing you good luck, you've been thro so much, and it's time you had an answer and some meds, cant believe they haven't given you any yet!
Oh, don't worry about making a song & dance of it, that's the only way these people will listen, if you don't and walk away, they won't be arsed!
Sorry for being so cynical!!
xxx
 
Oh Sadhatter,
I really feel for you. I know how it feels to wait months to see the consultant and then still walk away feeling no further forward. I think it's a disgrace not doing the pill cam because your bloods are ok. I had loads of blood tests and they were normal for inflammation yet I was so thin. I think the normal bloods were one of the reasons why it took so long to diagnose me. They seem to place a lot on this.
I agree with Joan - insist on more tests quickly. I kept ringing my consultant's secretary and it did speed things up a bit. Pester power!
Hope you have some more good days soon,
Gail
 
Hey,

I just wondered... what is a small bowel follow through? Is this a test that can only be done in the States or do we also have it here in the UK?

I'd been feeling a bit better this week but have had a bad tummy today and had blood this morning when passing stools :( Maybe it was from a haemorrhoid or something, don't know, but it was bright red blood and all in the water :(

I also had a really sore throat Friday and Saturday, could be totally and utterly unrelated and just a cold but at the moment I'm always wondering if anything is related, don't know if sore throats can be anything to do with crohn's. It's gone now though :)
 
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Hiya
sorry you're still rough, and yes maybe the sore throat is from Crohns, your resistence is low, and immune system lowered, so yeah you can pick up all sorts of lurgies!
And, I have to say, you DO NOT bleed from your bum with IBS!!
A small bowel follow thro is where you drink some opaque contrast which shows up your small bowel on an X-ray, and yup it's available here, I had one too.
Get your mum to scream and shout at these idiots, and demand some tests before you hit the deck in A&E, milk it if you have to!! tell em your dying!
good luck
xx
 

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