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06-19-2010, 06:07 AM   #1
entourage
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Do I have Crohns, Help diagnose me??

Hi All,

I am looking for some advice from members who have crohns, Can you please help diagnose me, and let me know if my symptoms are most likely crohns.
here goes:

I am male, age 25, I have no previous medical history having never been in hospital for anything, no problems, fully healthy.

Just over 12 months ago, I started to lose weight, I was around 14 stone.
I am now down to 9 stone. during these 12 months I was going through the most challanging time in my career, and went through 3 different sets of redundancies @ work, luckily I kept my job, but the work load over this period was intense and stressfull due to lack of staff, I was constantley stressed out and could not relax, i was constantley thinking about work, I was having trouble sleeping, and even thinking about work in my sleep.

the weight loss has come gradually over 12 months, I put the weight loss down to stress at work, because I am a natuaral worrier, and in the past have not eaten well when I was under stress.

During this time my appitite went completley, I was never hungry, I would skip breakfast, not have time for lunch, then I would be so stressed later on that I didnt feel like tea, I was basically just coming home and going to bed.

Around 3 months in I started to get this pain in my stomach, it was a burning sensastion, that would come and go, and would wake me up at night.

I was never hungry and the sight and smell of certain foods made me feel sick.When I did eat food the pain in my stomach would start almost immediatley, I then started to need a bowel movment straight away after eating, I then ended up going the toilet sometimes 7 times a day, and it was always diareah
I was extremely tired and run down during this period with no energy.
I develpoed a hemmeroid about 12 months ago, this causes a bit of bright red blood, but this has now gone, and has not happended since.
looking back I now realise that I didnt pass much wind during these 12 months, I can hardly remember doing so, this became more clear when I started the medication I started passing lots of wind, and generally I pass a normal amount of wind everyday now, was this because I was blocked?

I ignored the stoamch pain for several months, until It started to get worse, I then ended up getting nausea after eating meals, and had a full feeling in my stomach, I ended up vomiting, this was involuntary and could not be helped, it was caused by the nausea, i always felt 100% better after vomiting becasue I didnt have the full feeling.
The vomiting started off being every now and again, but then ended up being nearly every day after food, I was getting acid, and nausea.
This is when I went to the Doctors because I thought it may be something serious.

They refered me to a gastro guy, they did the endoscopsy with revelaed a small hiatus hernia.
They could not get the scope through the pyloric valve, the doctor suspected this was because of a pyloric spasm.

I had a repeat endoscopy and the doctor could not get the scope through the pyloric valve again, he now suspected that I had pyloric stenosis secondary to peptic ulcer disease in my duodenum - although they could not get the scope in to diagnose 100% both doctors said they were confident it was pyloric stenosis secondary to peptic ulcer disease.

I was then sent for blood tests, this revealed the following

my CRP level was high @ 100mg/L - think this is imflamation in blood
my folate was slightly low
my platelet count was raised @ >500x10^9/L

the doctor noted that I was definatley managing to keep fluids down.

I was then sent for a barium meal, this revealed a distorted pylorus which was narrowed, it also revelaed a deformed duodenal cap with central ulcer crater, there was also a significant stricture of the distal pyloric canal, but it was mentioned that a mass lesion could not be excluded.

I then had ultrasound, this revealed nothing, all my organs were 100% with no problems.

I was put on nexium 40mg a day to heal the suspected ulcer, the start of the medication coincided with stress easing in my job, almost at the same time, I was told my job was safe, and the work load eased - the change in my was unbelieveable, although I am unsure how much was down to the stress going or the nexium medication.

on the 1st day of medication I fely 100 times better, the nausea and acid went away straight away and the stomach pain I was having daily went immediatley and I have not had it since. I did not vomit for the first 4 weeks on nexium and generally felt good with my energy levels and everything feeling 100%

After 4 weeks on the medication my appitite came back in a big way, I was hungry all the time, I started trying to eat everything, this then lead to vomiting again, but it was a totally different feeling to the previous vomiting, the previous vomiting was involuntary and i could not stop it due to the nausea. This time was different, I had no nausea, but had a very full feeling in my stomach, I therefore MADE myself sick, to ease the feeling. Straight away after making myself sick I felt 100%, but was always hungry again straight away and started eating again.
when i eat too much my stomach sort of sucks itself in, and only comes back out once I get rid of the food.

Since starting the nexium, my bowel movements have gone completely normal.
no more diareah ever, i have a normal solid healthy bowel movement once a day no problems, previously I was on the toilet 7 times a day.

I was then sent for a CT scan, this has reveled "some changes" in my large bowel, not sure what changes they are refering to because they have never looked their before.
anyway the doctor mentioned imflamation in my large bowel and said he is almost sure I have Crohns disease or Ulceritive colities

They are now sending me for a colonopsy to check for imflamation I think.
I have this next week.

Has anyone got any advise on the above based on their experiences?
can anyone answer the following questions:

1. on a scale of 1 to 10 - how likely is it that I have Cronhs?

2.what is a normal CRP level, how high is 100mlg? is this significant marker for imflamation in Crohns?

3. how reliable are CT scans @ revealing bowel imflamtion? does the fact that the CT scan showed imflamation basically mean I have crohns?

4. is it possible for the colonopsy to come back showing no imflamation even when the CT scan has seen imflamation? or is this rare?

5. are there any other causes/ natural causes of bowel imflamtion, or does it almost always mean crohns of some type when it shows up on a test???

6. how long do flare ups last generally? I find it hard to think I had a flare up for 12 months whilst feeling ill, but the flare up went the day i started nexium?


I am gernerally feeling back to my old self now, with no problems. Although I have been upset with the lack on info or answers from the doctors, they basically always rush me through for 2 mins when they see me and dont tell me much. I had my first camera in January 2010 and we are now in June.

Has anyone got any advice on the above, or can you recommend questions i should be asking my doctors, or tests you think i should be having?

Can anyone tell me what foods I should be eating, or certain lifestlye changes I should make.
I have recentley been getting cold hands when all my body is fine and warm is this significant? or down to a low immune system?
I am not anemic

Anyone any idea what is wrong with me based on the above??????????????????



please help

thank you

Last edited by entourage; 06-19-2010 at 06:27 AM.
06-19-2010, 07:18 AM   #2
Astra
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Hi entourage
and welcome

wow, so many questions! I'll try my best!
does sound like an IBD to me, but what? I don't know! UC or Crohns?
I was told a normal CRP would be around 5, so yes yours is high, mine was 261 was I had a massive flare back in Jan
I'm sorry, I've not had a CT scan, lots on here have, they'll advise
Yes, sometimes scopes come back 'normal' cos inflammation has reduced, doesn't mean to say it's not there tho!
Remission is a huge area, this can last for years, mine did, then come back and bite you on the arse when you're not expecting it, so maybe you're back to remission whilst on appropriate meds?
I agree about being rushed thro, I have learned so much off this forum, more experienced and knowledgeable peeps here than the actual gastros,only another Crohnie understands, get yourself genned up, read the other threads on treatment and diet, that's a good start.
As regards to diet, this is a process of elimination, start a food diary, and record foods that irritate you, then exclude them, and reintroduce them at a later date! If you're flaring, the low residue diet is a good start, you can find this on the forum.
I understand your anxiety and fear, so many questions, no answers, there is lots of support here for you, you're no longer alone with this, and in time you will be able to manage it, not control it, as such, but manage, fire away with questions, there is always someone here.
lotsa luv
Joan xxx
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06-19-2010, 07:39 AM   #3
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Hello Entourage, welcome to the forum. There are plenty here going thru the same problems and still no diagnosis. It sounds like a stricture somewhere, and I too have a Hiatus hernia and on Nexium when it stirs up. Whether you have crohns or a hiatus hernia, it is best to eat smaller meals throughout the day, a heavy meal or one meal a day will put stress on it. As Astra says being on a low residue diet is a good idea. If you are too busy to eat, then drink nutritional drinks, and get lots of Calcium and Vitamin D3, Nexium robs your body of it.

Crohns and UC is very hard to diagnose, some take years, some are found right away. UC usually bleeds from the rectum. Ct scans do help the diagnosis, ultrasounds are very unreliable. I dont know my marker numbers, never did,they would say it was in normal range. Stress by the way really wreaks havoc on the gut. You need to get on some medication to help control your symptoms. When is your next Gi appt, keep us updated, I am curious too. Welcome aboard!
06-19-2010, 08:26 AM   #4
merrywidow
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we cant diagnose you , we are not doctors, or medically trained.
flares can start anytime, but are usally worst when we get stressed.
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06-19-2010, 11:44 AM   #5
Keona
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Hey Entrouge,
I have a book on Crohn's and this is what it says about CT scans:

"CT scans have been proven useful in some cases. A CAT scan can show where the bowel is thick and, sometimes, where it is narrow. The main value of a CAT scan in IBD is that it shows the presence and location of the abscesses that occur as a complication of Crohn's disease."
I'm not a doctor but I think there are other reasons why you could have inflammation such as h.pylori or other bacterias. I think the doctor takes all of your symptoms into account and then starts to look for signs to exclude certain problems or to confirm problems. I know it is frustrating not having the answers, especially since you have already disclosed that you are a worrier. This forum has helped me through my tests that have taken over a year and 1/2. I think there are a lot of people with gastro problems and since they are usually chronic, the patient load just keeps increasing. It is really difficut to be in limbo especially when you're sick.
I also have a hiatus hernia and gastritis (which is essentially inflammation of the stomach). What I was told was to raise my bed up with bricks so you are on an angle. You can google this to see what I mean. I use to have to sleep sitting up to reduce the amount of back flow. When you have a hiatus hernia, it keeps the esophageal sphincter open somewhat to allow acid to creep up. Raising the head of your bed works against gravity making it more difficult. The full feeling you describe is terrible - very painful! I also stay away from anything acidic like orange juice, peppermint, coffee, tomatoes, etc. Look up the GERD diet and it will give you a whole list of foods to avoid. You may not have to be on the diet forever, just enough to heal the inflammation and to heal. The acid can do a lot of damage if not attended to.

As for the ultrasound, this is what my book says:

"Within the past 15 years, it has become possible to use sound waves to examine the bowel. Although this does not allow a specific diagnosis to be made, it can sometimes show a thickened bowel when someone is too ill to undergo routine diagnostic testing. Thickened bowel has several causes, but one of the more common ones is Crohn's disease. Ultrasound can also be used to dianose certain complications of IBD, especially abscesses within the abdomin."

Ultrasound is also a much cheaper test and is readily available where MRI's for example you are put on a waiting list, at least you are here in Canada.

"Which is better ultrasound or CT scan?
Ultrasound is believed to be perfectly safe. A CAT scan involves radiation. Generally speaking, ultrasound works better in thin people and CAT scans work better in overweight people. Fat has a distinctive appearance on a CAT scan and can outline various organs and strictures. Gas in the bowel can greatly interfere with the transmission of sound waves, so if a patient has a bowel obstruction, or some other reason for having a lot of gas in the bowel, a CAT scan will be better."
Saibil, F. (2002) Crohn's Disease & Ulcerative Colitis

That's all I have Entourage. Try not to worry as this can make things worse.
This forum has helped me a great deal - hope you will read through some of the posts and gain from everyones knowledge Let us know how you are!
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06-19-2010, 11:48 AM   #6
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Great info Keona!!!
06-19-2010, 02:26 PM   #7
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I had both the ultrasound and CT scans done. As I am a young woman and they had no idea what they were looking for, they ultrasounded all my organs first. Then when the ultrasound showed everything was normal except slight findings in the small bowel, they did a CT of my small bowel. That way they kept the radiation to a minimum, but the ultrasound was not clear enough to make a diagnosis.

After the CT they diagnosed me with inflammation of the small intestines, with Crohn's being the most likely cause. However, they needed to take biopsies (during a colonoscopy) to 100% say if it was Crohn's.

As for the scope, the inflammation was still there (after 4weeks of steroid treatment). My gut feeling is that the prep reinflamed the area, as I felt as bad during the prep as when I was admitted to hospital originally. The scope also picked up areas of previous inflammation (that I never knew I had!) so I would guess that it is rare for a scope to come back completely clear soon after a CT has picked up inflammation.

Hope that helps!
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06-19-2010, 03:51 PM   #8
entourage
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Hi All

Many thanks for the great info, much apprecaited, I feel a lot better knowing other people are having the same issues.
I will be visiting here more

I will let you know how i get on. Appolagises for the amount of questions lol



Can i ask, did many fo you have stomach/bowel related problems all your life of for many years before you were diagnosed with Crohns?
I ask this because I have never had any problems prior to these las 12 months.

I have done some reading on the internet, and it seems quite conclusive that if you have imflmaation in the bowel, its nearly always Crohns or colities, there doesnt seem to be much else, so I am almost certain i have it
Do you know of any other reasons for imflamation in the bowel?

Also does anyone know if it affects your ability to get a mortgage.
06-19-2010, 04:10 PM   #9
Rebecca85
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I have had minor symptoms all my life, but then I am lactose intolerant and cheat occasionally, so I don't know if it was lactose or Crohn's. As for getting a mortgage, I am in the Uk and I don't think it would affect you getting the mortgage, though you may find restrictions e.g. Making it a condition that you have to get life insurance or they may omly lend you 90% of the houses value.
06-19-2010, 05:04 PM   #10
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These diseases are just like the other autoimmune diseases. Some people have symptoms for a long time before they get sick enough to be diagnosed. Some people are healthy till they get run over by the truck. Neither way is easy!

Try to be patient. You should some answers soon enough. If they find lesions in your colon, then they will know what you have by the types of cells there.
06-19-2010, 05:28 PM   #11
Keona
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Hey Entrouge,
You are doing what I did. Even though knowledge is a good thing I immersed myself in it and after awhile it drove me nuts because I STILL didnt know the answer... only a doctor can diagnose you. I did exactly the same thing though. I mentioned in my first post that there are bacterias that can cause inflammation (along your entire Gastro- intestinal tract). A biopsy can rule these out - if not treated, it can cause Small bowel bacterial overgrowth (SBBOS) or Small intestinal bacterial overgrowth (SIBO). Another reason is a disease called diverticulitis along with IBS. All of these share some similar symptoms...but your doctor needs to do the tests to find the signs. This is why it takes so long to diagnose in some cases.

Last edited by Keona; 06-19-2010 at 05:33 PM.
06-19-2010, 06:17 PM   #12
Astra
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re: getting a mortgage, I got one back in December but was quoted about 26 for life insurance, when I filled the medical forms in and had to declare the Crohns, this has now shot up to 45 per month!
06-20-2010, 01:01 AM   #13
Rebecca85
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Yes, I am lucky in that I took out separate life insurance a few years back, As far as I can tell I don't have to declare the Crohn's as I didn't have symptoms when I bought it. Since it's separate I can keep the same life insurance even if I change mortgage. Now if only I had planned ahead with the travel insurance!
06-20-2010, 06:56 AM   #14
CodeBrown
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It often takes a long time to diagnose intestinal problems due to the tests required to determine your illness. There is a pretty definitive way to diagnose Crohn's, which is biopsy, but as you can imagine this is an invasive procedure. In the states, the docs try to go with the least invasive procedure first. When I had my CT scan it showed narrowing in the terminal ileum. The docs said it could be Crohns or it could be some sort of virus/infection. Of course it turned out to be Crohns. Your symptoms certainly can be attributed to pyloric value stenosis...stenosis or narrowing in any area of the abdomen will cause the types of symptoms you described. My advise is to relax and let the docs do their thing. If you have Crohns, then it's good they caught it now and you can go ahead and begin treatment. Hang in there...I'm a chronic worrier too...but I've learned it tends to make things worse. Try to relax and know that if this is Crohns...this is a great place for support and info.
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06-21-2010, 05:48 PM   #15
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Hi Entourage,

On balance, I think your symtpoms are more likely caused by chronic peptic ulcer disease, and now you probably have a fibrosed pylorus causing your post-meal vomiting. Ask your doctor for a barium meal or repeat endoscopy.

A normal CRP is less than 5, however, an ulcer large enough to deform your pylorus would be enough to raise your CRP to that level. It would be interesting to see what your CRP is now that you have been treated with nexium. By the way, it would be worth excluding Helicobacter pylori (a bactera that can cause ulcers) which is easily treated.

CT scans these days are very good at picking up inflammed bowel. However, it's hard to say from the information given. If they only saw a small area of large bowel thickening, this could be as simple as a contraction going through the bowel. However, if there were other signs (ie. stranding, oedema), then you could be more convinced that it represents inflammation.

The colonoscopy is a better test for inflammation than the CT, as you can also take biopsies. Also, the appearance of the inflammed lining can be diagnostic. If you had a normal colonoscopy, I think the chances of you having Crohn's disease would be remote, although you wouldn't have excluded small bowel Crohn's which would need an alternate type of investigation.

There are quite a few causes of inflammed colon, namely infection, ischaemia (not enough blood supply - although wouldn't fit your age group), IBD (Crohn's or UC), diverticular disease, etc.

I wouldn't worry about how long flare ups last until you are formally diagnosed, although on what you have written, I think it is less likely you have IBD.

Hope that is helpful.
07-03-2010, 08:39 AM   #16
entourage
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Hi All

Many thanks for the great info, sorry for the delay I have been on holiday.

Aussie, thank you for your very in depth response, your comments are the very things I have been wondering, basically trying to self diagnose, which I know is not good.


I have had an endoscopy which revealed a deformed pylorus, they couldn't get the camera through.the doc said the most likely cause was pyloric stenosis secondary to peptic ulcer disease.
I then had the barium meal follow through which revealed a a significant stricture in the pyloric canal, and also a ulcer crater in the duodenal bulb, the duodenal bulb was also deformed I think

like you say I would like to now have another blood test, because I had it done months ago before I started nexium, since being on the nexium I have not had stomach pain once, so i think it has healed the ulcer - and maybe my c-reactive protein levels have dropped. last time they were 106ml

would h-pylori not have been picked up on my first blood test?

Aussie - regarding bowel imflamation, what is a contraction going through the bowel that you mention?

I have just had a letter from my GI, it says the CT scan picked up Right Colonic imflamation, suggesting this could be crohns or ulcertive colitis.

I have a colonospy next week, so hopefully with know more then

I have done a bit of internet research and it seems right colonic imflamation is more consistant with ulcerative colitis, do you think this is true?

anyone got any advice on the above, and the likleyhood of which disease out of the two it is, if you scroll down, you can read all my previous symptoms.

Thank you
07-03-2010, 02:00 PM   #17
Keona
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there is a blood test for H.pylori however it isn't very accurate. You can have a false neg. A Biopsy and /or stool sample are more accurate. I think even a breath test is more accurate than blood work.

You can get spasms in your bowel that may look like narrowing. They may repeat these tests or do additional to make sure.

I liked the advice someone gave you awhile ago.. try to relax and let the doctors do their thing. Only they can diagnose you IBD and worrying do not mix well.
07-03-2010, 03:28 PM   #18
Aussie
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Hi Entourage,

They would've picked up h pylori on a blood test if they looked for it. You can either request a blood test or stool test, the best would've been a biopsy at your endoscopy, which I'm sure they would've done - or if not, it wouldn't be unreasonable to just get empirically treated for H pylori.

As to the contraction, if you could imagine a contraction wave running through your bowel, pushing the contents forward, a picture at that point would show an area of narrowing of the lumen of the bowel at that point, with sometimes some bowel wall thickening - although this should be very easy for a radiologist to differentiate from significant pathology.

As to right colonic inflammation, this would be very unusual for ulcerative colitis, which is usually continuous inflammation from the rectum which extends for a variable distance proximally. Best to wait for the colonoscopy, should hopefully give you a definitive answer.
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