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01-12-2014, 05:46 AM   #1
Banshee
 
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Could it be Chron´s that I got?

Hi,

I started to get problem with my stomach for about 5 years ago. In the beginning it was light pain in stomach(under belly button) that lasted about 1 month at a time with a interval of every secon month. After about a year I began to get more severe problems like these :
  • Diarrhea from time to time and some times blood (The blood was proved to be from cracks in rectum that after some years healed). For the most part its normal and I only go on the toilet about 1 time a day.
  • Dizzy
  • Pain under the belly button and at the turn of the large colon under left rib
  • Back pain from time to time

After a year it got worse (same as above but also) :
  • Neck problems that ofte results in headaceh
  • More server pain under bellybutton
  • Constant pain in stomach but in diffrent severity
  • More pain from the middle of the stomach
  • Extrem pain at the appendicitis area that forced me to the ER about once a month. Thay have however never found anything more then extremly senstitive area around the appendicitis. These extreme pain came first after I tried alot of diffrent medicnins(see below)
  • Constant pain under bellybutton
  • Nerve pain in hip and down to fibula from time to time
  • Pain in one joined in finger (list it as join pain is common in Chohn)
  • Nausea

This is the examinations that I have gotten so far :
  • 2 Colonoscopy (including tissue samples)
  • 1 Gastroscopy (including tissue samples)
  • 2 Ultrasound
  • 2 CT Scan
  • Alot of blood tests
  • 4 Feces culture
  • 2 Feces blood check

None of them have shown any deviations. Some of these tests was done a couple of years ago while some are done within a year ago. Oh yes, the last ultrasound showed a fatty liver but it was miner and according to my doctor this might be a miss reading.

Thay have also done MRI of neck and hip, all that was found was a small change in low back but that was nothing that could be operated.

I have tested alot of diffrent medicin, for example :
  • Inolaxol(still uses this from time to time against dirrhea
  • antidepressive > Venlafaxin, Sertralin, Saroten/Tryptizol, Cymbalta, Diklofenak
  • Asacol
  • Egazil
  • Omepraxol
  • Primperan
  • Papaverin
  • Flagyl
  • Rifaximin

Diklofenak is the only medicin that made any diffrence but according to the doctor this is due to that this medicin is a painkiller. When ending the Diklofenak the pain was back again.

Primperan did help agains nausea.

Saroten/Tyrptizol at low dose (20 mg a day) seems to help with the constant pain under belly button.

I have tried alot of diffrent diets, avoid milk and gluten but nothing have made any change. I have tried excluding alot of diffrent food.

My father has ulcerative colitis or chron´s (doctors do not really knows, have not found anything besides in the large colon). He developed cancer in his large colon right at the appendicitis so thay hade now removed the entire large colon. I say this becous its a risk that I have inherited this disease. None of us smoke.

I have so much pain in my stomach that I often have to sit at home and do nothing.

My gastro doctor have granted a pill camera check but when that is done he will probably discharge me becouse he thinks that there is nothing more to do.

When reading about Crohn´s it does sound much like the problems I got but none of the examinations so far have been able to find it even when I have so much pain.
01-12-2014, 09:14 PM   #2
SarahBear
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Welcome to the forum!

Yes, it does sound as if your symptoms could indicate Crohn's. The types of abdominal pain you've described are very similar to the pain I experience from Crohn's. However, I'm sure there are other possibilities as well. Your father having IBD does increase your chances of having it, as well.

When are you having the pill cam? I went through numerous tests that all came back clear. The pill cam was the last test for me, and it showed inflammation and ulceration throughout my entire small intestine. Since your pain seems to be somewhat similar to what I experience, I wouldn't be surprised if your problems are coming from your small intestine as well.

I hope things get better for you soon! Please keep us updated on what you find out.
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01-13-2014, 02:21 AM   #3
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Thanks,

Did you have the same examinations as I did without any findings? Did you have the same symtoms? No fever, no blood and so on?

How are your symtoms today?

I thought that Asacol should have made my symtoms better if it was Crohn´s? But it did not.

Im 34 years old.
01-13-2014, 10:51 AM   #4
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In most cases of Crohn's or UC, the tests you have had would have shown something. They would also usually cause more severe diarrhoea and/or bleeding. Other symptoms that doctors would look for are fevers (raised body temperature) and unintentional weight loss.

So although there are atypical cases of Crohn's which would have symptoms such as you describe and which get missed on some tests, I think it's unlikely that you will be diagnosed with Crohn's by a pill cam, though of course it's a possibility, and you're correct that having a relative with IBD makes it more likely that you'll have it too. How was your father diagnosed?

I know it is extremely depressing when you can not find a cause for your pain. When you were going through tests, were your doctors looking specifically for Crohn's or were they just testing without a diagnosis in mind? If you've only been seeing gastroenterologists, it might be worth seeing if a doctor from another field can suggest alternative possibilities. For example, seeing a neurologist about your nerve pain may result in suggestions of diagnosis and treatment that wouldn't necessarily occur to a gastroenterologist.

Btw are you male?
01-13-2014, 12:05 PM   #5
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In most cases of Crohn's or UC, the tests you have had would have shown something. They would also usually cause more severe diarrhoea and/or bleeding. Other symptoms that doctors would look for are fevers (raised body temperature) and unintentional weight loss.
Yes I agree but the only time they seen anything is the second time I was on the ER for extreme pain at the appendicitis. At this time they read a small increase in infection rate and almost fever (about 37,8), but the day after it was normal again.

Every time I get these extreme pains I also get vary lose diarrhoea. But I do not have to run to the toilet more then a couple times.

So although there are atypical cases of Crohn's which would have symptoms such as you describe and which get missed on some tests, I think it's unlikely that you will be diagnosed with Crohn's by a pill cam, though of course it's a possibility, and you're correct that having a relative with IBD makes it more likely that you'll have it too. How was your father diagnosed?
I thinkt that he hade blood work that indicated on infection and at coloskopy thay found infection in large intensitet. He had also bloody stools. It is however not clear if he had Chron´s or Ulcerös kolit. One time thay said Chron´s and another Ulcerös kolit. Thay did however not find any infection in the small intensitet.

I know it is extremely depressing when you can not find a cause for your pain. When you were going through tests, were your doctors looking specifically for Crohn's or were they just testing without a diagnosis in mind? If you've only been seeing gastroenterologists, it might be worth seeing if a doctor from another field can suggest alternative possibilities. For example, seeing a neurologist about your nerve pain may result in suggestions of diagnosis and treatment that wouldn't necessarily occur to a gastroenterologist.

Btw are you male?
Doctors always said that they did tests to rule out any dangerous diseases. And thay did know that my father hade IBD.

Thay have however talked much about IBS but when reading on IBS(which I have alot) its clear that I have a more severe version if it really is IBS I got. Then agina, IBS is really more or less any consistent problem with the stomach/intestine that is not IBD.

I was sent to a neurologist in the beginning(about 3-4 years ago) and thay did some simple tests and ruled out any neurologic problem. The doctor was however new and hade to go and consult with another doctor(that never saw me).

Im a 34 years old male with "normal" weight and length.
01-13-2014, 08:20 PM   #6
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So sorry to hear you are having so many issues and are struggling to get a diagnosis!
Have they looked into the IBS route with diet?
I only say this because I have a friend in the same situation. Funny enough her symptoms started the same time as me and we had the same tests initially but whereas I was diagnosed with crohns from my colonoscopy and blood work, they couldn't find anything wrong with her.
Although her symptoms were not as severe as mine she would have occasional diarrhoea and severe pain and yet each colonoscopy she had (3 now I think over a year) came back negative, which was very frustrating for her. Her blood work was fine other than a slightly elevated CRP occasionally.

They have since diagnosed her with bacterial overload in the bowel due to IBS which had caused the diarrhoea and pain she was experiencing.
So recently she has been started on this FODMAP diet which doctors hope will help solve the issue !

I hope this helps and that the pill cam can give you some sort of insight into what is wrong.
01-13-2014, 10:31 PM   #7
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Thanks,

Did you have the same examinations as I did without any findings? Did you have the same symtoms? No fever, no blood and so on?

How are your symtoms today?

I thought that Asacol should have made my symtoms better if it was Crohn´s? But it did not.

Im 34 years old.
I had a colonoscopy, an endoscopy, and an upper GI (barium x-ray). All were clear. My symptoms were primarily pain similar to what you described. The worst pain was just under my belly button, across the width of my stomach, sort of between my hip bones. It was incredibly severe (10/10 on the pain scale), came in waves, and was followed by diarrhea. That is the only time I had diarrhea. I had small amounts of blood, but it only became noticeable when I started paying very close attention. I didn't have any fevers that I was aware of.

I have only mild symptoms now, as I'm in remission. I have fatigue and occasional diarrhea or constipation, and my stomach is still sensitive to raw vegetables (but other foods are okay). I have pain occasionally as well, but nowhere near as severe as what I experienced while flaring.

Hypothetically, Asacol should improve your symptoms… if the medication works for you. Unfortunately, treating IBD is rather hit-or-miss. Some people go through several medications before finding one (or a combination of them) that does the trick.

In most cases of Crohn's or UC, the tests you have had would have shown something. They would also usually cause more severe diarrhoea and/or bleeding. Other symptoms that doctors would look for are fevers (raised body temperature) and unintentional weight loss.

So although there are atypical cases of Crohn's which would have symptoms such as you describe and which get missed on some tests, I think it's unlikely that you will be diagnosed with Crohn's by a pill cam, though of course it's a possibility, and you're correct that having a relative with IBD makes it more likely that you'll have it too. How was your father diagnosed?
I just told OP that this is pretty much exactly what happened to me. It is definitely possible. My entire small intestine was severely inflamed and ulcerated and yet I still had very small amounts of bleeding and only intermittent diarrhea. The amount of weight loss I experienced would have gone unnoticed in an average-sized individual. Yes, there are other possibilities, but all things considered, I see no reason to say it is unlikely.
01-14-2014, 03:45 AM   #8
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So sorry to hear you are having so many issues and are struggling to get a diagnosis!
Have they looked into the IBS route with diet?
I only say this because I have a friend in the same situation. Funny enough her symptoms started the same time as me and we had the same tests initially but whereas I was diagnosed with crohns from my colonoscopy and blood work, they couldn't find anything wrong with her.
Although her symptoms were not as severe as mine she would have occasional diarrhoea and severe pain and yet each colonoscopy she had (3 now I think over a year) came back negative, which was very frustrating for her. Her blood work was fine other than a slightly elevated CRP occasionally.

They have since diagnosed her with bacterial overload in the bowel due to IBS which had caused the diarrhoea and pain she was experiencing.
So recently she has been started on this FODMAP diet which doctors hope will help solve the issue !

I hope this helps and that the pill cam can give you some sort of insight into what is wrong.
Yes it is frustrating. For me the Crohn´s sounds like the second worse to get after cancer so I am really hoping that thay could determine for sure that its not Crohn´s that I got.

I have tested alot of diffrent diets and also try to have a food diary but without luck. I have tried FODMAP and LCHF for some time wihout any luck(more then losing wight).

I have read about bacterial overgrowth and have taken some tests for it that did not show any sign of overgrowth. Even if the symtoms sounds "light" comparing to mine, Its still not totally ruled out. The only treatment that seems to work good on bacterial overgrowth is feces transplant but this is a procedure that is done only if you have found signs.

Its also hard to know that even if I do 3 colonoscopy this year that result in nothing, a new colonoscopy next year might find something. Its simple not uncomen that you have to do the same examinations a couple of times before finding anything.

Is ther something else more then Crohn´s that might result in my problems and that a pill cam might finde? Or are we only looking for Crohn´s with this kind of examination?
01-14-2014, 03:53 AM   #9
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I had a colonoscopy, an endoscopy, and an upper GI (barium x-ray). All were clear. My symptoms were primarily pain similar to what you described. The worst pain was just under my belly button, across the width of my stomach, sort of between my hip bones. It was incredibly severe (10/10 on the pain scale), came in waves, and was followed by diarrhea. That is the only time I had diarrhea. I had small amounts of blood, but it only became noticeable when I started paying very close attention. I didn't have any fevers that I was aware of.

I have only mild symptoms now, as I'm in remission. I have fatigue and occasional diarrhea or constipation, and my stomach is still sensitive to raw vegetables (but other foods are okay). I have pain occasionally as well, but nowhere near as severe as what I experienced while flaring.

Hypothetically, Asacol should improve your symptoms… if the medication works for you. Unfortunately, treating IBD is rather hit-or-miss. Some people go through several medications before finding one (or a combination of them) that does the trick.
Did you have the pain under the bellybutton constant? Was it really as high as 10/10?

I got pain in large colon and its not uncommon that it is throws rays out to the back. This pain is for the most part about 3/10.

Then I have the more or less constant pain from the small colon and this is as high as 5/10 at times.

I have my extreme pain from the small colon about 1 / month and that pain is 8/10, its without a doubt the most pain I ever had but i suspekt that it could go a bit higher until I faint.

My stomach is often vary swollen but not vary gassy.

I just told OP that this is pretty much exactly what happened to me. It is definitely possible. My entire small intestine was severely inflamed and ulcerated and yet I still had very small amounts of bleeding and only intermittent diarrhea. The amount of weight loss I experienced would have gone unnoticed in an average-sized individual. Yes, there are other possibilities, but all things considered, I see no reason to say it is unlikely.
If almost the entire small intestine was sverely inflamed, should that not make you vary tired all the time? If the small intestine have been inflamed over a long time, will a pill came show scares of this even if there is no inflames right now?
01-14-2014, 05:29 AM   #10
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I just told OP that this is pretty much exactly what happened to me. It is definitely possible. My entire small intestine was severely inflamed and ulcerated and yet I still had very small amounts of bleeding and only intermittent diarrhea. The amount of weight loss I experienced would have gone unnoticed in an average-sized individual. Yes, there are other possibilities, but all things considered, I see no reason to say it is unlikely.
I didn't say it was impossible - just unlikely, which it is. The more tests you have that don't pick up Crohn's, and the more your symptoms deviate from those typical of Crohn's, the more unlikely it is that you have it.
01-14-2014, 05:48 AM   #11
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Is ther something else more then Crohn´s that might result in my problems and that a pill cam might finde? Or are we only looking for Crohn´s with this kind of examination?
I don't know which specific illnesses a pill cam can detect, but I think it's worth mentioning that Crohn's and UC are two of the most common gastrointestinal problems. Along with IBS, bowel cancer and a few other things, those are the ones that will come up when you search the Internet for your symptoms, and those are the ones that gastroenterologists will probably have in mind when they start trying to diagnose you (with some adjustments for each individual, for example in a young person bowel cancer is far less likely than in an older person).

But there are many, many conditions which cause digestive symptoms that are much more rare, and for that reason you may not come across them when you search online.

The way illnesses are classified may also affects this. For example, autonomic neurological problems can cause severe bowel problems, but they are often classed as neurological rather than gastroenterological, and may cause symptoms in other parts of the body which predominate. So if you search for neurological conditions, you'll come across causes of bowel problems that you might not find if you search for gastroenterological problems. In women, gynaecological problems can cause bowel symptoms (which was why I asked your gender), so again, reading about conditions which are primarily gynaecological may reveal causes of bowel symptoms which you wouldn't come across so easily if you only search for digestive conditions.

So I don't think the pill cam will be just looking for Crohn's. I am sure that there are many, many other possible causes for your symptoms. I don't think it's a matter of you either having Crohn's or not. Clearly something is causing your illness. Each test you've had so far will have ruled out some possibilities. So don't give up hope of getting a diagnosis if your pill cam doesn't identify Crohn's; keep an open mind about what might be wrong with you. There will be possible causes that you won't have come across in your reading and research.
01-14-2014, 09:44 AM   #12
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Yes it is frustrating. For me the Crohn´s sounds like the second worse to get after cancer so I am really hoping that thay could determine for sure that its not Crohn´s that I got

Is ther something else more then Crohn´s that might result in my problems and that a pill cam might finde? Or are we only looking for Crohn´s with this kind of examination?
I guess that the only way to determine for sure that you haven't got Crohns is to see the absence of it in the tests. But even If the tests are coming back normal there is no way for them to 100% say that you don't have Crohns and a test next year may show it but they can say it is most properly isn't Crohn's so I guess although it's frustrating you don't know what it is, kinda a relief that it most probs isn't crohns.

The pill can will just look for anything abnormal in your entire GI tract. If there is anything going on then it will see pick it up. So I guess it's just to see if there is anything they have missed that they can't see on the scans or tests!

I would imagine if that comes back fine also then they may start looking for other causes.
Hope they can find something at least!! You are obvs suffering
01-14-2014, 12:48 PM   #13
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Did you have the pain under the bellybutton constant? Was it really as high as 10/10?

I got pain in large colon and its not uncommon that it is throws rays out to the back. This pain is for the most part about 3/10.

Then I have the more or less constant pain from the small colon and this is as high as 5/10 at times.

I have my extreme pain from the small colon about 1 / month and that pain is 8/10, its without a doubt the most pain I ever had but i suspekt that it could go a bit higher until I faint.

My stomach is often vary swollen but not vary gassy.

If almost the entire small intestine was sverely inflamed, should that not make you vary tired all the time? If the small intestine have been inflamed over a long time, will a pill came show scares of this even if there is no inflames right now?
When my pain came in waves, it was 10/10. It was nauseatingly painful, and I would be on the verge of losing consciousness because of it. It was not constant. It happened probably twice a week at the most. As my treatment took effect, it gradually reduced. It came in waves, with a minute or two pause after each wave. Eventually, I would have to go to the bathroom. The pain would continue until I was able to do so. Sometimes it stopped after the first time, and others it would continue another one or two cycles.

I had milder pain as well, especially as I began treatment. My entire stomach area would ache dully. This pain would be about a 1 or 2 out of 10, maybe a 3 at the most. It was frustrating in that it was more constant. There was no relief from this ache, and it would continue for hours or days. It was fairly constant throughout the time I was on Prednisone.

I've also had pains around the belly button area that are more stabbing in nature, or just general discomfort. The appendix-like pain you mentioned has happened to me, as well - I was sent from my doctor's appointment immediately for a CT scan to check my appendix, but all was fine. I can only assume it was Crohn's, as the pain was similar to the pain I feel in my small intestine. It was about an 8 or 9 out of 10. It was paralyzing, but not nauseating and I didn't feel as if I was losing consciousness. I've also had pain and discomfort centered around the bottoms of my ribs on both sides.

However, I had less severe pain at other times as well.

Bloating is very common with most stomach problems, and definitely with IBD. You might not necessarily have gas, although that is another common symptom.

In all honesty, I don't know how fatigued I was. Closer to my diagnosis, when I began losing weight, I was malnourished and became noticeably fatigued. Unfortunately, I reacted fairly strangely to the Prednisone I was given after my diagnosis and my memory is a little shoddy. In addition to that, I began having symptoms around age eight and wasn't diagnosed until just before I turned seventeen. I'm really not certain what "healthy" feels like. But, it's important to keep in mind that although I had severe ulceration, it didn't seem to bleed significantly, so I didn't have any noticeable blood loss or symptoms from it.

I didn't say it was impossible - just unlikely, which it is. The more tests you have that don't pick up Crohn's, and the more your symptoms deviate from those typical of Crohn's, the more unlikely it is that you have it.
No. Crohn's effects all of us differently, and the symptoms listed are not atypical. I'm not sure why you're so set on this. Yes, the more tests you have that show nothing makes it less likely, but it's kind of important to note that OP's small intestine has yet to be thoroughly tested. Yes, as I have said before, it is possible that it is not IBD, but I see no reason whatsoever to say that it is unlikely.
01-14-2014, 02:00 PM   #14
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No. Crohn's effects all of us differently, and the symptoms listed are not atypical. I'm not sure why you're so set on this. Yes, the more tests you have that show nothing makes it less likely, but it's kind of important to note that OP's small intestine has yet to be thoroughly tested. Yes, as I have said before, it is possible that it is not IBD, but I see no reason whatsoever to say that it is unlikely.
You said "the more tests you have that show nothing makes it less likely" - which is exactly what I said, so I'm not sure why you think you're disagreeing.

Blood (from internal sources, not from cracked skin), fever and unintentional weight loss are signs that doctors use to distinguish Crohn's from IBS and other functional disorders. Without these, the diagnosis of IBD is less likely.

The op said: Diarrhea from time to time and some times blood (The blood was proved to be from cracks in rectum that after some years healed). For the most part its normal and I only go on the toilet about 1 time a day.

Having normal bms most of the time and going to the toilet once a day, with no bleeding, fevers or weight loss, having a normal colonoscopy and other tests does not constitute a typical case of Crohn's.
01-14-2014, 03:16 PM   #15
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Hi banshee,
I have been reading the threads of your forum and see that you have quite severe pain, which I'm sorry to hear btw!
It also seems that you have had an awful lot of tests which thankfully haven't shown anything major.
A couple of things you mentioned are very hard to pin point, I had crohns in my small bowel, terminal ileum to be exact. My pain was low down on the right, through to my back and cramping on the left. I would never have been able to say which part of my body was going wrong. I suffered like this for 15 years before I was diagnosed with crohns following emergency surgery.
There are a lot of reasons that could cause these pains and being anxious because of not getting a diagnosis, your family history and worrying about the situation have a tendency to make things a lot worse. Now please don't think I'm saying there is nothing wrong, I am actually trying to reassure you that with any luck an ibs or similar diagnosis may be made. As unxmas has said the pill cam would be an ideal way of testing, it's unobtrusive and fairly conclusive. If you are regularly having these pains and at the time of the test the result shows no inflammation, stricture, abscess etc then at least you will know its not the worst case ie cancer or as you said second place crohns. This in itself will ease your worry and anxiety and also give you other opportunities to pursue what is causing your pains.
I wish you all the best and keep us posted. There are a lot of very experienced people on this forum, few are medically trained but all have first hand knowledge of crohns and how it controls people's lives. It has helped me massively and I hope we can do the same for you.

Last edited by grt73; 01-14-2014 at 03:17 PM. Reason: Shocking grammar
01-14-2014, 04:42 PM   #16
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Hi Banshee and welcome to the forum!

You mentioned cracks in your rectum, those would be fissures which are more common in people who have Crohn's disease and isn't seen in those who have Ulcerative Colitis. http://www.crohnsforum.com/wiki/Croh...rative-Colitis

You also mentioned "nerve pain," are you sure that's what it is? How was that diagnosed? Do you have any other symptoms like numbness, pins and needles sensations, tingling etc?

If the pill cam doesn't find anything then there are other tests you could do such as an MRE, small bowel follow through and down the road if your symptoms don't improve or get worse with still no diagnosis and other tests don't finding anything, you could have a Double-balloon enteroscopy done which is a scope of the small bowel allowing them to take biopsies which the pill cam can't do. You mentioned though that your GI will likely discharge you if they don't find anything with the pill cam. Don't give up. Find another doctor to continue testing and please don't accept IBS as a diagnosis. We see so many people on the forum who are told it's just IBS when years later it's found to be Crohn's.

I hope that it isn't Crohn's but we have a lot of members who had a lot of tests done (even the pill cam) that showed nothing. Years later upon further testing they did get a diagnosis. There are multiple reasons as to why tests would seem to be all clear but having symptoms means that something is actually going on so it's important to continue testing until the cause is found. We don't want it to be Crohn's but it is possible and we'll help provide any information you need along the way to a diagnosis.

This link talks about all the tests used to diagnose IBD (if you haven't had some of them done, talk to your GI about having them done): http://www.crohnsforum.com/showthread.php?t=54697

Here's the link to the Undiagnosed section if you'd like to talk to others who are in the same boat at you: http://www.crohnsforum.com/forumdisplay.php?f=75

Keep us posted on how you're doing.

Whether Crohn's is less likely or unlikely at this point is irrelevant. Banshee came onto the forum to find out more about IBD to help them get a diagnosis. Not a Crohn's diagnosis specifically but being informed gives them the power to take their health into their own hands. Since this is a support forum for those with all forms of IBD or those who are undiagnosed, we will answer any questions they may have and point them in the right direction. Thank you.
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Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
01-15-2014, 09:57 AM   #17
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I don't know which specific illnesses a pill cam can detect, but I think it's worth mentioning that Crohn's and UC are two of the most common gastrointestinal problems. Along with IBS, bowel cancer and a few other things, those are the ones that will come up when you search the Internet for your symptoms, and those are the ones that gastroenterologists will probably have in mind when they start trying to diagnose you (with some adjustments for each individual, for example in a young person bowel cancer is far less likely than in an older person).

But there are many, many conditions which cause digestive symptoms that are much more rare, and for that reason you may not come across them when you search online.

The way illnesses are classified may also affects this. For example, autonomic neurological problems can cause severe bowel problems, but they are often classed as neurological rather than gastroenterological, and may cause symptoms in other parts of the body which predominate. So if you search for neurological conditions, you'll come across causes of bowel problems that you might not find if you search for gastroenterological problems. In women, gynaecological problems can cause bowel symptoms (which was why I asked your gender), so again, reading about conditions which are primarily gynaecological may reveal causes of bowel symptoms which you wouldn't come across so easily if you only search for digestive conditions.

So I don't think the pill cam will be just looking for Crohn's. I am sure that there are many, many other possible causes for your symptoms. I don't think it's a matter of you either having Crohn's or not. Clearly something is causing your illness. Each test you've had so far will have ruled out some possibilities. So don't give up hope of getting a diagnosis if your pill cam doesn't identify Crohn's; keep an open mind about what might be wrong with you. There will be possible causes that you won't have come across in your reading and research.
I have been examen by a neurologist and she explained a lot of how it works in a good way but you do get a bit suspicious when she needs to go to the doctor next door before rule me out for any neurological problems. The doctor next door did not even see me.

The problem is that you need a referral to get to a neurologist or a stomach specialist here in Sweden so its not that simple to "just go to another doctor"

I am hoping that they will find something that can be cured with the cam examination. Life is to hard to live this way, to much pain.

Thanks for your support!
01-15-2014, 10:10 AM   #18
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I guess that the only way to determine for sure that you haven't got Crohns is to see the absence of it in the tests. But even If the tests are coming back normal there is no way for them to 100% say that you don't have Crohns and a test next year may show it but they can say it is most properly isn't Crohn's so I guess although it's frustrating you don't know what it is, kinda a relief that it most probs isn't crohns.

The pill can will just look for anything abnormal in your entire GI tract. If there is anything going on then it will see pick it up. So I guess it's just to see if there is anything they have missed that they can't see on the scans or tests!

I would imagine if that comes back fine also then they may start looking for other causes.
Hope they can find something at least!! You are obvs suffering
Yes, It is really frustrating that even if a examination done a couple of months ago did not show any signs a new examination to day might show.

Its really hard to get examinations multiple times here in Sweden. If the doc do not find anything the first time they are likely to just say that you have to live with this. In this case I got a second opinion be because I got diffrent and more extreme pain.

They have however not found anything yet so its possible that I will hear "You have to learn to live with this pain" again.

It was vary hard to get better painkillers for when the stomach goes in to extreme pain. My Stomach doc denied me anything stronger then Ibuprofen. A ER dcoctor did however give me Tramadol but I have only hade to use it once so far.

According to my stomach doc, painkillers might destroy the nervs in stomach and I could get more pain then I already have.

Thanks for your support!
01-15-2014, 10:31 AM   #19
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When my pain came in waves, it was 10/10. It was nauseatingly painful, and I would be on the verge of losing consciousness because of it. It was not constant. It happened probably twice a week at the most. As my treatment took effect, it gradually reduced. It came in waves, with a minute or two pause after each wave. Eventually, I would have to go to the bathroom. The pain would continue until I was able to do so. Sometimes it stopped after the first time, and others it would continue another one or two cycles.

I had milder pain as well, especially as I began treatment. My entire stomach area would ache dully. This pain would be about a 1 or 2 out of 10, maybe a 3 at the most. It was frustrating in that it was more constant. There was no relief from this ache, and it would continue for hours or days. It was fairly constant throughout the time I was on Prednisone.
I've also had pains around the belly button area that are more stabbing in nature, or just general discomfort. The appendix-like pain you mentioned has happened to me, as well - I was sent from my doctor's appointment immediately for a CT scan to check my appendix, but all was fine. I can only assume it was Crohn's, as the pain was similar to the pain I feel in my small intestine. [/QUOTE]

So far, it sounds much as my symtoms, more or less constant pain around bellybutton. Then from time to time(in my case 1/month and your 2/week) get extreme pain at the appendicitis area.

Would it help to g on the toilet?


It was about an 8 or 9 out of 10. It was paralyzing, but not nauseating and I didn't feel as if I was losing consciousness. I've also had pain and discomfort centered around the bottoms of my ribs on both sides.

However, I had less severe pain at other times as well.
I have hade minor pain from these places, its where the large colon is. But I have also hade pain right below the solarplexius.

Bloating is very common with most stomach problems, and definitely with IBD. You might not necessarily have gas, although that is another common symptom.

In all honesty, I don't know how fatigued I was. Closer to my diagnosis, when I began losing weight, I was malnourished and became noticeably fatigued. Unfortunately, I reacted fairly strangely to the Prednisone I was given after my diagnosis and my memory is a little shoddy. In addition to that, I began having symptoms around age eight and wasn't diagnosed until just before I turned seventeen. I'm really not certain what "healthy" feels like. But, it's important to keep in mind that although I had severe ulceration, it didn't seem to bleed significantly, so I didn't have any noticeable blood loss or symptoms from it.
When did you began to lose weight? I have so fare not notice anything on fatigued or weight but I have only hade it about 5-6 years.

Thanks for you taking the time to explain.
01-15-2014, 10:48 AM   #20
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So far, it sounds much as my symtoms, more or less constant pain around bellybutton. Then from time to time(in my case 1/month and your 2/week) get extreme pain at the appendicitis area.

Would it help to g on the toilet?
I wouldn't strain to go. Bowel movements relieved my pain at times, but I knew I had to go. Straining may cause further problems.

When did you began to lose weight? I have so fare not notice anything on fatigued or weight but I have only hade it about 5-6 years.

Thanks for you taking the time to explain.
I actually began to lose weight about a month before I was diagnosed. By that point, I had been experiencing symptoms for nine years. I've always been small - in part, it's genetics, but I think malnutrition during childhood played a minor role as well. I only lost a few pounds - I dropped from 98lbs to around 90lbs, but because I was already so small, my doctors were very concerned and considered hospitalizing me because of it. Like I said above, this amount of a fluctuation would go unnoticed in a normal-sized person and would certainly be no cause for alarm.

It's no problem at all!
01-15-2014, 12:04 PM   #21
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Before you got the diagnose, did you have any other problems then stomach related?

I have big problems with my neck, it feels like the trapezius muscle is working to hard and it is often resulting in headache. I do sit alot at the computer but I have done MUCH to solve the ergonomics without help. It started about 1/2 after the stomach problem started.

I have also got problem with my left leg this year. It feels a bit like muscle soreness after hard training. The ache is moving from the buttock down to the fibula. Its never in the entire leg, so one part at a time.
01-15-2014, 12:21 PM   #22
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Hi banshee,
I have been reading the threads of your forum and see that you have quite severe pain, which I'm sorry to hear btw!
It also seems that you have had an awful lot of tests which thankfully haven't shown anything major.
A couple of things you mentioned are very hard to pin point, I had crohns in my small bowel, terminal ileum to be exact. My pain was low down on the right, through to my back and cramping on the left. I would never have been able to say which part of my body was going wrong. I suffered like this for 15 years before I was diagnosed with crohns following emergency surgery.
There are a lot of reasons that could cause these pains and being anxious because of not getting a diagnosis, your family history and worrying about the situation have a tendency to make things a lot worse. Now please don't think I'm saying there is nothing wrong, I am actually trying to reassure you that with any luck an ibs or similar diagnosis may be made. As unxmas has said the pill cam would be an ideal way of testing, it's unobtrusive and fairly conclusive. If you are regularly having these pains and at the time of the test the result shows no inflammation, stricture, abscess etc then at least you will know its not the worst case ie cancer or as you said second place crohns. This in itself will ease your worry and anxiety and also give you other opportunities to pursue what is causing your pains.
I wish you all the best and keep us posted. There are a lot of very experienced people on this forum, few are medically trained but all have first hand knowledge of crohns and how it controls people's lives. It has helped me massively and I hope we can do the same for you.
Thanks for your response.

Yes I know that the mind can play tricks that might feel like serious illnesses. And this might be the case in the beginning. My stomach problems began with light symtoms, about 1-2 years after it began, we got our first child. This was a big thing for me and it was the same time that my stomach started to be a real problem. From this point the pain have grown for each year. After the first set of examinations was done I was not that anxious anymore. The only thing that made my body tense was tha pain and this is true even today. I would do everything just to get pain free.

Im not sure what I will do if the pillcamera will result in nothing but thats a later problem.

I have hade my stomach problem when doing all the examinations but not that real extrem pain. The strange thing is that every time I hade done a CT scan I have hade a calm stomach without pain from having alot of pain just the day before.

Yes I have notice that here is a lot of nice members on this forum, its really nice to see
01-15-2014, 12:46 PM   #23
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Hi Banshee and welcome to the forum!
Thanks you! it seemt to be a vary nice forum

You mentioned cracks in your rectum, those would be fissures which are more common in people who have Crohn's disease and isn't seen in those who have Ulcerative Colitis. http://www.crohnsforum.com/wiki/Croh...rative-Colitis
Yes but is it not quite common with fissures in rectum? That was what my doctor said?

You also mentioned "nerve pain," are you sure that's what it is? How was that diagnosed? Do you have any other symptoms like numbness, pins and needles sensations, tingling etc?
The leg pain are felt a couple of hours per day, sometime it can be gone for a week. It started for about 6 month ago.

Its not numbness ore needles. It feels more like deep mucel soreness after hard training. But it moves, buttock, thigh and calf. Its only in left leg. I do feel a bit of pain from time to time in lumbar as well but its miner and often when I lift heavy things. The MR showed a small change in lumbar but nothing that could be operated. There is no diagnose more then I should go to a physiotherapist.

The neck pain is partly from that I sit alot at the computer, but even after alot of physiotherapist och changes with ergonomics (stand/sit, pause every 50 min for execiese and so on) nothing helps. Im certain that the stomach problem is involved in one way or the other but It could just be the pain from the stomach that makes my body more tense.

If the pill cam doesn't find anything then there are other tests you could do such as an MRE, small bowel follow through and down the road if your symptoms don't improve or get worse with still no diagnosis and other tests don't finding anything, you could have a Double-balloon enteroscopy done which is a scope of the small bowel allowing them to take biopsies which the pill cam can't do. You mentioned though that your GI will likely discharge you if they don't find anything with the pill cam. Don't give up. Find another doctor to continue testing and please don't accept IBS as a diagnosis. We see so many people on the forum who are told it's just IBS when years later it's found to be Crohn's.

I hope that it isn't Crohn's but we have a lot of members who had a lot of tests done (even the pill cam) that showed nothing. Years later upon further testing they did get a diagnosis. There are multiple reasons as to why tests would seem to be all clear but having symptoms means that something is actually going on so it's important to continue testing until the cause is found. We don't want it to be Crohn's but it is possible and we'll help provide any information you need along the way to a diagnosis.
Yes, I agree, but the problem here in Sweden is that the doctor just sais "you will have to learn to live with this" and nothing more is done. its not possible to get apointments to specialist(hospital) without a referral from a health center and a doc at the health center will not see any point in that becouse all examinations have already been done. Simple there is nothing more thay can do(they say). I have also contaced other specialists from other hospitals that have looked in to my case and thay have also said that there is nothing more to do for me. And this was before I sugested the pillcam my self.

The stomach doc I got now are not coming with any suggestions more then medicins so I have been suggesting most of the examinations myself. Its not fun when it feels like Im the only one that want to find the problem.

This link talks about all the tests used to diagnose IBD (if you haven't had some of them done, talk to your GI about having them done): http://www.crohnsforum.com/showthread.php?t=54697

Here's the link to the Undiagnosed section if you'd like to talk to others who are in the same boat at you: http://www.crohnsforum.com/forumdisplay.php?f=75

Keep us posted on how you're doing.

Whether Crohn's is less likely or unlikely at this point is irrelevant. Banshee came onto the forum to find out more about IBD to help them get a diagnosis. Not a Crohn's diagnosis specifically but being informed gives them the power to take their health into their own hands. Since this is a support forum for those with all forms of IBD or those who are undiagnosed, we will answer any questions they may have and point them in the right direction. Thank you.
Thanks for your response, I will look at the links.
01-15-2014, 01:48 PM   #24
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Before you got the diagnose, did you have any other problems then stomach related?

I have big problems with my neck, it feels like the trapezius muscle is working to hard and it is often resulting in headache. I do sit alot at the computer but I have done MUCH to solve the ergonomics without help. It started about 1/2 after the stomach problem started.

I have also got problem with my left leg this year. It feels a bit like muscle soreness after hard training. The ache is moving from the buttock down to the fibula. Its never in the entire leg, so one part at a time.
No other problems that I remember before. I did get severe headaches, but that was related to poor eyesight, as they stopped when that was dealt with. I have other problems now, but before diagnosis, I don't remember any symptoms that were not gastrointestinal.

Have you had your vitamin levels checked? Low levels can cause muscle problems.
02-15-2014, 09:00 AM   #25
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Yet again I hade to go to the ER for extreme pain in the stomach, this time it was located in the entire small intestine. The AR said that there was nothing thay could do more then give me painkillers.

I got a small shot of Morphine direcly in to the blood and also a even smaller shot direcly in to the stomach. It took the pain down from 9/10 to 7/10 and it was possible to sleep for a hour.

After a 2-3 hours the Morphines effect was gone and I hade the extreme pain again. Thay first said that thay could not give me more painkillers becouse it would not help!? Thay also insisted that I should go home(wih extreme pain)!! After a long talk thay gave me some kind of morthin pill that I puked a lot from. The pain in the stomach was however down on 5/10 now and there was no problem to sleep. I got to spend the night at the hospilat with IV.

The days after this the stomach was vary sore especially when pressing on the appendicitis but it got better for every day that went by.

After about 4 days after the ER visit I got a capsule endoscopy and everything whent well. At this paoint I hade not that much pain in stomach but I hope that thay will see whats wrong! According to my doctor the capsule endoscopy is able to see the appendicitis area as well?

Thay have said that I have to wait about 2-3 weeks for them to process the images from the camera.

I have now began to eat as rugular but my stomach is not feeling good at all I fille sharp pain(4/10) all over the stomach.

Its really strange that the extreme pain come about once a week in the beginning and now once a month. I try to eat the same food mor or less every week so I can´t understand why it explodes once a month.
02-15-2014, 10:15 AM   #26
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Its really strange that the extreme pain come about once a week in the beginning and now once a month. I try to eat the same food mor or less every week so I can´t understand why it explodes once a month.
Food often doesn't have anything to do with intestinal pain, so there's no reason keeping your diet consistent should result in consistent symptoms.

What makes you suspect appendicitis? There's no area of the stomach or abdomen where pain specifically indicates a problem with the appendix.

Unfortunately many illnesses are just too complex to be able to determine the cause from things like pain location, and many don't correspond to any one factor such as diet.

Managing pain is a challenge for doctors - I know what it's like to be desperate for pain relief, but people can't always function on morphine - it has other risks, and for chronic, on-going pain it may not be suitable due to how readily it results in tolerance and addiction. It might be worth seeing if you can be prescribed a supply of strong pain-killers that you only take during the worst episodes of pain, and something more mild and less addictive to get you through the rest of the time.
02-15-2014, 10:34 AM   #27
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Food often doesn't have anything to do with intestinal pain, so there's no reason keeping your diet consistent should result in consistent symptoms.
I know that some food is making it worse but yes its possible that food is not the couse of the extreme pain, who knows?


What makes you suspect appendicitis? There's no area of the stomach or abdomen where pain specifically indicates a problem with the appendix.
I know where the appendix is located and when I have just hade extreme pain I can hardly touch this area before it make alot of pain. This will fade away after about a week. But it comes and goes in diffrent pain levels. Its possible that its a refer pain, who knows? I only explains my symtoms.

Managing pain is a challenge for doctors - I know what it's like to be desperate for pain relief, but people can't always function on morphine - it has other risks, and for chronic, on-going pain it may not be suitable due to how readily it results in tolerance and addiction. It might be worth seeing if you can be prescribed a supply of strong pain-killers that you only take during the worst episodes of pain, and something more mild and less addictive to get you through the rest of the time.
I do not usualy take pain killers but I have some kind of morphine pill for the extreme pain, this have however only worked once.

When I got the extreme pain I need a painkiller that takes away most of the pain for a half a day.
02-16-2014, 04:16 AM   #28
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One thing that I wounder is why the ER simple not take a catscan when Im there in extreme pain? It is most likely to find the problem at this point then giving me a catscan a couple of weeks later. What am I missing?
02-16-2014, 05:20 AM   #29
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I know where the appendix is located and when I have just hade extreme pain I can hardly touch this area before it make alot of pain. This will fade away after about a week. But it comes and goes in diffrent pain levels. Its possible that its a refer pain, who knows? I only explains my symtoms.


But that's my point: pain can be referred, which means you feel the pain in a different location from where the source of pain actually is. Also your appendix is squashed in with your intestines and other organs - you can't tell whether your appendix is the cause simply by where the pain is felt.

I think you're correct that having a scan and other tests done whilst your pain is at its height stands the best chance of diagnosing it. When you were at the hospital, did they run tests such as blood tests, checking your temperature, blood pressure, etc.? I haven't been to the emergency room many times, but on the occasion I did go for abdominal pain, they ran these basic tests first, and then because the results were abnormal (I had a fever, low blood pressure, and my blood test indicated inflammation), they move on to more advanced investigation.
02-16-2014, 05:54 AM   #30
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I think you're correct that having a scan and other tests done whilst your pain is at its height stands the best chance of diagnosing it. When you were at the hospital, did they run tests such as blood tests, checking your temperature, blood pressure, etc.? I haven't been to the emergency room many times, but on the occasion I did go for abdominal pain, they ran these basic tests first, and then because the results were abnormal (I had a fever, low blood pressure, and my blood test indicated inflammation), they move on to more advanced investigation.
Yes, thay took som blood work and the temperature but nothing strange as usual. Thay did talk about a small increase of somthing with the blood cells but I hade so much pain that I did not pay enouth attention.

Thay have talked about the blood cells at a erlier visit at the ER as well but when the pain was gone the blood work lookt perfect again.

It is however a small increase and thats why thay do not act on it.

I will try to convince them next time of doing a catscan or whatever thay feel could show the problem. It will probably not work but it is worth a shoot.
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