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Crohn's disease question (pre- diagnosis)

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Posted 8/30/2016 1:11 AM (GMT 0)
Hey everyone!
(SORRY for the TMI)

I have been suffering from severe abdominal pain for around a year now.
I am very close to diagnosis but they can not decide if it is Crohn's or Endometriosis (a gynae condition).
These have a few similar symptoms involving BM.

As a result I am undergoing a laparoscopy operation in two days to see if they can find any endometriosis.
I dont think it is endometriosis as I do not share that many symptoms compared to Crohn's and UC, but i am desperate to find out what is causing my pain and awful symptoms so I can be treated.

I understand that Crohn's causes problems inside of the bowels but does it affect the outside wall of the bowel aswel?
I am wondering this because when they do my operation they will be looking inside my abdominal cavity and inspecting the outside of my intestines, so if it is detectable on the exterior bowel wall they will be able to see it.

I am also wondering does anyone who suffers with crohns have a mixture of diarrhea and normal/hard stools that tend to be hard to pass?

Does anyone experience severe bloating?

Does anyone find that there bowel movements are allot more painful with diarrhea than hard stools?
and does anyone know why it is more painful for people with suspected IBD to be in more pain with diarrhea than hard stools?

I would appriciate it if anyone with crohns would reply to this and answer my questions, it would really put my mind at ease.
Thanks in advance! :)
Posted 8/30/2016 2:18 AM (GMT 0)
Hi, and welcome!

First, don't worry about TMI here. We're all in the same boat, and we've seen and heard so much worse than what you've actually said, haha!

So, yes, Crohn's can affect all linings of the bowel, but I do think they'd be able to tell a difference between the endometriosis and the Crohn's, especially based on location. Endometriosis scar tissue will radiate away from a different place than Crohn's scar tissue would (if it is even on the outside).

I am really surprised they aren't doing a colonoscopy first, as opposed to a laproscopy. That seems a bit extreme if they can't decide if it's one or the other. Have they done any blood work at all? You can't diagnose Crohn's with labwork, but you can get an idea if a few levels are elevated. If they aren't elevated, that doesn't mean negative. But it's a much easier indicator!

It is VERY common to have a mixture of formed stool vs. diarrhea. I think that the diarrhea hurts worse because it is moving much more quickly through the bowel. It also will bring some acid along with it, I imagine.

Bloating is extremely common as well. :)
Posted 8/30/2016 2:18 AM (GMT 0)
Erm, before they cut you up, have they tried every other method of examining your bowels, e.g. colonoscopy, MRI/CT scan, pillcam? I don't know about endometriosis I'm afraid, but surgery isn't how Crohn's is usually diagnosed.

Anyway, to answer your first question, Crohn's can cause a characteristic fat-wrapping outside the bowel. However, not all Crohn's patients have it and I have never heard of anyone being diagnosed that way. More info on it here if you're interested: theibdimmunologist.com/creeping-fat-in-crohns-disease

I have had a mixture of diarrhoea and hard stools in the past, but what you are describing is very common and not unique to Crohn's. Ditto bloating and pain (although I don't know about increased pain with diarrhoea - are you talking about stomach cramps or rectal pain?)
Posted 8/30/2016 2:21 AM (GMT 0)
Hi Ellie, I hope you get a diagnosis soon so you can get some answers! And you don't have to worry about TMI here:)

have you had a colonoscopy yet? that would give you a much better idea about chances of it being crohns. I would have thought that would be a good diagnostic choice before going for exploratory surgery.

I am curious as to whether it is possible for it to be seen as well. My hunch would be if it is severe enough then yes, since crohns involves all layers of the bowel wall and I know at least once with me even my abdominal wall was considered inflamed on imaging results. Also it is possible that adhesions or scar tissue might be found from previous inflammation but it would have to have been pretty severe I think.
I have had times where my bowel movements are a mix of each. I would assume it would be more painful in the area due to increased inflammation (and in turn, more inflammation = more diarrhea) but that's a guess.
Severe bloating/ distention is a huge problem for me even now with the disease under control.

Good luck with the surgery and hang in there!
Posted 8/30/2016 2:36 AM (GMT 0)

scifigal2k said...
Hi, and welcome!

First, don't worry about TMI here. We're all in the same boat, and we've seen and heard so much worse than what you've actually said, haha!

So, yes, Crohn's can affect all linings of the bowel, but I do think they'd be able to tell a difference between the endometriosis and the Crohn's, especially based on location. Endometriosis scar tissue will radiate away from a different place than Crohn's scar tissue would (if it is even on the outside).

I am really surprised they aren't doing a colonoscopy first, as opposed to a laproscopy. That seems a bit extreme if they can't decide if it's one or the other. Have they done any blood work at all? You can't diagnose Crohn's with labwork, but you can get an idea if a few levels are elevated. If they aren't elevated, that doesn't mean negative. But it's a much easier indicator!

It is VERY common to have a mixture of formed stool vs. diarrhea. I think that the diarrhea hurts worse because it is moving much more quickly through the bowel. It also will bring some acid along with it, I imagine.

Bloating is extremely common as well. :)

Hey!
I have had a sigmoidoscopy a while back but that was before all of my pain and symptoms started, I kind of feel like they are reluctant to do another scope because I have had one before, which is very stupid I know! but I am going to push for a one either that or go private (instead of the NHS as I live in the UK). I have also heard things and read in the news in the UK that the NHS medical staff are saying no to scans and diagnostic procedures due to cuts in the money they recieve, so this may be another reason why they are doing this.
Personally I would of thought that a laparoscopy would cost alot more than a colonoscopy!

My blood work shows I am slightly anemic and that was it but they only done a full blood count and nothing else. I have also lost 3 stone in around 10 months which is loads for me! I have very very high calprotectin levels of 1000> when they are meant to be <60 acording to my GP.

I really appriciate your reply thank you!
Posted 8/30/2016 2:44 AM (GMT 0)

NiceCupOfTea said...
Erm, before they cut you up, have they tried every other method of examining your bowels, e.g. colonoscopy, MRI/CT scan, pillcam? I don't know about endometriosis I'm afraid, but surgery isn't how Crohn's is usually diagnosed.

Anyway, to answer your first question, Crohn's can cause a characteristic fat-wrapping outside the bowel. However, not all Crohn's patients have it and I have never heard of anyone being diagnosed that way. More info on it here if you're interested: theibdimmunologist.com/creeping-fat-in-crohns-disease

I have had a mixture of diarrhoea and hard stools in the past, but what you are describing is very common and not unique to Crohn's. Ditto bloating and pain (although I don't know about increased pain with diarrhoea - are you talking about stomach cramps or rectal pain?)

Hi!
I have had a sigmoidosopy but that was a while back before any of my problems started, which I think is why they havent gave me a colonoscopy. I have a feeling they are wanting to do the surgery to rule out other conditions but I am almost completely convinced that it is IBD!
Thank you so much for you reply! :)
Posted 8/30/2016 2:50 AM (GMT 0)
Sigmoidoscopy is basically a worthless diagnostic scope for many crohns patients especially early on in the disease before it gets severe as it doesn't go far enough. ( only really good if you're known to have crohns in that area and need to have it rechecked) They need to be checking the terminal ileum and taking biopsies. I would really try to convince them to do that because if it is crohns there are risks with having laproscopic surgery especially if it turns out you have a tendency towards fistula formation. When i was considering hernia surgery even in remission my surgeon said no way to laparoscopy because of the chances of it not healing right.
In my opinion you need more doctor's opinions since what you are saying with anemia, weight loss and elevated calprotectin is concerning

Post Edited (Labradorite) : 8/29/2016 8:54:20 PM (GMT-6)

Posted 8/30/2016 3:10 AM (GMT 0)
Hi
I will tell you for Endometrious your OBGYN should be able to detect through abdominal and vaginal sonogram. Because this is usually a mass it is easily detected. I would recommend having this done prior to any surgery. Also agree with the other post a MRI/ CT, endoscopy, or camera pull is the way to go with Chornes or IDB evaluation.

Listen to your voice and be your own advocate. Good luck!
Posted 8/30/2016 3:14 AM (GMT 0)

Labradorite said...
Hi Ellie, I hope you get a diagnosis soon so you can get some answers! And you don't have to worry about TMI here:)

have you had a colonoscopy yet? that would give you a much better idea about chances of it being crohns. I would have thought that would be a good diagnostic choice before going for exploratory surgery.

I am curious as to whether it is possible for it to be seen as well. My hunch would be if it is severe enough then yes, since crohns involves all layers of the bowel wall and I know at least once with me even my abdominal wall was considered inflamed on imaging results. Also it is possible that adhesions or scar tissue might be found from previous inflammation but it would have to have been pretty severe I think.
I have had times where my bowel movements are a mix of each. I would assume it would be more painful in the area due to increased inflammation (and in turn, more inflammation = more diarrhea) but that's a guess.
Severe bloating/ distention is a huge problem for me even now with the disease under control.

Good luck with the surgery and hang in there!

Hey! Thank You :-) No I have only had a sigmoidoscopy which was before all the complications started so there is no way they could of picked up anything to do with my complications now.

That is exactly what I was thinking! I was just thinking that because if the surgeon finds crohns when doing the surgery then I might get an answer on the day! I am so impatient but its just very awful when you are in pain all the time.

Thank you so much for the reply it really helped me! :)
Posted 8/30/2016 3:23 AM (GMT 0)

Labradorite said...
Sigmoidoscopy is basically a worthless diagnostic scope for many crohns patients especially early on in the disease before it gets severe as it doesn't go far enough. ( only really good if you're known to have crohns in that area and need to have it rechecked) They need to be checking the terminal ileum and taking biopsies. I would really try to convince them to do that because if it is crohns there are risks with having laproscopic surgery especially if it turns out you have a tendency towards fistula formation. When i was considering hernia surgery even in remission my surgeon said no way to laparoscopy because of the chances of it not healing right.
In my opinion you need more doctor's opinions since what you are saying with anemia, weight loss and elevated calprotectin is concerning

Hi!
Your reply has been really helpfull! I am starting to reconsider the surgery I just dont understand why the doctors are wanting the surgery to go ahead when all the symptoms point to endometriosis. I think you are right it seems the doctors I have been seeing are ignoring the fact that what is going on with me is a problem even though it is infront of them, I must just be stuck with the kind of doctors who do not like to diagnose people with IBD... I heard there are some like that.
Thank you very much for your reply!
Posted 8/30/2016 3:26 AM (GMT 0)

Princess4u said...
Hi
I will tell you for Endometrious your OBGYN should be able to detect through abdominal and vaginal sonogram. Because this is usually a mass it is easily detected. I would recommend having this done prior to any surgery. Also agree with the other post a MRI/ CT, endoscopy, or camera pull is the way to go with Chornes or IDB evaluation.

Listen to your voice and be your own advocate. Good luck!

Hi!
I only had an abdominal ultrasound for some reason, so if they had given me the right tests I could of possibly ruled out endometriosis for good! I will try to push my gastro consultant for a scope.
Thank you for your advice :)
Posted 8/30/2016 12:40 PM (GMT 0)
"I have had a sigmoidoscopy a while back but that was before all of my pain and symptoms started,"

what was the reason for this sigmoidoscopy ?
Posted 8/30/2016 3:48 PM (GMT 0)
After my first colonoscopy, my GI said that he suspected I have a gynecological problem as I had pressure over the rectum. I saw many gynecologists but in vain and was even about to have a laparoscopy when I saw one last gynecologist who asked me a number of questions about my pain and period. Based on my answers, he insisted I had problems with my colon.

I agree w the others that you should have a colonoscopy. They had suspicions first of Crohn's as my scopes and scans were clean but the biopsies showed indications of Crohn's. After 9 years, I developed a perianal fistula and diagnosis has been confirmed.

I have more pain w diarrhea as I think that the rapid movement of stool in the intestines causes this pain. This is unlike when I have constipation or when I take imodium, I have less pain. I think it all has to do for me w motility.

Bloating/distension is a normal characteristic of my life.

Good luck with your laparoscopy :/
Posted 9/12/2016 6:05 AM (GMT 0)
Hey everyone! Just an update I have now been diagnosed with Crohn's disease of and it is a relief to be able to put a name to my pain and suffering!

I went through with the laparoscopy after speaking with my gynaecologist about it and he recommended I go ahead just to rule it out and it came back negative!!!
He did find that my bowel was swollen to the dimension of a football, so that is what was causing all of my pain!

Thank you so much for your replies!
Posted 9/12/2016 11:36 AM (GMT 0)
Ah right. Guess the bowel would be pretty swollen with active Crohn's. At any rate, I'm glad you got a diagnosis, but sorry that it's Crohn's. Are they gonna bother with a colonoscopy now or will you just go straight onto treatment?
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