Elusive diagnosis

[Sharon_Lynn]

I am at my wits end and I am hoping I can get some advice here... I believe that I have Crohn's Disease although everything comes back fine.

3 yrs ago or so I started having horrible pain in my abdomen, they did all sorts of tests and they came back fine. I even had one awful surgeon tell me that the pain was from my belly fat (yeah I wanted to choke him). Since I was female they kept sending me back to my gynecologist saying it was from female issues. Finally in Dec 2013 my gyno said alright lets do a partial hysterectomy. So I had it and just had one bout of really awful pain after the surgery. Although the surgeon told me I had alot of scar tissue from my appendix surgery (which is where the majority of my pain is located and near my gallbladder) and where I had my c-section. Since then I have been pain free with occasional bouts of bathroom issues they said was IBS. The Dr. did say it could be an irritation, but I'm sorry it is in the same spots EVERY SINGLE TIME. That is too much to be a coincidence!

Until about a month and a half ago, I could not even eat a sandwich without bad pain. Like go to the ER type pain. Cat scan came back fine, but again pain in those same areas. We did a endoscopy and colonoscopy and all came out fine. 3 yrs ago I had the small bowel study done and when they put the paddle on the one spot my intestines twisted near the ileum.

I can barely make it out of the house for fear I am going to have an accident in my pants. I barely made it through the market the other day and I pooped so much it clogged their toilet. In fact I have broken 2 toilets at my complex because of how often I go.

I have an appt. tomorrow afternoon, but I am at my wits end. This CANNOT just be IBS. That would be pain all over but I have pain in those 2 spots (all gallbladder tests are normal). What else can I ask the Dr. to do to possibly get an accurate diagnosis. This is awful and affecting my quality of life.

I have heard of a pillcam..... does that work? I think I may have the Crohn's in that spot. But they just did the colonoscopy, will they do the pillcam test?

Any help or advice would be appreciated.

 

[Clash]

Sorry for all you are going through. You could ask for an MRE, which can be more concise imaging or a pill cam, which will allow the doc to see glimpses of the small bowel that cannont be seen with upper and lower scopes.

Just keep pushing for answers. If the doc thinks IBS has he px'ed meds for it?

Have you had a fecal calprotectin stool test? It tests for inflammation in the bowels, not specifically IBD but should test high if it is IBS.

 

[Pilgrim]

Clash meant should NOT test high if IBS.

 

[Clash]

Yep! Sorry me and my cell don't do speed posting well! Ha!

 

[UnXmas]

I'm sorry you're having such a difficult time getting a diagnosis. IBS is a diagnosis of exclusion, so when someone has digestive symptoms in the absence of positive test findings, that's diagnosis doctors give, and personally I think all sorts of problems get (mis)diagnosed as IBS. I dont think IBS has to have "pain all over", just digestive symptoms and negative tests, but also there are certain digestive symptoms which, if present, mean a diagnosis of IBS can't be made. These symptoms include passing blood, fevers, diarrhoea during the night and unintentional weight loss.

Is there anything in particular that makes you believe you have Crohn's? There are a huge number of medical conditions that can cause digestive symptoms. A negative colonoscopy and endoscopy make Crohn's unlikely.

I would not ignore other possibilities such as gynaecological conditions. They can cause abdominal pain. The surgeries you've had could also be a possible cause of your pain in some way. Neurological and rheumatological conditions can also affect the digestive system. There are many possibilities, so if they can't find a cause when testing your digestive system, there must be a cause somewhere else.

My doctors said a pill cam is unlikely to find abnormalities that other tests have not picked up on - but that was in very different circumstances. I was already diagnosed and had had an endoscopy and small bowel MRI (and I no longer have a large intestine). My doctors wanted to do the pill cam to check they hadn't missed anything, but since they themselves said it probably wouldn't add to the information from the endoscopy and MRI, I decided it wasn't worth it in my case. I think you'd have to ask your doctors whether it would be useful for you, as your circumstances are very different. A pill cam will see more of your digestive system than can be seen with normal scopes.

Are you getting much help with symptom management? There are all sorts of painkillers and anti-diarrhoea medications that you should be able to try without a diagnosis.

Finding the right doctor(s) is key. If you can, see ones from different fields and with different expertise (surgeons, gynaecologists, gastroenterologists, and any other field that covers your symptoms) so you get different perceptions of your situation. But mostly you need a doctor who will keep trying to help you regardless of test results. You should be getting help with symptom control. Many doctors like to have a diagnosis before they try much treatment, and of course a diagnosis makes it much easier to judge which treatments are suitable, but sometimes waiting for a diagnosis before trying treatment just isn't realistic. You should have anti-diarrhoea medications and painkillers.

 

[UnXmas]

Sorry, I'm not sure if I understood from your post - you said you've been pain free since the surgery in 2013, but you had pain from eating up until a month and a half ago??

 

[Sharon_Lynn]

Thanks for the advise guys!

I had a stool test, but the lab lost my sample... So I have to do yet another one, fun times. He wants to do another small bowel series with the barium to see if there are any changes from last time. He put me on Flagyl and Lomotil since I am still having frequent bowel movements. I did ask him to do the pill cam, but since I am laid off at the moment the cost is too much for me. He said it may come to that, but that he wants to do this first. I told him about the twisting last time when they put the paddle on my stomach at that one spot. SO I think that may be why. He did look alarmed when I told him about the bowel movements and he said it definitely was not normal.

I looked back and it has been since 201l that I have been having issues with my stomach and no resolve. I cannot imagine this being the rest of my life, its so awful.

 

[Sharon_Lynn]

Sorry, I'm not sure if I understood from your post - you said you've been pain free since the surgery in 2013, but you had pain from eating up until a month and a half ago??

Yes and no... I have had bouts with bathroom issues, but not the intense oh my God want to keel over pain since the surgery. It would be uncomfortable, but nothing that I would need to take anything stronger than Naproxen; which is how I gauge when its really bad or not. The only symptoms I have had in the last 2 years is the urge to go to the bathroom and going 10 plus times per day. The pain from that was only crampy like when you have diarrhea.

The intense pain I am talking about is only in 2 spots on my abdomen, next to my gallbladder and near my bellybutton (think location of ileum and appendix). That pain is God awful.

 

[Sharon_Lynn]

I'm sorry you're having such a difficult time getting a diagnosis. IBS is a diagnosis of exclusion, so when someone has digestive symptoms in the absence of positive test findings, that's diagnosis doctors give, and personally I think all sorts of problems get (mis)diagnosed as IBS. I dont think IBS has to have "pain all over", just digestive symptoms and negative tests, but also there are certain digestive symptoms which, if present, mean a diagnosis of IBS can't be made. These symptoms include passing blood, fevers, diarrhoea during the night and unintentional weight loss.

Is there anything in particular that makes you believe you have Crohn's? There are a huge number of medical conditions that can cause digestive symptoms. A negative colonoscopy and endoscopy make Crohn's unlikely. The pain is in spots where the scopes cannot get to all the way and I've had tests to rule out gallbladder etc. Also, the sheer amount of times I have to go to the bathroom, the have to go right now urges. Plus, the intense pain that requires the uses of anti-spasmodics and painkillers.

I would not ignore other possibilities such as gynaecological conditions. They can cause abdominal pain. The surgeries you've had could also be a possible cause of your pain in some way. Neurological and rheumatological conditions can also affect the digestive system. There are many possibilities, so if they can't find a cause when testing your digestive system, there must be a cause somewhere else.I have many issues from arthritis to diabetes, so so many things are coming into play which I believe is making the diagnosis harder. I'm literally in tears sometimes because I feel as though no one understands. Its like my body is attacking me and yet no one can find what is wrong.

My doctors said a pill cam is unlikely to find abnormalities that other tests have not picked up on - but that was in very different circumstances. I was already diagnosed and had had an endoscopy and small bowel MRI (and I no longer have a large intestine). My doctors wanted to do the pill cam to check they hadn't missed anything, but since they themselves said it probably wouldn't add to the information from the endoscopy and MRI, I decided it wasn't worth it in my case. I think you'd have to ask your doctors whether it would be useful for you, as your circumstances are very different. A pill cam will see more of your digestive system than can be seen with normal scopes.

Are you getting much help with symptom management? There are all sorts of painkillers and anti-diarrhoea medications that you should be able to try without a diagnosis. I have tried pretty much everything... Immodium, aleve, Tylenol and nothing OTC seems to help it.

Finding the right doctor(s) is key. If you can, see ones from different fields and with different expertise (surgeons, gynaecologists, gastroenterologists, and any other field that covers your symptoms) so you get different perceptions of your situation. But mostly you need a doctor who will keep trying to help you regardless of test results. You should be getting help with symptom control. Many doctors like to have a diagnosis before they try much treatment, and of course a diagnosis makes it much easier to judge which treatments are suitable, but sometimes waiting for a diagnosis before trying treatment just isn't realistic. You should have anti-diarrhoea medications and painkillers. The Dr. put me on an anti-diarrheal medicine and a antibiotic. I try not to ask for any painkillers unless I am in such pain I am doubled over. I live in a high drug area and the first thing people think is that I am drug seeking. Which is a whole other kind of frustration.

Thank you for taking so much time

 

[UnXmas]

The pain is in spots where the scopes cannot get to all the way and I've had tests to rule out gallbladder etc. Also, the sheer amount of times I have to go to the bathroom, the have to go right now urges. Plus, the intense pain that requires the uses of anti-spasmodics and painkillers.

It can be very hard to locate a problem based on where you feel the pain. Pain can be "referred", which is where the pain is felt somewhere other than the cause of the pain is located. And with abdominal pain, there are a lot of organs very close together. Also, many, many medical conditions cause severe diarrhoea and pain. Which is why I asked if there is there any reason you suspect Crohn's as oppose to the huge number of other things that cause these symptoms; they're not specific to Crohn's. Even if the problem is located in the part of the intestine not seen with scopes, there are many things that can go wrong there besides Crohn's.

I fully understand and agree with you that your symptoms are too severe to be written off as Irritable Bowel Syndrome. However, Crohn's is very common, which may seem to mean that a person with diarrhoea and abdominal pain is more likely to have Crohn's than to have a rare condition causing the symptoms, but it also means that when you google your symptoms, Crohn's will keep coming up, and there will be many other conditions that you probably won't ever come across. In your case, with the negative scopes, I would keep an open mind about other causes.

 

[UnXmas]

I have tried pretty much everything... Immodium, aleve, Tylenol and nothing OTC seems to help it.

Have you tried co-phenotrope (brand name Lomotil)? Or codeine (addictive but with few side effects and is used to treat both pain and diarrhoea)?

 

[Sharon_Lynn]

Have you tried co-phenotrope (brand name Lomotil)? Or codeine (addictive but with few side effects and is used to treat both pain and diarrhoea)?

Yes, the Doc prescribed the Lomotil yesterday and I have a couple of Hydrocodone pills, which I use very, very sparingly.

 

[Sharon_Lynn]

It can be very hard to locate a problem based on where you feel the pain. Pain can be "referred", which is where the pain is felt somewhere other than the cause of the pain is located. And with abdominal pain, there are a lot of organs very close together. Also, many, many medical conditions cause severe diarrhoea and pain. Which is why I asked if there is there any reason you suspect Crohn's as oppose to the huge number of other things that cause these symptoms; they're not specific to Crohn's. Even if the problem is located in the part of the intestine not seen with scopes, there are many things that can go wrong there besides Crohn's.

I fully understand and agree with you that your symptoms are too severe to be written off as Irritable Bowel Syndrome. However, Crohn's is very common, which may seem to mean that a person with diarrhoea and abdominal pain is more likely to have Crohn's than to have a rare condition causing the symptoms, but it also means that when you google your symptoms, Crohn's will keep coming up, and there will be many other conditions that you probably won't ever come across. In your case, with the negative scopes, I would keep an open mind about other causes.

Absolutely understand! I am so glad I found this board again because you guys do understand exactly what I am saying.

Its so frustrating because the Dr.s say "Oh well all the tests came back fine there is nothing wrong." Meanwhile, you are sitting there in agony saying "No, it isn't" and they look at you as though you need to see a shrink or you are a hypochondriac.

I even said to one Dr. "I'm in pain and I don't feel good every single day of my life. I even went as far as to permanently sterilize myself (hysterectomy) to get out of this pain. If there is nothing wrong then why on earth would I even have to go to those lengths??" The Dr. just said "You're right, but I don't know what to do for you."

Its depressing feeling this way and some days so awful that I cannot even get off the couch. I'm so tired and I am a single Mom to a 6 yr old little boy. He wants to play and ride his bike, but I can't go with him. People look at me and say "You always don't feel good." and I've had people talk about me behind my back calling me lazy (which I am far from). It sucks and its taking its toll, which doesn't help matters much.