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lindsaydij

lindsaydij

Joined
Sep 22, 2015
Messages
12
Hi everyone. I’m a 24-year old female from Vancouver who has been plagued with digestive issues and pains since I was 19. For the past 4.5 years, I swing from having a few weeks of being okay (intermittent pain) to having many weeks/months of extreme pain (missing work, unable to leave bed). The digestive pain and issues have forced me to quit playing university volleyball and give up my dream career of playing pro; have had to return from travel in Europe due to getting hit with a massive, out-of-the-blue flare-up; and now I’m very close to losing my current job. I’m really at the end of my rope and need some insights from the Crohn’s community as I’m feeling very hopeless. Here’s what my experience looks like:

Symptoms:
- persistent diarrhea and loose stools (often accompanied by mucus or blood)
- excruciating abdominal/intestinal pain (stabbing, twisting, pinching, dull pain, you name it)
- sweats + chills
- extreme fatigue
- complete loss of appetite
- weight loss (I’m 6’3 and weigh 135 pounds. I weighed 155 pounds one month ago.)
- nausea and vomiting
- rectal bleeding
- currently experiencing my 4th episode in 2015 of non-stop, relentless, excruciating pain that’s lasted at least a month long (also had episodes in Jan-Feb, April-June, July, Aug 22-present)
- a hell of a lot of tears

I have had various tests in the past to search for WHAT is causing all of my problems:
- A million blood, urine, stool, and h.pylori breath tests
- 10 ultrasounds (abdominal, pelvic, and scheduled for a small bowel ultrasound)
- 4 regular X-Rays
- 1 CT Scan
- 1 colonoscopy in Jan 2012

And to my absolute horror and surprise, everything has come back fine. No signs of inflammation, anemia, colitis, etc. The doctors keep assuring me everything looks “fine and healthy,” which only makes my frustration increase tenfold.

I will acknowledge that I haven’t had certain symptoms of Crohn’s, such as mouth sores or joint pains. However, I have NOT had an MRI, barium X-Ray, endoscopy, or camera pill and thus my stomach and small bowel have not been looked at internally. My brother is diagnosed with colitis, which I know raises my chances genetically of having an auto-immune digestive disorder. (I think - correct me if I’m wrong.)

The real question is: Has anyone else had “clean” blood tests, ultrasounds, or even a colonoscopy, and still been diagnosed in the end with Crohn’s? Is it possible to not have some of the common symptoms, like mouth sores, and still have a small bowel plagued with Crohn’s? Did test results ever seem like they were “normal” until the doctors observed a very specific area of your digestive tract? If this was your experience, how did you get diagnosed in the end? What tests were needed?

I’m open to any and all feedback. I’m definitely not trying to say I have Crohn’s; I’m just hoping to weigh my experience versus other’s and see if there’s any similarities at hand. Please do share your stories of how you were diagnosed and if you think there’s any chance that what I’m experiencing could be a "well-hidden" case of Crohn’s.
 
In 1989, I had surgeries for hemorrhoids and then a fistula. I had trouble healing up from these surgeries. The next year, I visited a surgeon. I don't remember any tests he did but he determined I had Crohn's. I hope you get answers soon.
 
I recommend you get another colonoscopy done 3 years is too long ago... plus I'd change doctors or get another opinion.
 
I don't know if this will help but anything is possible. I've had Crohn's for 18 years. My daughter started coming down with the same pain and symptoms that I had when the disease first started taking hold. I called my GI Dr and he ran the blood work and did some testing but couldn't find any signs of the disease. He scheduled her for a scan of her gallbladder and it turned out that that was the issue causing her all the pain, diarrhea and nausea. She had it removed a few months ago and has been doing wonderful. Have you ever had your gallbladder tested?
 
All I can say is everything you are describing (pain/symptoms) happened to me in 2 days. I did end up in the emergency room after trying to "fight it/ignore it" for 2 weeks. I am 6'1" and went from 190lbs to 155lbs with in that 2 weeks. I spent most of my days laying in the bath because that was the only thing I could do to get some-what comfortable. The only difference was when I went to the toilet (pure liquid BM) the water would turn completely red, looked like a gallon of blood was dumped in there. I was in the hospital for over a month and on a central line so that nothing entered my mouth, not even ice chips. They ended up taking out my large intestine (that was 1996) and to this day I still haven't been told what I have for sure and I wish I could turn back the clock and not have done surgery. My best advice would be try to calm down and relax/no stress however you can. I know how hard this sounds :( When I'm in pain I take hycosimine -sp? (smooth muscle relaxer) and flexeral -sp? (muscle relaxer). I also go straight to a liquid diet. Chicken broth, jello, gatorade ect. However your sweating, chills, and nausea makes me think you have some infection or possible abscess? I am not a professional by any means but those are the ones that would concern me. You might have to do more tests. I've had 3 MRI's recently and it wasn't until the 3rd one when they found a fistula tract. Don't make a big decision based on what just one doctor says, see 3 if you can and travel to the next town if possible. P.S. if you decide to cross the border for diagnosis, skip right over Bellingham and go to the UW or Virginia Mason in Seattle.
 
What testing has been done since the recent weigh loss?

Can you compare recent blood test against blood test from a couple of years ago. Are there any changes to the haemoglobin levels etc.

Have you had a faecal calprotectin done?

Weight loss and bleeding are not symptoms of IBS.

My daughter was dx with Crohn's Disease at 16 years. She has never had any bowel symptoms. Prior to the last 6 months - 9 months prior to dx, she had no symptoms other than periods of severe pain, low iron, borderline anemia.
 
Sure looks like Crohn's symptoms, definitely need to find a Crohn's specialist. The camera pill should be done as well, my Crohn's when diagnosed was very mobile much to my GIs surprise, it was up very high and not found until the PillCam. Since it has settled lower and I have recently had a resection of the Ileum due to a sticture. Vomiting and weight loss suggests obstruction as does the diarrhea. (imagine having to push all your food through a pinhole sized opening) Do your pains come in waves like contractions? I was able to actually time them as my body tried to push through the obstruction. Sometimes I was successful, sometimes relief only came via vomiting.
 
take photos of your bloody and mucus stools to show the doctor. These symptoms can be strong indicator of possible colitis (just like your brother) and should be investigated asap. No doctor should ignore that. as someonelse mentionned a colonospcopy 3 years ago is too far away.

fecal calprotectine probably was not available back then. Its a new and simple stool test, pretty sensitive.

Honestly with the symptoms you are having right now, i would go to the Emergency of another hospital if your current doctor (GI?) cannot see you very fast for at least a Fecal calprotectine test or colonoscopy. Blood test should again be done on you. yes they can come clear very often in Ulcerative colitis/CD (my case). But with the severity of your current episode, it could be different and maybe something could show up. so get them again.
extra-intestinal symptoms (mouth ulcers, joint pain, etc.) are present in a minority of patients. and yes family history also increase risk of IBD in the family. It is one of the first question GI asked me. ''Anyone in your family with IBD?''
 
kjhuds said:
I don't know if this will help but anything is possible. I've had Crohn's for 18 years. My daughter started coming down with the same pain and symptoms that I had when the disease first started taking hold. I called my GI Dr and he ran the blood work and did some testing but couldn't find any signs of the disease. He scheduled her for a scan of her gallbladder and it turned out that that was the issue causing her all the pain, diarrhea and nausea. She had it removed a few months ago and has been doing wonderful. Have you ever had your gallbladder tested?
Click to expand...

Thank you so much for your insights and feedback - it definitely helps! I've had my gallbladder checked numerous times via ultrasound and once during a CT, but never anything further such as a HIDA scan. Perhaps this is something I should push for to know if things are working well and rule out (or in) possible gallbladder issues. Thanks again :)
 
My daughter had to have the HIDA scan to finally see her gallbladder issues. I hope you finally find some answers!
 
Ttoz said:
All I can say is everything you are describing (pain/symptoms) happened to me in 2 days. I did end up in the emergency room after trying to "fight it/ignore it" for 2 weeks. I am 6'1" and went from 190lbs to 155lbs with in that 2 weeks. I spent most of my days laying in the bath because that was the only thing I could do to get some-what comfortable. The only difference was when I went to the toilet (pure liquid BM) the water would turn completely red, looked like a gallon of blood was dumped in there. I was in the hospital for over a month and on a central line so that nothing entered my mouth, not even ice chips. They ended up taking out my large intestine (that was 1996) and to this day I still haven't been told what I have for sure and I wish I could turn back the clock and not have done surgery. My best advice would be try to calm down and relax/no stress however you can. I know how hard this sounds :( When I'm in pain I take hycosimine -sp? (smooth muscle relaxer) and flexeral -sp? (muscle relaxer). I also go straight to a liquid diet. Chicken broth, jello, gatorade ect. However your sweating, chills, and nausea makes me think you have some infection or possible abscess? I am not a professional by any means but those are the ones that would concern me. You might have to do more tests. I've had 3 MRI's recently and it wasn't until the 3rd one when they found a fistula tract. Don't make a big decision based on what just one doctor says, see 3 if you can and travel to the next town if possible. P.S. if you decide to cross the border for diagnosis, skip right over Bellingham and go to the UW or Virginia Mason in Seattle.
Click to expand...

Oh wow! You've been through such an ordeal and how terrifying to pass that much blood at once. My next course of action is to seek help in the States if my Canadian doctors continue to ignore my desperate pleas for further tests or scopes. I'll keep the names of UW and Virginia Mason in mind if I need it in the future. Thank you so much for your help - the fact that it took 3 MRI tries for you gives me hope that perhaps my docs are missing something and need to keep looking. Thanks again :)
 
Catherine said:
What testing has been done since the recent weigh loss?

Can you compare recent blood test against blood test from a couple of years ago. Are there any changes to the haemoglobin levels etc.

Have you had a faecal calprotectin done?

Weight loss and bleeding are not symptoms of IBS.

My daughter was dx with Crohn's Disease at 16 years. She has never had any bowel symptoms. Prior to the last 6 months - 9 months prior to dx, she had no symptoms other than periods of severe pain, low iron, borderline anemia.
Click to expand...

Hi Catherine,

It's great to hear from you. Since the weight loss I have gone in for blood work once (a lot of tests for my liver function, if I remember correctly), did another h.pylori breath test, and had an abdominal ultrasound. All of those things came back normally. Yesterday at my gastro I begged and pleaded in complete tears for him to look internally; an endoscopy, a camera, anything, and instead he ordered me a small bowel ultrasound, which no doubt will come back as all my other ultrasounds have.

I'm honestly not sure if I've had a faecal calprotectin test or not. I've done lots of stool samples in the past but I don't distinctly remember the name of that test coming up before. It is definitely something I will inquire about at my next GP visit (on Oct 27).

Thank you for your very helpful insights. I sincerely appreciate your efforts to help.
 
NJZen said:
Sure looks like Crohn's symptoms, definitely need to find a Crohn's specialist. The camera pill should be done as well, my Crohn's when diagnosed was very mobile much to my GIs surprise, it was up very high and not found until the PillCam. Since it has settled lower and I have recently had a resection of the Ileum due to a sticture. Vomiting and weight loss suggests obstruction as does the diarrhea. (imagine having to push all your food through a pinhole sized opening) Do your pains come in waves like contractions? I was able to actually time them as my body tried to push through the obstruction. Sometimes I was successful, sometimes relief only came via vomiting.
Click to expand...

I agree - I think I really need to see a new gastroenterologist who knows much more about Crohn's than my current one does. (Mine seems to be REALLY specialized in the liver and hepatitis.) Thanks for letting me know about the PillCam - that really makes me want to push even MORE to have one done. Just to look at every square inch from top to bottom to see what's going on in there.

And yes, that sounds exactly right. At times it almost feels like someone's pinching my intestines and things are REALLY painfully trying to get through. Very interesting to hear you've experienced this as well - although I'm sorry to hear it as I know how awfully painful it is. I'll definitely note to stress that as a symptom in my coming appointments.

Thank you SO much for your help. This has really been a big help and support.
 
This is an interesting thread to me. I have some pretty black and white symptoms of IBD, however, all my bloods came back normal, and stool tests. However, they haven't done any scopes on me yet, so they haven't seen any inflammation, as of yet.
However, I do know of people that have had completely normal tests and had Crohn's/UC.
 
Here is my story, if it helps.

I had similar symptoms, but my colonscopy showed nonspecific inflammation. My doctor strongly suspected Crohn's due to family history, so he did blood work to confirm. All of my blood work came back clean - CRP, sed rate, and antibodies particular to Crohn's. So he did a CT, which showed thickening of the wall of my ileum (consistent with Crohn's), and a fecal calprotection, which was mildly elevated.

Officially, biopsy showing granuloma is the only way to diagnose Crohn's. My doctor said he has seen a LOT of patients who can't be officially diagnosed, but when treated, they respond beautifully. So he is treating me for Crohn's, and my response has confirmed the disease.

Basically, try to get your doctor to prescribe you a steroid. If you respond to the steroid, and then get worse upon stopping, you almost certainly have IBD. If it were an infection, you would get WORSE on steroids, because they suppress the immune system. (My doctor also tried antibiotics first to make sure it wasn't an infection, but I responded very poorly, again confirming his suspicions.)

Find a doctor who will treat your symptoms and care about your quality of life and not just a scientific disease criteria! I am so thankful that my doctor actually wants me to FEEL better.
 
See if you can get a referral to Dr Brian Bressler in Vancouver for a consult. He's a brilliant GI specialist and my specialist in Victoria looks to him if he needs a second opinion. If it's Crohns related he would be able to figure it out. I hope you get your answers soon! Until then, try to manage your stress as best you can. Good stress mgmt does more for me than medication (but I take that too). Some yoga, deep breathing, meditation, laughing are all important tools to help you through this.

It took 8 months of weekly ER visits before I got my diagnosis and my mother cried herself to sleep every night for fear of me dying. And it took another few years before I found my amazing GI specialist in Victoria.
 
kellehbeans said:
This is an interesting thread to me. I have some pretty black and white symptoms of IBD, however, all my bloods came back normal, and stool tests. However, they haven't done any scopes on me yet, so they haven't seen any inflammation, as of yet.
However, I do know of people that have had completely normal tests and had Crohn's/UC.
Click to expand...

Oh no! How very frustrating - I've been there many times and experienced the sheer disappointment and helplessness of hearing that nothing's wrong. (Although YOU know something is definitely wrong.) I hope you get some scopes and some answers soon as well.
 
raspberryapple said:
Here is my story, if it helps.

I had similar symptoms, but my colonscopy showed nonspecific inflammation. My doctor strongly suspected Crohn's due to family history, so he did blood work to confirm. All of my blood work came back clean - CRP, sed rate, and antibodies particular to Crohn's. So he did a CT, which showed thickening of the wall of my ileum (consistent with Crohn's), and a fecal calprotection, which was mildly elevated.

Officially, biopsy showing granuloma is the only way to diagnose Crohn's. My doctor said he has seen a LOT of patients who can't be officially diagnosed, but when treated, they respond beautifully. So he is treating me for Crohn's, and my response has confirmed the disease.

Basically, try to get your doctor to prescribe you a steroid. If you respond to the steroid, and then get worse upon stopping, you almost certainly have IBD. If it were an infection, you would get WORSE on steroids, because they suppress the immune system. (My doctor also tried antibiotics first to make sure it wasn't an infection, but I responded very poorly, again confirming his suspicions.)

Find a doctor who will treat your symptoms and care about your quality of life and not just a scientific disease criteria! I am so thankful that my doctor actually wants me to FEEL better.
Click to expand...

Thank you so much for your reply! This is a very insightful response and I will definitely approach the idea of going on a steroid with my doctor at my next appointment. Very smart idea considering getting properly tested can honestly take months/years to wait around for.

And very good point about finding the right doctors. Sometimes they're SO results-focused that they think if the results don't show anything then there must not be something. Argg...

Thanks again for your great help :)
 
saucytart said:
See if you can get a referral to Dr Brian Bressler in Vancouver for a consult. He's a brilliant GI specialist and my specialist in Victoria looks to him if he needs a second opinion. If it's Crohns related he would be able to figure it out. I hope you get your answers soon! Until then, try to manage your stress as best you can. Good stress mgmt does more for me than medication (but I take that too). Some yoga, deep breathing, meditation, laughing are all important tools to help you through this.

It took 8 months of weekly ER visits before I got my diagnosis and my mother cried herself to sleep every night for fear of me dying. And it took another few years before I found my amazing GI specialist in Victoria.
Click to expand...

Hi saucytart (love the name),
That's so coincidental - I was actually recommended Dr. Brian Bressler by a radiologist who viewed my last ultrasound images. He said that Dr. Bressler is the best of the best in the Van area and I'm definitely going to ask my family doctor to refer me to him at my next appt. Which means the wait will most likely be long but worth it!

Honesty it is so frustrating. I'm 24 and still live at home with my mom because I literally still need to be "cared" for in the traditional sense - have someone help me out of bed, take me to the ER, make me soup when I can't eat solids, etc. Which is of course AWFUL for my mom as well as she too feels like some days I could just die of pain. Hopefully I can get in with a good gastro (AKA Bressler) who actually cares how much this is ruining my life.

Thanks for your feedback. I really appreciate your help and knowing other people have similar stories to mine.
 
Hate to say it but is very hard to miss Crohn's on a colonoscopy. I think you need a very good and competent GI Doctor and have him start from scratch.
 
The problem with CD, every test you have can be negative and you can still have CD.
I learned that when I went to the IBD clinic at UCLA.

Mine shows on a Small bowel series and a CT scan with contrast. I drank 3 bottles of contrast and had Iodine. That was not a good time.

You are your best and only advocate- if you are still feeling sick, keep fighting for a diagnosis! And in this respect I know exactly what your going through!


I hope you feel better soon!


Lauren
 

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