Not diagnosed, impatiently waiting for a doctor to take me seriously

[Ashjenn26]

Hello, I am new here. I am 26 years old and I am hoping to get help finding answers. I am under the assumption that I have some form of IBD. Growing up I have had random bouts of sever stomach pains and urgent bouts of diarrhea. My mom used to joke about how I needed to see and use every public restroom wherever we went. When I was younger there was never any severity to my condition. Symptoms would relieve themselves as quick as they came. This past year everything has changed
Since June of 2014 I have been experiencing loose stools at a minimum of three times per day on a normal day and up to 15-20 times on a bad day accompanied with belly pain and fatigue. I often have frequent urgent bowel movements. They give no notice, I suddenly get extreme stomach cramping with a very urgent need to use the washroom, if I am not near a washroom there is no way my body can hold it. Sometimes food, any food can trigger it. Occasionally if it's during a flare up something a simple as a glass of water will run directly through me in a matter of minutes. I have been to my doctor whom referred me to a GI . The wait list was originally 18-24 months. After blood work, stool samples, and a 30 lb weight loss in a 6 week time frame my position on the wait list was changed to moderate- urgent and now the wait is 10 months. In June I was camping and I experienced a brutal flare up , I used the washroom 13 times in one hour and the bowel movements were accompanied with blood, I had not ever had blood previously and hadn't had blood since, until this past Wednesday . I had dinner, I started to get the roaring cramping gurgling belly , which was followed by diarrheah and blood. I then got nauseous and vomited. I could barely sleep because of the pain and the next morning I went to the ER where I had 3 more urgent washroom breaks. They did blood work, an ECG , urine samples and went over my history. The doctor then barley took 2 minutes to tell me this is unrelated to my problem over the past year and told me blood in the stool is nothing to worry about when you have frequent diarrheah and he told me to take some pepto because I have to much stomach acid. He then had me swallow la lidocaine liquid and did not believe e me when I told home the pains were still there. I left the ER bawling. I know what I experienced had everything to do with the past year, I know I don't suffer from acid reflux or heart burn. I know I can't wait 10 months for a GI. I am wondering if any of you have any symptoms such as these and if the could possibly be crohns or UC. Any input is greatly appreciated. My mentality and quality of life is starting to decline as I am afraid to go anywhere , I won't go on road trips or camping trips anymore as I have been in the situation of being in the middle of nowhere on the highway with the suddenly urgent need fora bowel movement. My friends are starting to question why I don't do anything anymore. And I am terrified to experience the brutal stomach pains or bowle movement when a washroom is not near.

 

[Kero]

Many ((((hugs)))) headed your way!
Gotta love Alberta healthcare huh? I have been battling for over 2 years to get a diagnosis. I completely understand! My GI appointment took forever to get, and been seeing her for over a year, and I have seen her a total of 5 times. Often waiting anywhere from 4-6 months between appointments because of the way our stupid system works. I still don't have a diagnosis either. Anyway, enough venting, lol

Is there a hospital at the U of C? Or any hospitals in Calgary that have a GI clinic in them? It took me going to the Royal Alex here in Edmonton to finally get fast tracked to get into a GI. The ER doc was able to confer with the resident GI and get his opinion, and I was in to see him the next week ( The resident GI). He was able to point me in the right direction to get help faster.

Call your GI office once you have your appointment. Be asked to be put on a cancellation list. You should be able to get in a little sooner.

The good thing is you found us here. There are many on this site that have experienced what we are going through and there is a wealth of info here. Just remember, there is no such this as TMI questions here

Here's to hoping you can get answers sooner than later

 

[Ashjenn26]

I have tried to do research about GI clinics and such around Calgary. I haven't heard anything regarding U of C and I haven't checked to see which hospitals have GI clinics. When I went to the ER I went to our newest hospital of which I have only heard wicked reviews from anyone that has been there for any problems . I went and sat for 6 hours before I saw a doctor . My reviews were definitely not the same as everyone else. I know ER's are not generally good with abdomen pin as the abdomen is an area with so many organs of which ER doctors do not specialize in. But I felt like such an inconvenience to them. I did call my GP to let her know about my ER visit. She said she would update my referral and she asked me to follow the low FODMAP diet, I went and bought the book and I will utilize the long weekend to creat a meal plan, and hopefully this diet can give me some alleviation of my symptoms.

 

[Lady Organic]

hi, im sorry for your struggles, a waiting list of 10 months with those symptoms? I just cant believe it :-( thats really sad and unacceptable.

Do you have the result of the stool test you did? what was is? a Fecal Calprotectine? Go pick up the result. take picture of the blood in your stools.

which Hospital did you go? Honestly, I would return to another ER hospital, where there is an IBD center. a university Hospital such as :
http://calgarygi.com/index.php?mode=faculty&fid=FMC
in such places, you normally have student gastroenterologist who can come and see patients at the Emergency for evaluations. Push for that. I would not leave without seeing at least an intern resident GI.

 

[Ashjenn26]

The doctors never give the results of any blood or stool tests. Can I ask for these reports? I have not seen the results of my still test and I am unsure what was found or what they tested for. I think if my symptoms flare up badly again I will try to go to the foothills now that o know the University students are there. They may be young but they are new and want to study illnesses. I feel like many older doctors have shades on when it comes to certain symptoms. Thank you so much for your input

 

[Kero]

Ashjenn, you are certainly entitled to know the results of the tests. I don't get results here unless I ask for them

 

[Lady Organic]

yeah you simply have to go to the hospital where the test were taken and go to the Archive department with ID card. it should work the same in Calgary. we have the right to full access to our files and reports.

 

[Ashjenn26]

After having this issue, and years of having menstral issues , I had not realized they could be linked. I just had my first appointment with a Gyno who has diagnosed me with endometriosis. She advised there is a chance it could have spread inside my
Bowels. She also stated my abdominal nerves are out of whack and when the endometriosis is causing pain, it makes my nerves flare up throughout my abdomen and makes the pain felt elsewhere. She said that this could very well still be a GI issue but there is the chance that the endometriosis is causing this bowel reaction. I am scheduled for surgery on November 16th and this will confirm the severity of the endometriosis. She said if it is found in my colon, all she has to do I make one phone call to the GI and there will be no more wait list and I will be seen right away. I am just wondering if there are any ladies here that have endometriosis and IBD? I am so bloody happy with this doctor. Just as I was losing faith, this doctor has confirmed I am not crazy and that I do have real issues.

 

[cparker824]

I'm 24 years old and have the same problem. I've been dealing with some IBS type symptoms for the past 3-4 years and for the past year they have become more severe. I went to the ER for the first time for severe stomach pain almost exactly a year ago and the ER doc ordered a CT scan showing inflammation in my colon. He said it was likely Crohn's and referred me to GI. A month later I had a colonoscopy and my GI doc said he didn't find anything. He acted like the fact that he didn't find anything meant there was nothing wrong. I persisted and had an endoscopy of my stomach and other tests done - still nothing. I became pregnant and went into remission for about 7 months so I stopped pursuing treatment. 2 months after giving birth to my son, last Saturday, I had the worst flare up I've had. Went to th ER with such severe stomach pain that I literally thought I was dying. My stomach was making the loudest rumbling & growling noises that you've ever heard! I was given 3 doses of Dilaudid through IV and after 4 hours finally had a watery bowel movement before the pain started the subside. I was given another CT scan that showed fluid and inflammation in the colon. Blood work showed elevated white blood count. ER doc said I definitely have some form of colitis. Over the next few days I continued to have watery stools and pass lots of blood. I have an appointment with my GI Doctor on Monday and I've requested that they get my results from the hospital before my appointment but I'm scared to death that they still won't take me seriously.

 

[ronroush7]

Sending you support. If you don't get satisfactory answers, keep pushing or get a second opinion.

 

[cparker824]

Thank you, Ron Roush! I had to go back to the ER again this evening because I was passing so much blood and in a lot of pain. The doctor on call was awesome. He reviewed my results from last Saturday and agreed that I have colitis. He also wasn't surprised at my experience with the GI Doctor. He said his wife has the same story - symptoms and scans say colitis but GI doctors can't find anything and biopsies are negative. He said he refers to it as "negative biopsy colitis." I'm still nervous about my appointment on Monday but it's surprising how much it can help to have a doctor say that they believe in your illness.

 

[ronroush7]

Welcome. Best to you

 

[Donnainvero]

Wow. I am so sorry you have been through all of that it's so hard to find a really good doctor all the best to you