My Story: Please Help!

[dcbt]

All of my life I have had stomach issues and was diagnosed about 10 years ago with IBS. I was able to tolerate it and had some problems (bloating, constipation, cramping that was very painful), but was able to manage it fairly well. I eat pretty healthily and love everything about food.

Most recently, in the last month (3.5 weeks) I've been having horrible diarrhea, with some right lower quadrant pain, and loss of appetite which is very unlike me. This started the week of January 20 (give or take a day). I had to travel for work over the weekend and ended up in the ER on January 26 and was put on flagyl and cipro.

Once I got home, my primary care physician also put me on Cipro. I started feeling better and then had more symptoms diarrhea, loss of appetite and overall tiredness come back last week. I'm finally starting to feel "normal" again. After I was admitted to the ER, my PCP got labs done and my blood work came back normal, and stool samples did aside from a moderate level of white blood cells found in stools.

I was finally referred to a GI since my primary care physician wasn't sure and thought my IBS could either have been misdiagnosed and I do have IBD and I needed further testing. Today I went to the GI and needless to say, I left feeling like I was being dramatic and it could have been a simple stomach bug or infection since my white blood cells were elevated. I didn't think this was the case since I have been off of antibiotics for over 2 weeks and still presented with symptoms and given my previous history, I am fairly confident this wasn't just a stomach bug. The GI saw my apprehension in her diagnosis and said I could come back in 6 weeks given my history of IBS for an EGD and colonoscopy. Part of me doesn't want an unnecessary procedure but the other part feels like something isn't right, esp. since I've been having issues for over 10 years.

Am I being too cautious or should I get another opinion and try and get a colonoscopy? Right now, I'm scheduled for April 2 but I can cancel it in case no other symptoms present since my GI said it would be pointless then. I don't want an unnecessary procedure but I also want answers and peace of mind.

Thoughts?

 

[DJBHeat]

I'd get the colonoscopy as it can provide a much better view of whats going on. Peace of mind is priceless! Best of luck

 

[dcbt]

Thanks! I made an appointment with another doctor to see if that also eases my mind. I was hoping for more advice and next steps as opposed to brushing it off as an infection. I'm hoping this new doctor (one my primary care physician recommended) is better. It's been taking a bit of time trying to schedule!

 

[fffaboveallelse]

I agree, get a Colonoscopy! That will give the doctors more information than you can imagine. Good luck!

 

[BuzzyBee]

Here's why, in your shoes, I would grasp at the offer of an EGD and colonoscopy. Like you, for years I was having those episodes that were "diagnosed" [intentional quotes] as "IBS". I was having other apparently unconnected episodes in the LR quadrant which GPs attributed to "grumbling appendix". Living as I was in regional New South Wales for 12 years, I had no GP of my own - you practically have to be born there to achieve that. So I would go from pillar to post, told to eat low-fibre, low-fat, low-carb, white meat, peppermint oil, painkillers...all the things you know about yourself. Never a referral to a GE, though, and never an episode that landed me in hospital.

OK, roll forward to 2010, when I returned to my native NZ, by then well ensconced in this malnutritive diet and losing a lot of weight. A few months later I had an episode so bad that I was admitted to hospital for suspected appendicitis. It wasn't; but there followed a year of GE and surgical appointments, CT scans, endoscopies and enterography to establish what was going on and, finally, a diagnosis of Crohns that escalated from Moderate to Severe by the end of 2012.

The first points that were pushed at me by the GE team is that there are no such diseases as "Irritable Bowel Syndrome" and "grumbling appendix". IBS, I was told, is a description of a group of symptoms that appear from a large variety of sources: food intolerances, chronic infection, incipient diabetes, gallbladder problems, cancers...and, of course, Crohn's Disease and ulcerative colitis. "Grumbling appendix" doesn't exist...you have appendicitis or you don't. If you have appendicitis, you should be hospitalised.

I'm saying that, if your GI dr is talking about IBS then she hasn't yet established what is going on in your gut. "IBS" symptoms on their own cannot project a diagnosis of their *cause*. The endoscopies are an essential step towards doing that, with the aim of diagnosing something that is treatable. You are NOT over-dramatising.

 

[dave13]

Do not cancel the colonoscopy,you are not being overcautious. We need to stay on top of things and diagnostics are a tool to use for that purpose.

I am happy you have a GI and not a general care doctor.I suggest talking about other tests such as a small bowel follow through,to see from the top down,so to speak.I had stricturing that led to a complete blockage,after my colonoscopy came back clear.Different tests for different sections of our GI tract.

Being proactive is a good thing.Damage can be happening that we don't know about when we ignore symptoms.Always share your concerns with your doctor,this is your body and being concerned is not being paranoid.Being concerned,vigilant and proactive is responsible.

I always urge people to be assertive,not aggressive when it comes to our health care.To be persistent as well as patient when seeking answers.Our doctors may be busy,we are not their only patients and hurry up and wait is something we may have to do.Infuriating as that may be at times.:ybatty:

Seeking answers is not being bothersome.My GI and colorectal surgeon appreciate my proactive approach.They now ask me,with a chuckle,if I have my notebook with me when I go for appointments.I write down questions between appointments so I don't forget them.

This is my rambling way of agreeing with the colonoscopy. I would bring up other tests with your GI. Ask why,as well as why not,if they are or are not recommended.You had the fecal calprotectin test? http://www.crohnsforum.com/wiki/Fecal-Calprotectin

Let us know how it goes.

 

[SJ!]

Hi dcbt,

Fecal calprotectin is a very useful test. And yes, I wouldn't cancel the colonoscopy, if you're on the forum then you're concerned about it.

Hope it works out well

 

[Ali29]

I agree, have the tests and see if they can find what is causing your problems. You are better off catching something early than playing catch up with desruction/disease spreading if indeed that it what it is.

Good luck!

 

[dcbt]

Thanks again for the supportive advice. I went back to another GI today and felt much better with her. I appreciated her listening to my story and not making me feel like I was over dramatic!

My colonoscopy is on March 16 and she's also going to review my blood work cause it could be thyroid issues she mentioned. She did say that I shouldn't have white blood cells in my stool samples so it concerned her a bit.

I've been feeling pretty good the past few weeks with some bloating and cramping lately. Tonight I'm laid out on the couch with horrible cramping and not sure what caused it.

I appreciate the follow-up from everyone and hoping for some closure soon. If the colonoscopy comes back clean, my doctor mentioned the infection again. I could also get put on some meds if it's IBS.

 

[David]

I'm glad to hear you're getting the colonoscopy. Please report back as soon as you know more. We're here for you.

 

[dcbt]

starting my prep on saturday evening and doing the suprep. not looking forward to it but hoping for some answers. does anyone have any other tips for the prep or questions I should ask the doctor if tests come back inconclusive (already fearing that nothing will come of it)

 

[dcbt]

in process of prepping and already disliking it. it's going to be a long 1.5 days - my colonoscopy isn't until 1:45 on Monday afternoon. I wish I had scheduled it earlier!

 

[David]

How did your colonoscopy go dcbt? Well, I hope?