Lots of Symptoms, No Answers!

[marie.trin.2]

Hi,

My name is Marie, I'm 25 years old and have been having a range of symptoms for about 3 years now.

It all started with the fact that I noticed that i needed the bathroom a lot more than the usual person. In the hour after I get up in the morning, I go 4 times. After breakfast it's usually another 2-3, after dinner twice and then two to three times more throughout the course of the day. I always feel a little bit nauseous. Once I eat something, I have to go. I also get this excruciating gnawing crampy pain in my upper abdomen, just below my chests. It gets so bad sometimes that I come out in sweats. Sometimes, if I'm having a particularly bad bathroom day I'll also come out in sweats. I'm exhausted all the time, it doesn't matter how much sleep I've had. Blood work in the past has said I'm slightly anaemic and have a magnesium deficiency. My stomach is always so noisey and embarrassing, especially after eating. I also get intense sharp pains all around my abdomen.

I had incredibly bad pain a couple of years ago and went to the hospital. I was dismissed as having IBS and given some tablets for that but they never helped. I was told I was just stressed but I'm not. Shortly after that I had a minor abdominal surgery for women's issues and was told I had scar tissue on my small bowel but that it didn't really mean anything. An ultrasound at the time also indicated an enlarged liver, this was also dismissed as meaning nothing.

This past winter my exhaustion got worse. I spontaneously started breaking out in fevers and I just feel crappy. I also have a really bad rash everywhere so I went to the doctor and had bloodwork done. This indicated that my CRP levels were high on two occasions stretching from September to January and I haven't had them repeated since. My doctor said it was normal enough and said not to worry.

In the past few weeks my tummy issues have only started getting worse. I feel ghastly all the time and am considering going to the doctor again to get some help. The only thing is, I'm afraid of getting fobbed off and being told that I have IBS or that it's normal what I'm going through.

I spent a lot of time researching my symptoms and feel like it might be Crohn's disease. What do you all think? I'm just wondering if it should have been noticeable during my women's surgery a few years ago if it is it. Also, I don't want to go to the doctor to be fobbed off again if it doesn't seem to be anything. I realise that none of you are healthcare professionals but feel like you might have been in my shoes and I'd love some advice about what I should do moving forward?

Kind Regards,

Marie.

 

[Kero]

Hi Marie! I know EXACTLY how you feel about getting passed off as IBS! My GI doc keeps saying IBS even though I have all the symptoms of Crohns. Hoping you get answers quickly. Best part of this board is that there are many people. There is always at least one person going through what you are going through, questions almost always get answers

 

[UnXmas]

I understand completely why you disagree with the IBS diagnosis. Your symptoms are clearly not normal, and you're the one who knows whether they could be due to stress or not. So many people come to this forum saying that their doctors have just dismissed them as having IBS, with the implication that it's due to an inability to manage stress; it's just a stupid diagnosis and no help to anyone.

That said, I don't think your symptoms sound like typical Crohn's. Of course there are many cases of Crohn's that aren't typical, but I think that because Crohn's is so common, when people search online for bowel problems, Crohn's comes up over and over again, while a great many other conditions never come up at all simply because they are too rare. Often search results make it look like it's a choice of either IBD or IBS, when in reality it's not like that at all (then again, I have another medical condition that's extremely rare, so maybe I see things differently).

I wouldn't worry too much about the abnormalities in your test results. I can't say that your scar tissue, enlarged liver, etc. are serious or not, but I do know I've had a huge number of abnormalities found through testing that have been of no significance at all, even though they get recorded in my medical records. When you have tests they record every abnormality, but abnormalities are not necessarily problems. If you're worried about the particular abnormalities in your test results though, it's perfectly acceptable for you to ask a second doctor about them should you wish to do so.

But I think the CRP levels are more likely to be of significance though, given the symptoms you're experiencing.

I have a few different medical conditions that have all been very difficult diagnoses, taking years to diagnose, and one is still undiagnosed. In situations like yours, I believe the most important thing you need to do is to find the right doctor. You need a doctor who takes you seriously, who will keep trying to find a diagnosis even if test results come back normal, and who will treat your symptoms even if there is no clear diagnosis. I don't think it's a good idea for you to rely on getting a diagnosis, because sometimes a diagnosis just isn't forthcoming, so don't put your life on hold in the hope of getting answers.

 

[David]

Welcome to the community. I'm so sorry to hear what you're going through

Based upon everything you've described, I'd request a colonoscopy.

All my best to you.

 

[D Bergy]

I equate bad fatigue with mycoplasma. Unfortunately, most doctors know little about it and rarely test for it.

I asked for a mycoplasma test from my Gastro doc. He just said "we don't test for that".

Some of those symptoms seem like a simple H-Pylori infection of the stomach. You could have a biopsy or one of the other tests, but they are not very accurate.

Good luck.

Dan

 

[24601]

I'm so sorry to hear that your doctors haven't been supportive about the issues you've been having. If it helps at all, please know that you are not alone in being treated like this - it's not something about you that is making them dismiss your suffering. The sad truth is that there are many doctors who will do this and it's a story we hear all too frequently on this forum. Please don't be afraid to go to see your doctor (or any doctor, perhaps a new one?) about this. Sometimes it takes several attempts to find the right doctor. As UnXmas said, when a diagnosis isn't easy it's even more important to have a doctor who listens to you, pays attention to the symptoms and provides supportive treatment even without a diagnosis.

While I don't know what your diagnosis should be, I do think it could be Crohn's (although it could also be something else!) and most importantly it should be investigated further.

I think you need a referral to a GI who can carry out proper testing - endoscopies, an MRI, depending on those results perhaps a pill cam and certainly a fecal calpro.

A fecal calprotectin test tells you about gut specific inflammation - whereas your elevated CRP results, though consistent with Crohn's could be due to inflammation elsewhere in the body or a different GI issue. Raised fecal calprotectin has a pretty high specificity for IBD, though not everyone with Crohn's will have elevated levels. Sometimes diagnosis is just plain tricky.

What is certain is that what you are experiencing is not normal. It is also not just IBS.

Frequent BMs, nausea, sweats, fatigue and abdo pain are all consistent with Crohn's but a GI can make a differential diagnosis. Since my only area of expertise is Crohn's I just don't have the knowledge to say what else might fit your symptoms.

As to your gyne surgery, did that pre date your GI issues? If it did, I would have thought that your doctors should have been considering adhesions being a factor in your GI symptoms, though I don't think this would account for them all - for example, adhesions (though very common) can in rare instances cause pain and obstructive symptoms so could be responsible for nausea, the frequent BMs and abdo pain. But I don't think they could cause fatigue or sweats. I'm not a doctor but I'm really just saying I don't get the impression that your doctor is being a good doctor either!

Another example of that is telling you that your elevated CRP is "normal enough". A normal CRP is normal. That's why they set the normal range. Once you have a diagnosis then a doctor might tolerate a raised crp, knowing what is causing it. But I don't think there is good reason to dismiss that result without explanation and in the presence of other symptoms.

Bottom line is, I think you need a new primary care doctor/GP and a referral to a GI to start with.

Best of luck and be sure to keep us updated!

 

[wild_one353]

In the meantime read breaking the vicious cycle. later on check out the link below. avoid refined sugar(sucrose) and lactose(milk sugar) and replace with cheese which has little to no lactose mozzeralla is very low in lactose.

 

[obascin]

Sounds a lot like Crohn's to me. Your story is very similar to mine. IN fact, I also spent a few years trying to determine if my constant bathroom trips were normal, and my general practitioner was a quack! All those years of "Oh it's just stress" lead to years of scar tissue and ulcerations that permanently damaged my intestines.

I would highly recommend you go straight to a GI specialist and have a colonoscopy and get blood work done. I hate to say this, but if you already have scarring, you might not be able to fight this with meds alone. I only had 14 months between diagnosis and surgery and tried several meds to get it to calm down. The damage was already done

I wish you the best! The sooner you get a clear diagnosis from a good GI doctor, the sooner you'll start on treatments. More importantly, don't be afraid! It's a miserable experience, but there's always a bright side, just make sure you keep looking for it.

 

[marie.trin.2]

Thanks so much for all of your extremely helpful replies. I've scheduled a doctors appointment for tomorrow. I'm really nervous because it's really embarrassing to talk about. Also, I'm really worried about not being taken seriously.

 

[David]

While I understand your feeling embarrassed, trust me when I say your doctor will think nothing of you talking about your intestinal tract and poop. They hear it so much they will forget all about it as soon as you leave. And any even remotely decent doctor is going to take you seriously.

 

[24601]

I just want to second what David said. I know I felt embarrassed at the idea of talking about my bowel movements with a doctor but the truth is doctors (especially gastroenterologists) hear their patients talk to them about poop all day long! Every day! They don't find it remotely embarrassing or abnormal and it helps to remember that!

You can do it! It's important! And if you think it will help, write yourself some notes so you have it a bit thought out in advance (plus any wording that will help you deal with your embarrassment - ways to talk about frequency, urgency, consistency etc that you feel okay with...but trust me gastros have heard every term you can think of!) Also you might want to think what you will say just in case your doctor tries to tell you they don't think it needs further investigation - I don't think there's any justification for that but it can help to have a calm reply prepared making it clear that your symptoms have been significantly impacting your life for a long time now.

Lots of luck! I hope your appointment goes well! Know that we're all supporting you and let us know how it goes!

 

[24601]

How did the appointment go? I hope you have a plan to move forwards and get a diagnosis.

 

[marie.trin.2]

Hi everyone!

So sorry for the delay in getting back to you all. My doctor just said oh, yes, there is something going on but didn't give any indication of what it was. I said how I was worried about IBD and he said that he was the expert and to leave it to him. I totally understand that but I was just allaying my fears. He did more blood work and said we'll move on from there when results come back. He wasn't really willing to discuss anything with me til it comes back. I think I might have to drop him!

Thanks again,

Marie

 

[24601]

For what it's worth I think you need a better doctor too Let us know how the results come back!