Diagnosed as IBS?..

[emke0921]

After blood tests, stool tests and a colonoscopy, I have been diagnosed with IBS today. My tests came out pretty much normal with 55.7ug/g in calprotectin, but my colonoscopy came back with "focal active inflammation with lymphoid aggregates" which the doctor explained as "normal, so IBS". Then when I asked about my rectal bleeding (dark red and in period like quantity), the doctor shrugged and said "I don't know about that". I have been tested for hemorrohoids, with negative results. I am so tired all the time, horrid joint pains since I was four (which was when I first experienced the cramps), my periods were always irregular since I got them at fifteen, and stomachaches persisting throughout the day. When I told the doctor about these symptoms, he merely said that he has "a little" IBS as well, and I should be able to bear it out. The meeting lasted 3 minutes and I stumbled out and I ran into the toilet to cry my eyes out.

I will keep trying to find out why I'm ill. I think my symptoms correspond well with Crohn's, but could be something else. Even though I won't give up, and I have good support from my family, I cannot shake off the feeling that I might be crazy, and that the symptoms are just made up in my head - for that's what the other doctors have told me. I have been dealing with these symptoms for almost 16 years (I am 20, female), and just want to be told that I am not crazy or delusional - for some reason I have some trouble with this even though the pain gets so bad sometimes (8/10). I really hope to be told why I'm ill soon (I have another appointment next Monday), and I truly, truly hope that everyone else who has yet to be treated properly for their illness to be helped as soon as possible. Thank you so much for reading - Lucy

 

[ronroush7]

I hope you get answers soon. Last year, I was feeling pain in different areas of my abdomen. I had an enterography and I was told it came back clear. I was told I had IBS. I kept having the symptoms. Towards the end of the year, tbey repeated the test and I was told that the Crohn's Disease was active, You might just have to keep pushing for answers with the doctor. Best to you.

 

[scottsma]

Your not crazy.No one wants to feel ill,especially a mid-teen girl who wants to enjoy life and all it has to offer.You know your own body,and obviously there is something not right for you otherwise you wouldn't be posting on here.
We have a "Young adult" thread,and also an "Undiagnosed" thread which may interest you.I hope you get the attention you need soon.Have you considered changing your Doctor ?

 

[Plittler]

Keep pushing for answers and I hope you get them soon. I know very well the feeling of going to the gp year upon year, being fobbed off with an IBS diagnosis and at times coming out in tears because no one is taking you seriously. It took me a while to get a diagnosis but I hope you get a proper one soon! Good luck.

 

[ronroush7]

I have had Crohn's for 26 years. Last year, I had symptoms. They tested me and said besides the Crohn's I had IBS. I kept having the abdominal pains. They tested me again and found out it was the Crohn's. So keep pushing.

 

[Charlotte.]

Emke, is there a chance of switching doctors? Maybe a second opinion could be helpful. Are you currently under the care of a special ibd centre? They might have the best knowledge, especially for tricky cases.

 

[ShellK]

I'm confused at how having active inflammation is 'normal'. I didn't think inflammation was consistent with IBS. I think I would be seeking a second opinion and if it's not an IBD there is still symptoms you need explained and some sort of management of.

 

[Charlotte.]

@ShellK: I think some doctors agree on the thesis that IBS is low grade inflammation but definitely not as severe as IBD, so the distinction between IBS and IBD might look more difficult based on this thesis, but a specialist should not have any doubt determining whether or not it's IBD.

 

[ShellK]

@ShellK: I think some doctors agree on the thesis that IBS is low grade inflammation but definitely not as severe as IBD, so the distinction between IBS and IBD might look more difficult based on this thesis, but a specialist should not have any doubt determining whether or not it's IBD.

Thanks for clearing that up Charlotte I'm beginning to see how it can be extremely hard to get a clear diagnosis.

 

[DougUte]

Emke

I was misdiagnosed with IBS for over 6 years before another doctor said I have Crohn's. If I was in your position, I would go to a G.I. Specialist and get a second opinion. Turns out I had Crohn's for probably 20 years before that IBS diagnosis and just did not no it.

You need to have answers that make sense. My own G.I. Specialist told me that it is common practice to diagnose IBS when they really don't have an answer. So keep pushing for your answer.

 

[ronroush7]

Emke

I was misdiagnosed with IBS for over 6 years before another doctor said I have Crohn's. If I was in your position, I would go to a G.I. Specialist and get a second opinion. Turns out I had Crohn's for probably 20 years before that IBS diagnosis and just did not no it.

You need to have answers that make sense. My own G.I. Specialist told me that it is common practice to diagnose IBS when they really don't have an answer. So keep pushing for your answer.

I agree.

 

[teeny5]

I would ask to see another Dr.!!!! Even if they think you are over reacting or something they need to have a good bedside manner, not shrug it off. Take the time to explain why something is or isn't the case Sheesh!

And since when is rectal bleeding not concerning???? I too thought that IBS would show nothing on a colonoscopy...active inflammation is far from nothing.

Keep us posted.

 

[emke0921]

Hi,
I did see another doctor for a second opinion - I had a CT scan file with me, for I ended up in the ER a week ago due to abdominal pain. They found a 2 inch cyst in my ovary (going in for a checkup next werk), but other than that there was nothing wrong, so I was sent home. I went to another doctor last week with my colonoscopy results and CT, but I must have done or said something wrong since the appointment ended with the doctor yelling angrily at me, saying that I should go to a mental health doctor, not him. I think he didn't like that I had come to him for a second opinion - he didn't even look at the data I had brought, asked me what the other doctors had said, and accused me of being overly-anxious. He prescribed me some medicine, but did not tell me what they were for, and I found out they were a kind of anti-depressant. I asked him if my CT was clean, but he didn't even look at it, continuing to say I was perfectly fine, and I was over-reacting. I realize I should have explained more of myself and symptoms, but by this point I was about to cry, so I left quickly. I think by this point, I'm a little scared of talking to doctors of my symptoms, so I'm trying to talk to a therapist to ease up on anxiety.
I've lost another 3 pounds in the last week, so I am planning to go back to my doctor if my stomach acts up further. I'm feeling better these days (the flare seems to have ended), so I will go back when it comes back. Thanks so much for your replies.

 

[emke0921]

Keep pushing for answers and I hope you get them soon. I know very well the feeling of going to the gp year upon year, being fobbed off with an IBS diagnosis and at times coming out in tears because no one is taking you seriously. It took me a while to get a diagnosis but I hope you get a proper one soon! Good luck.

I really had no idea how difficult it is to be taken seriously by doctors when it comes to these symptoms Seems evey time I go to the doctor I end up crying in the toilet, thinking I'm crazy and over-reacting. thanks so much for your support!

 

[emke0921]

I would ask to see another Dr.!!!! Even if they think you are over reacting or something they need to have a good bedside manner, not shrug it off. Take the time to explain why something is or isn't the case Sheesh!

And since when is rectal bleeding not concerning???? I too thought that IBS would show nothing on a colonoscopy...active inflammation is far from nothing.

Keep us posted.

I asked the second doctor about the bleeding, and he said that it was nothing. Not sure if he doubted I was telling he truth or that he thought it was period blood (I am female), for he said that it doesn't matter. I'm keeping a diary of my BM, so the next time it happens, I will go to the doctor again. Thanks so much for your reply

 

[scottsma]

I think the way you've been treated is despicable !!!
Please don't give up seeking a diagnosis.YOU KNOW your own body and that things aren't right.Make a list of symptoms.dates etc,and if you think you need to,go to Out-patients/emergency room.I hope you get some satisfaction soon.

 

[Plittler]

I'm so sorry you've been treated that way! Trying to be a bit more positive here... what drug were you prescribed? Before my diagnosis I was offered amitriptyline as a medication for IBS symptoms, I didn't try it but it is more commonly known as a antidepressant but can also help with IBS symptoms.Best wishes

 

[bpffitz]

I believe there's a lot at play here. Firstly, I've been in tons of situations where docs can't tell you more. Usually they're supposed to have the answers, but the gut and Crohn's are such new territory that sometimes they don't and it frustrates them. I told my former GI how I was feeling and was often told that all my bloodwork and other indicators were normal and essentially that i should feel just fine.
Your recent experience with the doc prescribing an anti-depressant shouldn't discourage you. The disease is unbelievably stressful, and there's a huge stigma that comes with depression. Don't be afraid to explore what treatment options you can for depression and anxiety. I think many of us here struggle with it because so few understand what this discomfort is like so we feel and embarrassed when we're running to the restroom all the time, taking pills and injections, getting tubes sent in and out of both ends, missing out on meals with friends and family, fatigue, frustration... it all weighs very heavily. Please don't throw the baby out with the bathwater since your recent visit didn't help your Crohn's/IBS. Look honestly at yourself and know that you're going through as much mentally and emotionally as you are physically. Counseling and medication are totally worth it, so don't be afraid to seek out that kind of help, too.
Doctors are people. There are some people you get along with and some you don't. They're busy, too. None of this excuses being dismissed or not listened to. I left a few docs and came upon someone who, while extremely busy, will hear you out and sit with you for another 2 minutes to answer the questions. I've learned to go in with a plan of attack. Try giving some concrete information. I've had X number of days where Y was happening, I am taking my medication as prescribed, and so on.
Get a new doctor, consider treatment for your mental health (I am right there with you), and know that you do not need to accept the bar being set so low for how you should feel. This is an awesome place to get ideas, answers, and support, so keep coming back, and keep on taking care of yourself.

 

[emke0921]

I'm so sorry you've been treated that way! Trying to be a bit more positive here... what drug were you prescribed? Before my diagnosis I was offered amitriptyline as a medication for IBS symptoms, I didn't try it but it is more commonly known as a antidepressant but can also help with IBS symptoms.Best wishes

I'll check into that! So far the medicine isn't doing much, but it's good to know I'll have to check my prescription list and get back to you. Thanks for your reply!

 

[emke0921]

Hi, bbfitz,
You're totally right, this truly is messing with my emotions and such. I ended a 2year long therapy about a year ago (past childhood stuff), but with recent happenings, I've felt so overwhelmed that I had to go back. I'm planning to continue therapy again, and hopefully it will help with the anxiety.
Thankfully my symptoms are not as bad as some of the people here, but what gets me most is the fear that a flare up will happen at an inconvenient time. I'm going to explain the symptoms I have during a flare up more in detail to my doctor the next time I visit, and I'm keeping a BM and food diary, as well as avoiding excessive animal fat and raw fruits. I think avoiding animal fats is kind of helping? I do plan on discussing more details on my next doc's appointment, and am trying to keep calm about it. Thanks so much for your input, it means alot