Please help!

[poorlygirl93]

I have been suffering with what the doctors say is IBS for about 4-5 years. It was reasonably manageable in the first few years however the last 2 years has been horrendous! Im 19 which is a horrible age to have a problem which affects your social life and also your relationship. The doctors sent me for a colonoscopy which was really painful and embarrassing to say the least!. The results came back all clear. My symptoms I have seem to be getting worse by the week. I have had a lot of people tell me anxiety is an issue but I know its much more than that and can't stress enough that I need answers.
My symptoms...

A really bad flare up consists of

. I get severe cramping and pain that comes in waves like labour contractions and I can't go to the toilet until the pain is at its peak at this point I'm running to the toilet in agony in a cold sweat. I get very bad D which is so painful and im usually crying on the floor in agony!

The symptoms I have constantly are ...

. Severe bloating after meals and a lot of discomfort as I can feel the food every twist and turn it makes through my intestines.
. Gas that balloons my stomach to a point I cant move as it's so painful at this point I can't touch my stomach because it is so tender.
. Feeling sick after eating a large meal and then having to be sick
. Squeaking noises from my stomach
. The occasional C but I know soon after that will follow with a bad week of D
. Tired all the time! to the point I don't want to do anything but sleep all day
. Every morning needing the toilet
. Constantly needing a wee
. When i'm on my monthly the condition gets 100% worse it's like the pain from my uterus mixes with a constant pain in my intestines
and this week I usually can't come out of the house

You can't tell me a few pills will cure this. I have changed my diet but no joy and also try relaxing techniques which still don't work.
I have read a few posts from other people saying that it could be

. A twisted ovary
. Crohn's
, Anaemia
. A twisted intestine

The doctors will not do any tests though I'm beyond breaking point now I can't deal with it any more!
The past 6 months I have lost 3 jobs because of my condition and it's putting a huge strain on my relationship he is really supportive but I feel I am dragging him down being so low all of the time.

The medication I have been on over the past few years are as follows..
Buscopan, Mebeverine, Peppermint oil, Lopermide, Amitriptyline, Omeprazole and all of the antispasmodics you can think of!

Please please help me with this I feel like I am so alone and I really need answers.

Thank you xxx

 

[xSophiexx]

Hello poorly. I would suggest going back to GP and politely demanding you get referred to a different GI .. read up on capsule endoscopy.. you may have something higher up than what can be seen on a colonoscopy. I was palmed off for IBS for a long time. Dont get me wrong it could well be IBS however the pains and bloating etc are the symptoms i started with. The being sick as well was what indicated to me that my Crohns was higher up. I know how horrible this can be I was diagnosed at 21 and cannot count how many people have now put things in places i didn't want anyone seeing haha but will be worth it if even to rule out Crohns. On the anxiety side of things have you spoken to your doc about this??
Hope you feel better soon. there is an undiagnosed club in the Support Sub forum .. there may be some helpful info there?!
Good luck keep us posted. x

 

[deb123]

I feel so sorry and disappointed for you. I read your post and you have been having such a bad time.
Its good news the colonoscopy was clear, but you are still suffering. I think you need a new doctor. Its just not right that they are refusing you more tests.
I'm afraid a diagnosis is sometimes hard to get. I suffered for years with episodes of suspected appendicitis, then I was treated for IBS and give boxes and boxes of fibre gel!!
It wasn't until I started to suffer from mouth ulcers that they started to put 2 and 2 together. Even my blood tests were fine, so it just goes to show, that not every test is fool proof, so don't lose hope.
I would write a brief history down, and how it effects you and seek out a new doctor.
Good luck, and I hope you get some answers soon x

 

[poorlygirl93]

Hello poorly. I would suggest going back to GP and politely demanding you get referred to a different GI .. read up on capsule endoscopy.. you may have something higher up than what can be seen on a colonoscopy. I was palmed off for IBS for a long time. Dont get me wrong it could well be IBS however the pains and bloating etc are the symptoms i started with. The being sick as well was what indicated to me that my Crohns was higher up. I know how horrible this can be I was diagnosed at 21 and cannot count how many people have now put things in places i didn't want anyone seeing haha but will be worth it if even to rule out Crohns. On the anxiety side of things have you spoken to your doc about this??
Hope you feel better soon. there is an undiagnosed club in the Support Sub forum .. there may be some helpful info there?!
Good luck keep us posted. x

Thank you so much. Honestly this disease makes you lose all self respect the amount of times you have had to be poked and probed. I would rather have everything ruled out than sitting here thinking I could have alsorts and not getting the help. It's really helpful knowing a lot of people are having similar problems. Thanks xxx

 

[poorlygirl93]

I feel so sorry and disappointed for you. I read your post and you have been having such a bad time.
Its good news the colonoscopy was clear, but you are still suffering. I think you need a new doctor. Its just not right that they are refusing you more tests.
I'm afraid a diagnosis is sometimes hard to get. I suffered for years with episodes of suspected appendicitis, then I was treated for IBS and give boxes and boxes of fibre gel!!
It wasn't until I started to suffer from mouth ulcers that they started to put 2 and 2 together. Even my blood tests were fine, so it just goes to show, that not every test is fool proof, so don't lose hope.
I would write a brief history down, and how it effects you and seek out a new doctor.
Good luck, and I hope you get some answers soon x

Thank you! I really am going to find another doctor I just thought I was being dramatic at first but seeing all of these post its enlightening! Now I have suffered from the occasional mouth ulcer I just thought it was normal. How often do you get them? Xx

 

[deb123]

I only get mouth ulcers during a flare, and I usually have lots which are really painful.

I had them for a while, and didn't think to mention them to the doctor until I couldn't deal with them with over the counter products, but when I did they sent me for new tests, and finally I got a diagnosis.

I had been poorly off and on from about 12 years old, and was diagnosed at about 21!!

Don't give up hope, keep a food and symptom diary.

Good luck, I hope you feel better soon x

 

[UnXmas]

I'm sorry you have been having a hard time.

I got ill at age 13 so I know what it's like going through this as a teenager. The embarrassment factor does get easier with time though. I don't think anything of being examined by doctors or discussing embarrassing symptoms anymore, but for the first few years of my illness I hated it.

I wouldn't try too hard to guess your diagnosis. You will find a lot of people here who got misdiagnosed with IBS before later getting a Crohn's diagnosis. However, remember that most of those are here because of the Crohn's diagnosis - a lot more get diagnosed with IBS and either never get another diagnosis, or go on to get a diagnosis that's neither IBS nor Crohn's. There are a lot of things that can cause your symptoms. The only way you'll know for sure is through getting more tests.

You don't seem to have the symptoms that typically distinguish IBS from Crohn's/colitis. Passing blood, fever and unintentional weight loss are the symptoms doctors usually look for to raise their suspicions of the need to test for Crohn's. This is probably why you've been told it's caused by stress, and why you might have to be prepared to fight harder to get the tests you need. You might have to go to a few different doctors to find one who takes you seriously. And please don't take it personally if/when doctors try to dismiss the severity of your symptoms or tell you it's all down to stress - a lot of us have had to put up with being told things along these lines. Try not to let it upset you, just ignore it and move on to a better doctor.

 

[xSophiexx]

Your welcome poorlygirl.. dont take no for an answer !! I dont know your personal situation but is there anyone that could go doctors with you that can help you tell them how bad you feel?! My mum always came with me and they listened more when she told them.. maybe an age thing i dont know. in my opinion though if you are young and otherwise healthy you are treated very differently than if you were older presenting the same symptoms!!

 

[poorlygirl93]

Thank you for all of your support. Yes my mum is pushing to go with me so I think I will take your advise. It's a long hard fight ahead of me but I do hope by the end of this year to have a diagnosis! Fingers crossed. You honestly don't understand how happy it makes me knowing I'm not the only one who suffers from such a hidden but awful illness and I wish you all my best. I will keep you posted on the progress. Xxxx

 

[dannysmom]

Hi poorlygirl. I just wanted to welcome you to this sub-forum. There are lots of people here with similar stories. What testing has been done? Did your colonoscopy include biopsies?

 

[poorlygirl93]

Hi poorlygirl. I just wanted to welcome you to this sub-forum. There are lots of people here with similar stories. What testing has been done? Did your colonoscopy include biopsies?

Sorry for the late reply! I had a general test just to see if any ulcers were visable. Everything seemed okay but as somebody mentioned I think it may be a bit higher up and I am pushing for more test such as bloods and also the camera down my stomach. I recently have been referred to the hospital FINALLY! August 19th im really excited sounds silly but I just need a diagnosis. Thanks for accepting me as a member really appreciate all of the support and similar stories. X