9 years of symptoms. Still not diagnosed.

Hi,

I have spent some time reading through the forums and just wanted some advice from others that have been through/going through the same.

I first started suffering with symptoms in 2002 when I had bad bouts of diarrhoea. This continued for 2 years and then I started to have blood in my stools. I just assumed I had irritable bowel syndrome and didn't go the doctors. I got used to it and would prepare myself on nights out that I would probably need access to a toilet and bring toilet roll out with me; it almost became a way of life.

After the bleeding started I went to my GP and was then referred to a Gastroenterologist. In 2006 I had a flexible sigmoidoscopy, endoscopy and gave stool samples. I was originally meant to have a barium meal but they decided against it due to it affecting fertility (I'm 28 now). They found patches of ulceration although after a biopsy this didn't confirm Ulcerative Colitis. The doctors said to assume I had UC and I was prescribed 6 Asacol tablets a year. The symptoms came and went but I didn't really know if I had a flare up or if I had ever got rid of it. I think I never really felt 'normal'. I had used various suppositories and enemas but I don't think any of them really worked.

In 2008 I had another flexible sigmoidoscopy. This time the doctor said there was no sign of any inflammation and the bleeding was caused by a fissure. I was told to remain on 6 Asacol a day.

I went back for a check up and blood tests in June 2008 and since then my appointments have been cancelled due to staffing problems with the hospital. I did receive a message from my GP to get a blood test in February 2010 which showed I had low Vitamin B12 levels and I have now started regular jabs.

This week I received an appointment to see my Gastroenterologist within just a few days. I attended a Saturday clinic and feel like I've started from scratch again. The doctor said that I should be having annual tests to monitor risk of colon cancer as it is nearly 10 years since my initial symptoms. He said my diagnosis is still unclear, it could be an infection, Crohn's or Ulcerative Colitis. I am awaiting an appointment for a full colonoscopy, which I have never had before.

My mum has Celiac disease and I have a cousin with Crohn's. My symptoms at present consist of abdominal pain, trapped wind, sometimes I have runny stools, sometimes with blood, sometimes not. Sometimes I have normal stools and others I feel a little constipated which is quickly followed by lose stools. I sometimes have urgency to go which results in passing nothing other than blood. My stomach often bloats and becomes very hard - I look pregnant. More recently, If I am out having a meal I get an urgency and need to run to the toilet which is diarrhoea. I'm often very tired and pale, I'm not sure the Vitamin B12 has helped this.

After having the symptoms for so long I feel really frustrated and fed up. I'm just feeling scared and want the colonscopy appointment to come quickly. I just want a diagnosis and to feel 'normal' again.

I wanted to ask others if this was normal? And is there anything I should be doing or continue to wait for doctors? Thanks for reading.

Hi Patsworth, welcome to the forum. I am also undiagnosed (although I've only been ill for about a year) so I understand a lot of what you're going through. There's a thread in the Support forum called "Undiagnosed Club" which I would encourage you to have a read through - those of us who are still undiagnosed have gathered in that thread to share our stories and our frustrations.

As far as being tired and pale, in spite of the B12 injections - have you had your iron levels checked? You could be anemic, especially if you're having bloody BMs. Anemia would certainly explain paleness and fatigue. Oh, and don't let them tell you that you have IBS if you continue to be undiagnosed - bleeding is NOT a symptom of IBS. I was also told by a couple of doctors that I probably just have IBS and I should learn to deal with stress better - but I've experienced weight loss and dehydration, both of which are also not symptoms of IBS (but are symptoms of IBD such as Crohn's and UC).

Good luck on your colonoscopy, let us know how it goes. I hope you don't remain undiagnosed for much longer, I know how frustrating it can be to feel like you are in limbo and don't know exactly what's going on with your body or how to treat it!

Your symptoms certainly don't sound normal and would suggest you might well have IBD. I can't believe that the one test you need, after all this time you are yet to get. The colonoscopy will i hope provide you with the answers you need.

Take care and as Cat said, stick around and let us know how you get on.


G

Hi Pat
and welcome fellow Brit
where are you?

Just to concur, you don't bleed with IBS!
Sorry you're going thro a bad time at the mo, but fingers crossed your scope will give you a definite diagnosis, and whilst you're waiting check out the forum on the low residue diet, this will relieve some of your symptoms and give your bowels a rest.
good luck and let us know how you get on
lotsa luv
Joan xxx

Hi Patsworth and :welcome:

I'm glad you found your way here. I don't have IBD myself, my daughter does, but I also went through those same feelings of fear, frustration, anger, helplessness..........well I don't have to tell you do I! 9 years is just awful to have do deal with all the emotion and symptoms and unfortunately you're not the only one here that has been told it's IBS or it's in your head for years. Hopefully it will be some comfort to you knowing you are not alone and many people here will understand exactly what you are going through, just like Cat!

Cat is right about your fatigue, B12 is just one way you you may have these symptoms. There are different ways for anaemia to develop and with your bleeding you may have iron deficient anaemia. When you next have bloods have them check your Iron stores, this will test for Ferritin, and also have them check your Folate, even though routine bloods may show your Haemaglobin as normal you can still have depleted levels of Iron and Folate.

I don't think what you have is normal. Do you keep a diary? If not have a look at this and see if writing things down might help you track things and also it becomes a more accurate record of what is going on, it's just too easy to forget things when they start becoming normal for you....

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck with your colonoscopy! Keep us posted and welcome aboard!

Take care,
Dusty

Thank you all so much for your replies and so quickly.

I will have to chase what my bloods have been tested for. I'll certainly check the iron and anemia. I have kept a diary in the past but will start one like that as it is more detailed than I have been using.

I'm Wirral based Joan so not too far from you. Thanks again for pointing me to some useful pages x

Think I had a shock at the docs on Saturday as thought I had UC but it is all up in the air now. I'm looking forward to and dreading the colonoscopy as from reading more it seems it is the only thing that will get some results.

Hi all,

I have my colonoscopy booked for next week. I've had a bad few weeks but blame myself as I haven't been eating well or enough.

I just had a question if anyone could advise me about? Would all this bleeding and mucous along with recent vitamin b12 just be caused by an anal fissure? If so, How do you get rid of fissures?

Thanks

Someone else might be able to tell you definitely, but I don't think mucous is a sign of a fissure. I had one for about a year (prior to diagnosis - I really didn't want to talk about it with my doc), and never had mucous. You didn't mention anything about pain when passing a BM, which you would have if you had a fissure. Also, the blood will be bright red (otherwise apparently it comes from higher up).

My doc told me to get something called Rectogesic (might be called something different where you are). I put this on twice a day and it healed within a few days I think. It's come back once, but after only a couple of applications of the cream (gel?) it went again.

Blood tests and the colonoscopy should tell you all you need to know. Mention to the doc doing the colonoscopy that you have a fissure, as I think they're more careful when going in and manoeuvring around! They'll also be able to tell you if the fissure is the only location which is bleeding, or if there might be other issues...

Hope this helps, and best of luck with the test! The prep really is the worst part, so long as they knock you out!

Thanks. I've tried that cream and it did make things a little better. I do have pain sometimes but not always. The bleeding is always worse when bm are loose. Not sure if that is linked with a fissure or not.

After a bad few weeks, I've got my appointment through and start moviprep on thursday. Hoping for some answers. Thanks again

Hi Pat,

I feel for you with this undiagnosed business. My doctors just misdiagnosed me with UC 2-3 years later a new GI did a scope and said oh no, thats Crohn's. I have Crohn's colitis (meaning it stays in the colon so far!) and your symptoms sound quite a bit like mine can.

I am not sure if this will help you or not, when the GI doc who changed my DX did it, he based it on the fact the ulcerations in my colon did not run together, they skipped all around. I guess this is a hallmark of Crohn's and UC the ulcerations run from the bottom up without skipping.

Mucous and Blood in the stool happen quite a bit for me when I flare up. So it may or may not be from a fissure. I have never had one so I really do not know. I personally get hemmoriods (spelled that wrong!) and it causes quite a bit of pain with bright red blood.

Good Luck with your scope! I hope they figure it out, and get you feeling BETTER with a long term treatment to KEEP you feeling good!

Hey Pat. I cannot add any more then the others have I just wanted to welcome you and to reassure you that you are not alone. Keep coming here for support. A most wonderful place to unload.
Wishing you the very best of luck,
Michele

Hi everyone,

I had my colonoscopy which was much better than I thought it was going to be. I've been given a report today but i'm awaiting results from the biopsies. Wondered if anyone knew anything more on it?

It says indicators crohns? Also, it says my colon was mildly inflammed and diagnosis colitis/ileitis. Obviously I have to wait for results but is that UC or Crohn's?

Thanks.

If you have ileitis it cannot be UC as that only affects the colon and not the ileum. Also if there is more than one area with 'gaps' in between again that is crohn's as it tends to have gaps between affected areas. The biopsies will likely give you a diagnosis...though are not always definitive.