Why can't they diagnose inflammatory bowel disease V ulcerated colitis

Welcome to the forum, unwell girl. I'm sorry to hear you have been struggling for so long with inflammatory bowel disease.

I've never figured out whether I have Crohn's or UC but I behave as if I have Crohn's (I had ulcers in my ileum). The treatment decisions aren't much different between the two conditions, so at this point it's not the most important part of my disease.

Sore throats can be from a lot of things, and it's impossible to say what's going on with you from what you posted. Coughs can also last a long time and can be really annoying. If yours is keeping you up at night you should get in to see your regular DR and figure out how to resolve this. There are some cough suppressants that can help. It's possible that you have a virus that has triggered a bit of asthma and there are ways to treat that too.

What meds are you using to treat your IBD? And where is your inflammation?

Check PamSmith's thread to find out more about the differences between UC and Crohn's colitis: I'm too tired to reprise it all >_>.

PS: That's a load of crap about not treating the anaemia until you've stopped bleeding. Push for stronger medication when you next see the GI doc. Kazbern - and the UC board in general - could give you better advice on rectal meds than I could.

Post Edited (NiceCupOfTea) : 9/12/2014 1:07:03 PM (GMT-6)

I... know... the... feeling.

(I also live in the UK. Dealing with the NHS for any length of time makes bashing your head against a brick wall seem the more fun option by comparison.)

It's easy to say, and not easy to do, but really you just have to argue with these people until they do something different. I found out the hard way that if you don't do this, they will be content to ignore your symptoms for basically ever.

UC tends to cause more bleeding than Crohn's, but there's always a case that's not "usual".

"they say it doesn't matter whether it's chrohns or ulcerated colitis it's all dealt with the same way! I don't know if this is true or not, we just have to take it as the truth"

This isn't an article of faith. Both Crohn's and UC involve inflammation of the bowel. The treatment options are all about reducing inflammation. The pathways available to reduce inflammation in the body are limited - you treat the local inflammation at the point of inflammation (mesalamines) or you try to break the cycle of inflammation by changing the immune response (biologics, other immune modulators). That's pretty much it.

I know Crohn's can eat all the way through the bowel or effect all of the digestive tract and UC doesn't. I've already been diagnosed with colitis, I was just disappointed after the 3 colonoscopy in 12 months they still couldn't give a definitive diagnoses, they said they treat inflammatory disease all the same, like I said I'm not sure if that's true I've got nothing to go by and I don't know any one with the diseases. I guess you got to have some faith in the national health in England if not I'd go mad!
I'm on the first rung of the ladder with all this.
Hopefully they can just stop my bleeding and pain and I'd settle for that. I've had 4-5 different meds so far most of them with asacol in its many forms, low doses and now a high dose orally and some not so orally!! nothing working so far!

Jennifer sounds like you've been through it. Your right,
Like you I'd just like to know what I'm dealing with. I will just have to play the waiting game as you did and Like you it's been years for me too. It sounds like they have yours under control? I hope so.

~Jenn

Unwell girl said...
That's exactly how I feel. It seems hard to get anywhere with them, they say it doesn't matter whether it's chrohns or ulcerated colitis it's all dealt with the same way! I don't know if this is true or not, we just have to take it as the truth, I guess I am glad they've even said it is inflammatory bowel disease because I really thought it was cancer or I was going mad and I think my husband thought I was too. Bless him! Nobody seems to realise what we are going through on a daily basis, I think people think your laying it on! They just don't get all of it, here I am up in the middle of the night yet again in the bathroom and in bad pain, this bout seems to just be taking it out of me 5+ almost 6 months and I'm getting lower and lower and very tearful. Probably I'm feeling like this because I so exhausted and very anaemic. I will go to the doctor for some iron tablet or I think I'll just go and buy some, now I know I don't have to wait until they get it under control.
Did you manage to get them to listen to you eventually? I hope you did and they have sorted you out with the right medication and your managing to have more good days that bad. Thank you so much for just understanding. )

Sorry for second post in a row... Just wanted to get the part about the meds out of the way :-/

The first rule of Crohn's club: Nobody understands what you are going through.
The second rule of Crohn's club: Nobody understands what you are going through.

(Same applies for UC, but Crohn's club is catchier.)

How bad is your anaemia? If it's severe, ask for iron transfusions. Beyond a certain point, iron tablets will not help - especially if you still have active disease and are bleeding. They can also be hard for a damaged gut to tolerate. I had a few iron transfusions, and they made a big difference straight away.

Yes and no, but more no >_>. Truth is, I left 3 hospitals in disgust and anger (the 2nd move was because we moved out of London, to be fair, and it was expensive and difficult to get to. But the hospital wasn't much cop either). At the 4th, and current, hospital I had a good couple of years and the best GI by miles yet. But by that time my disease was too far gone to go into remission; nothing worked. I had to have surgery, and ever since then it's been dire service. Appointments have been set back by months at a time and nobody is bothering with monitoring me at all. At this rate if I don't do anything, it's quite clear my hospital will not bother with another checkup for years - if ever.

But this time I'm not running away to another hospital. I'm gonna stay at my current hospital and start bugging them. It actually goes strongly against my nature: I'm articulate enough in print I guess, but in real life I just can't bear the hassle. I was also very shy in front of doctors: too shy to ask about most of the things I wanted to know about, like test results. In the long run it did me no good whatsoever. Maybe doctors don't like 'pushy' patients: but they just basically completely ignore retiring wallflowers.

(Sorry if I waffled. I'm severely sleep-deprived... >.>. Anyway, I hope something in this wall of text makes some sense to you and helps.)

No worries. It's nice when you get that brief respite of normality: does more good than any pill.

The whole experience has felt like a nightmare, to be honest... :/ To be fair, my experience isn't particularly the norm. A lot of people are diagnosed with IBD and then are in remission most of the time. That's more normal than what I went through.

The mesalazine meds do work quite well for UC and if you have indeterminate colitis or UC-like Crohn's, then they are more likely to work than if you just had straight-up Crohn's. Here's an interesting post on the role of mesalamine in Crohn's, if you're interested. (Mesalamine is the exact same thing as mesalazine: the latter is the UK spelling.)

www.crohnsforum.com/showthread.php?t=36292

Basically if your inflammation only affects the mucosa layer (there's 4 layers to the bowel in total), then mesalazines will work on that layer. The trouble with Crohn's is it can, and usually does, go through all the layers of the bowel. As for 'mild' Crohn's, I'm almost tempted to say there's no such thing. That's not quite true, but more often than not, so-called 'mild' Crohn's is either early or slow-burning Crohn's - causes the same damage in the end as more aggressive disease though.

Anyway... so you're a massage therapist? Think I need about 100 massages to unwind me... <_<.

Nice cup of tea, thanks again. Massage definitely relaxes us and I don't know if your like me when I'm stressed (like if I know I'm going out and there might not be easy access to a toilet) my pain and burning increases 10 fold! A couple of drops of Pure Lavender or camomile oil in a little carrying oil rubbed on our tummy or neck definitely helps relax me and it feels great or 10 drops in a warm bath couple of candles helps relax you too.

Lol Laurenne
I know my conversation with the doctor seems to be centred around my bowel motions - I hate it
And I did giggle with my husband when he asks me have I been on the loo all day. I never thought I'd be discussing things like this with him. It's just to much.