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Ulcerative Colitis
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Posted 3/31/2014 12:33 PM (GMT 0)
Hi Guys,
As the title says I am new to this site and have joined looking to gain some information from other suffers who may be able to help me with this condition.

My symptoms are currently worse than normal;
Constant feeling like you need to go to the toilet but nothing comes,
Blood-loss, this is getting heavier, (water is always very red),
Air, quite powerful, every time I go to the toilet,
Tiredness after a flare up,
Achy pain in the rectum,
One thing I do not get is weight loss. I am an active cyclist and monitor that a lot.

I have been dealing with what I believe to be UC or UP for a round 5 years, I say believe as my GP is useless and has always given me very little advice that I have found useful!

I did have the colonoscopy , that was pleasant! they informed me that there was UC present, I think they said about 6 inches up.

After finding this out, I went back to the GP and the provided some foam that should be inserted through the anus manually... I didn't really get on to well with this, I found it to be putting more air up there leaving more discomfort.

I was then given asacol which I found not to be that effective so I went on to take nothing for a year or 2, I then realised i was being silly and went back to the asacol, I have been taking it for around a month again and still find it has little effect.

After this time I am now thinking of going privately to help get some treatment to go with it and was open to any tips and advice you guys may have.

Many Thanks
Posted 3/31/2014 12:37 PM (GMT 0)
Welcome to the boards!

What country are you in?
Posted 3/31/2014 12:39 PM (GMT 0)
I apologise I should of said.

I am 32 and Live in the UK (with the dream of living in the US one day lol)
Posted 3/31/2014 12:45 PM (GMT 0)
Ehhh, the US is okay :P thats where I am.

The reason I asked is because usually when you are given a UC diagnosis (here atleast) you then have a doctor for your disease... which should be a gastroenterologist. A GP is not trained to deal with our lifelong condition.

Having left your disease untreated and getting worse for so long, id suggest an appt with a Gastro doctor asap, another colonoscopy to see whats happening in there, and get on proper meds.

As im sure you've noticed, a healthy diet and keeping active can help... but usually not enough.
toilet bowl full of blood is the #1 thing on your list that has me worried. Anemia sucks.
Posted 3/31/2014 12:54 PM (GMT 0)
If I am truly honest, I did have another appointment many years ago to which I failed to attend, this may have been my doctor for that?

I did the keto diet for that period without the asacol and found that good fats, olives, omega 3 and six, flax seed all helped out a lot.

If that has you worried... I guess I should be more worried as it has been like this for years, always present and fairly heavy when wiping to... :(

I think going private me be better? NHS here can be a pain.
Posted 3/31/2014 12:55 PM (GMT 0)
You should have a GI. The blood may very well be coming from hemmies or I believe you call them piles. I have seen several who do not do well on the foams. I would find a real GI and talk to them about getting rid of the foam. I would see if the Asacol does better when you're not on the foam. There are several other options but you should be discussing those with a GI.
Posted 3/31/2014 12:59 PM (GMT 0)
I think what gary is trying say is, you should see a GI !
Posted 3/31/2014 1:05 PM (GMT 0)
Yes I think that is on my list of things to do today, really cant bare the thought of that colonoscopy again... last time I did it with out the sedation due to be scared of needles...

That like many of my choices in life was not the best one I made.

Thanks for the replies.
Posted 3/31/2014 1:12 PM (GMT 0)
I have a ridiculous needle phobia.
which sucks with this disease.

Ask for a little valium or xanax before the procedure. Its very common for blood draws and things.

I loved my colonoscopy... best nap of my life!
Posted 3/31/2014 1:31 PM (GMT 0)
I live in the UK and I was shocked to read your post. I don't understand why you were discharged from the consultant. UC patients generally don't get discharged, ever (unless they have the op perhaps) - we always know when our next appt is with the gastro. Your GP should not be managing your UC.

When I became ill, I admit the GP I saw was less than useless, and I had to insist on a referral to a Gastroenterologist after being dismissed despite obviously concerning symptoms. Since then I have been cared for by a gastroenterologist and IBD nurses that I can contact via mobile either by calling or texting.

Personally I am very grateful for the NHS - I've read people state on here that they can't afford their medication. An NHS 12 month prepayment certificate covering all medication (even the biologics costing thousands of pounds) costs just £104 a year, and all of our medical treatment is free.
Posted 3/31/2014 1:36 PM (GMT 0)
I think the appointment I missed many years ago may well have been a GI, all I know is since the day I left the colonoscopy the only other person I have ever spoke to is my GP.

You are 100% correct on the NHS, it is good but just from my experiences with other family members and illnesses its not been to good, just merely pointing I may go private.

Can I just ring my doctors and ask for an appointment? Sorry for the silly questions.
Posted 3/31/2014 1:40 PM (GMT 0)
You need to get your GP to refer you back to the gastroenterologist. I waited 6 weeks for my first consultation.

If at any point you get very ill, eg going 15 to 20 times a day, raised heart rate, possibly a raised temperature, then you can go to A and E. They would do blood tests (CRP levels - to get an indication of inflammation, RBC, WBC, liver function etc), and an x-ray, and you would be seen by a gastroenterologist in A&E.

You can of course go private if you choose to, but would they cover a pre-existing condition?
Posted 3/31/2014 1:44 PM (GMT 0)
It sounds like you must have "slipped through the net" somehow. After the colonoscopy you should have had a follow up appointment. Maybe that is the one you missed, like you said.

Roughly which part of the UK do you live in? Just curious - you can give me a broad idea if you don't want to risk being identified! (ie North, South, North East, West etc)
Posted 3/31/2014 2:03 PM (GMT 0)
I am in Essex (South East), The 15 times a day has been beaten since last night! I have probably done that this morning alone!

Health wise I feel fine, as for the blood, on the colonoscopy they did mention some very small hemes/piles. these were internal.

I think I have just had my first real flare up? I had them before like every 2-3 weeks, I would have a day were i went to the toilet for a long period, I would actually empty a fair bit but then be really sleepy and have a nap...

As for the private, I just been told they will not cover pre conditions...
Posted 3/31/2014 2:16 PM (GMT 0)
How many times have you been in the last 24 hours?
Are you keeping hydrated?
Are you in any pain?
Are you sure you feel fine rather than just enduring the problem?

I only ask because I was sent by my GP to A&E after an abdominal examination (pressing the stomach area) as I was going to the toilet over 20 times and vomiting. The gastro admitted me to hospital on the basis of my symptoms, x-ray and blood test results. I was arguing that I didn't need to be in hospital until they gave me the evidence.

Not suggesting you need to go straight to hospital, but can you get a GP to do an abdominal examination to see if you are tender anywhere, check for bowel sounds etc, as well as referring you to a consultant gastroenterologist?

Post Edited (UCyousee) : 3/31/2014 8:19:24 AM (GMT-6)

Posted 3/31/2014 2:24 PM (GMT 0)
Last 24 hours: I have visited the toilet over 20 times, not really going each time though, mainly air, mucous and blood.

No Pain as such, just 20 times wiping and straining takes its toll...

Asacol run out Friday morning which I can get more Wednesday, a muck up on my part with the prescription.

I genuinely do feel fine, I will drink more and call GP right now!

Thanks
Posted 3/31/2014 2:26 PM (GMT 0)
Good luck with your GP. If they aren't co-operative then be firm and insist on a referral - and then don't forget your appointment ;-)
Posted 3/31/2014 3:24 PM (GMT 0)
Well I called the GP to book an appointment and explained the situation, they informed me they referred me to a GI in 2012! (I truly am a wally)

They said I need to come in again to see the GP, next available appointment...?

April 23rd.
Posted 3/31/2014 5:36 PM (GMT 0)
You might want to consider the root I took which was to pay for an initial private consultation (around £140 I think). This didn't tell me anything I didn't know already, but it did get me a quick appointment (within 10 days) and it did fast track me back onto the NHS with a sigmoidoscopy (around 4 week wait).
Posted 3/31/2014 8:34 PM (GMT 0)
I think it's a little long to expect you to wait 3 weeks to see the GP and then a further possible 6 weeks for the GI appointment even if you did miss your 2012 appt, because your GP should not have been trying to manage you since then. They should have re-referred you to the GI when you last went to see them.
Posted 3/31/2014 8:39 PM (GMT 0)
Well thankfully it finally has calmed down a bit, never really had it continue for a long period like that.

I did manage to get the asacol quicker, I can collect that tomorrow. Anyone else have any experience with it?

My partner is telling me to ring them again and ask for a cancelation. Alternatively the suggestion above seems most result full.

Just wanted to say thanks for all the replies. I will keep you all posted.
Posted 3/31/2014 9:00 PM (GMT 0)
I started off on asacol - 2 tablets 3 x a day. Then I switched to Mezavant - 4 x 1.2g a day for a flare, 2 x 1.2g during remission - because I kept forgetting to take the asacol 3 x a day and was getting headaches.

Many of us are on rectal mesalazine eg suppositories (Pentasa) foam or liquid enemas - as well as oral mesalazine. It takes a bit of trial and error before finding which works for you / which one you are more comfortable with. The next step would be to take steroids - oral and possibly rectal as well.
Posted 3/31/2014 9:03 PM (GMT 0)
Mines 1 three times a day but as said before I haven't found it to be effective.

Had better results from diet, less carbs and more good fats, oily fish etc
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