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Just diagnosed, advice needed please!

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Ulcerative Colitis
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Posted Yesterday 11:04 AM (GMT 0)
Ok, here's the story so far:

I'm 33 years old, 3 kids and work as a police officer in Edinburgh.

I started having terrible diarrhoea around the 20th of October.
I went to my Docs on the 8th November and he arranged for a stool sample.
It didn't get any better at all and about 2 weeks later I noticed the diarrhoea had turned to blood....lots of blood!
I ignored it (yes, stupid) and then my other half noticed blood coming through my clothes. An appointment was made at the docs and I even showed him a pic of the bloody 'movement' (aren't mobile phones great).

He told me he would refer me and I would probably have a colonoscopy.

2 weeks passed and nothing happened. I was getting very ill, had been passing nothing but blood (at least to the eye) for several weeks and had lost half a stone in a week (now a full stone).

I just happened to be at another appointment with a cardiologist for something else when I told her about the bleeding in case it was pertinent.

She had, what would best be described as, quite a 'reaction' to the length of time I had been waiting!
I was packed immediately off to the A&E at the New Royal Infirmary in Edinburgh and lots of tests.
From there to The Western General Hospital, Edinburgh. This was Wednesday 28th November. I was really quite ill by this point, wondering what was going on.
I had a colonoscopy on Fri pm (arse now like a wizard's sleeve, thanks for that), and sent to the GI Ward, still in the Western.

I was put on:

prednisolone 40/mg
Pentasa Tablets 4000mg/day
Adcal D3 2 tablets/day
Pentasa Enema 1/day (for 7 days)
Omeprazole 20mg/day

I looked at the pics from the colonoscopy and was told I had ulcerative colitis. They had taken biopsies from the rectum, left side and the very end of the colon. The rectum and left side were ulcerated and the very end was inflamed.

I spent 5 days in hospital and was discharged.
I was told an IBD specialist nurse would phone me on Monday or Tuesday of last week, and I would get an appointment with the consultant in about 3 weeks.

The nurses never phoned and every time I try I'm told they're not answering their pagers and you can't leave a message.
I've also never been told the results of my biopsies.

I've read a lot on UC since coming home (as you can imagine!) and I want to know if it's left sided or pancolitis. One of the Dr's thought left sided, but if it was inflamed at the end, isn't that pancolitis?!

I kind of feel a bit lost with it all/no information and can't wait to see my consultant.
I seen my GP the other day for more drugs and he was very apologetic regarding the delay (booking mess up apparently), though it turns out it was the wrong place anyway!

I feel not too bad in myself, though tired. Eating loads.
The main question I have, and would be grateful if anyone could advise me here, is I thought everything was going back to normal:

A couple of days ago I had a proper, solid movement...I was over the moon!
Then, last night, I had an 'accident' but it was pretty much clear liquid/mucus?
I've just been to the loo this morning and I'm back to diarrhoea and lots of blood VIEW IMAGE
Can anyone tell me is this normal? Is it part of the usual healing process?
I'm concerned that the previous indication would suggest the colon was healing very well, and now it's bleeding a lot again.

Any advice greatly appreciated!
Posted Yesterday 11:34 AM (GMT 0)

Hi Cameron

Welcome to the forum. I'm sorry to hear of your story, it takes me back to when I was first diagnosed. Must be an awful time for you.

I fully symapthise with you regarding the not getting results or phone calls, thats the NHS for you!  One thing you will learn over the years is you yourself will have to phone people to get results of scopes/biopsies/blood tests. Nobody will ever call you of their own accord.

It sounds to me like you have pan ulcerative colitis. Same as me. If inflammation goes beyond the left side (descending colon) it is pan-UC. And your symptoms certainly sound like a pan-uc flare.  Don't let this get you down. The first flare is usually the worst. My first flare was same as yours but since then I have had many (i was diagnosed in 2000) and all have been left sided.

In answer to your question - yes there will be days when you have a solid poo and then the next day its bloody diarrhoea. It's just the way it is in a serious flare. You should keep a food diary as well as a diary of your bowel movements. That way you can see which foods are aggravating your colon the most and thus avoid them. You will soon see which foods allow a solid BM the next day and which don't. Stick to bland foods with no fibre. And away from fried foods. You might see if dairy bothers you. It never used to for me, but it does now.

Which enema are you using? liquid or foam? I am surpised you can use an enema considering how bad your flare is. I couldnt ever hold it in. But if you can, that is great.

Start researching alternative meds to compliment your prescribed drugs. Aloe Elite REALLY helped me but its expenisive. Try and avoid salt - the prednisolone will make you want to eat everything in sight and put salt on everything. Try not to give in !! You should be getting your blood tested every couple of weeks at this stage.

Hope this helps. And good luck!

Posted Yesterday 12:11 PM (GMT 0)
Thanks so much for replying, I've been sitting checking in every couple of minutes!
I'd freally been hoping I just had left-sided. It's stll a bit confusing at the moment as I'm having to research it myself via forums, etc, but my understanding is pancolitis is the most severe form. I've also read that it undoubtedly leads to surgery, as opposed to a possibility with the other types.

I'm quite a logical, calm person and never bother Dr's, etc but I an't help feeling I've been dumped back home and left wothout any information whatsoever.
I mean, what's the point of having specialist nusrses who are suppsed phone you imediately on your discharge to help you through your initial diagnoses when the repsonse is 'They're not answering their pagers & you can't leave a message'.
I was being so positive but now feel rather down about it all.
I think I had convinced myself I would have this flare up and it would never really bother me again.
Posted Yesterday 1:00 PM (GMT 0)
Cameron,please don't make the mistake of thinking this "will never bother you again".I know that's not what you want to hear,but it's sound advice.There have been several times I convinced myself "I feel fine.it's gone now",so I stop taking the meds,and guess what?Yep,it flares up.You WILL get better,and it will probably take some experimenting with the meds.But please,once you get there DO NOT convince yourself you're "cured" and stop the meds.This condition isn't cured(at least for the time being)it's managed,and the onus for that wil be on you.As I say,please don't despair,you will get better,but you won't be "cured".Find the meds that work and keep taking them,I wish you all the best with your treatment,your job can't be easy without this problem!
Posted Yesterday 1:04 PM (GMT 0)
Thanks SL. I appreciate what you're saying.
Yes, not sure how this is going to work with my job! They have been great, my Doc has signed me off for 8 weeks just now to allow my body to recover/get the meds right once the flare up is controlled. He thinks I'll need another month of the shifts when i go back.
I hadn't been off my work for about 2 years, and am very work orientated (ok, I'm a workaholic!), taking a bit to get my head round being off and what the future holds in this respect.
Posted Yesterday 1:15 PM (GMT 0)
As I say,you'll get better.When you do,life will go back to normal and you'll do your job as well as you ever did.But as I say(sorry to keep harping on!),don't make the mistake of thinking you're cured.That doesn't mean you have to go through life acting like a sick person,you just have to keep to a regime of meds,once you find the right combination for you.While I'm on the subject of meds,has your doc mentioned Azathioprine yet?It takes a few months to "kick in",but has great results for a lot of people.Also,don't get too tied up with reading about side effects on meds,I've taken many over the years,and the benefits generally far outweigh the(possible,many times you don't suffer them)side effects.
Posted Yesterday 1:19 PM (GMT 0)
No, I've not seen my consultant yet, hopefully in a couple of weeks. I just can't believe I can go from solid movements, no blood, to total liquid of loads of blood in one day. I suppose I'll get used to all this. I thought that my colon must have healed given the last movement & all the meds. Obviously not!

I was only given a week of the Pentasa enemas, no idea if I should get any more.

Post Edited (Cameron Tait) : 12/1/2007 6:19:39 AM (GMT-7)

Posted Yesterday 1:51 PM (GMT 0)
Try not to think logically!I've had many times I thought I was out of the woods,only to "slide" again.It really does take time,and I appreciate you're still adjusting to this,but you will learn the virtue of patience with this.I'm not sure what the deal is with your enemas,maybe "testing the water" for tolerance?It's never easy,trying to keep something in,when your bum just wants to explode!I suspect that's why you only got a week's script).If you are managing to keep them in for at least 30 mins or so,get some more,they'll do their job,and as they do,stay in longer.
Sometimes it will feel like the meds are useless,and you may be tempted to stop taking them,but please don't,unfortunately it's just a matter of time,time,time!
Posted Yesterday 1:58 PM (GMT 0)
Thanks again, you've been a big help:-)
Posted Yesterday 5:50 PM (GMT 0)
Healing an inflamed colon generally takes a long time... it's not something that's going to happen overnight or in just a few days. Healing is often not a straight path either... more of a spiral with a general upward direction. Keep after your doctor/nurses until you get the answers you need. Sometimes that's what it takes, unfortunately. If you're not happy with the care you're getting, consider looking for another gastro doc.

In the meantime, I'd advise you to read everything about inflammatory bowel disease and digestive health you can get your hands on. It's up to you to learn all you can about UC and be your own advocate in learning to manage your disease. Most of us go into this knowing very little about what to expect. I've been through several gastro docs and haven't found them to be that helpful. You must educate yourself and know your treatment options. I'd recommend the following:

The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed
http://www.amazon.com/First-Year-Ulcerative-Essential-Diagnosed/dp/1600940226/ref=pd_bbs_sr_3?ie=UTF8&s=books&qid=1196531241&sr=8-3

Colitis and Me: A Story of Recovery
http://www.amazon.com/Colitis-Me-Recovery-Raman-Prasad/dp/0972706100/ref=pd_bbs_sr_7?ie=UTF8&s=books&qid=1196531241&sr=8-7

Listen to Your Gut
http://www.crohnsalternative.com/
Posted Yesterday 6:04 PM (GMT 0)
Cameron, I'm in the States, so have never experienced trying to negotiate you healthcare system. I have found, though, that the squeaky wheel usually gets the grease. Keep calling the office, if you make yourself enough of a pest to the person on the phone they'll usually kick you up to the next higher person. It's the "I don't get paid enough to deal with this" mentality. Or sometimes it works to just ask to speak to their supervisor. The idea is to bother someone high enough in the system to get something done.

Perhaps your GP could help by calling to get some information for you? Don't know if your system works that way or not. But think about anyone you know who might have any influence and use them to help you. Often we have very good doctors, but their gatekeepers won't let them help us.
Posted Yesterday 10:25 PM (GMT 0)
Hello Cameron,

As has already been said Judilyn, it's important to be persistent with calling all parties involved to get the information you need and to expeditiously schedule any appointments that may be necessary for follow-ups and or further diagnostics. "The squeaky wheel gets the grease" really reflects some of my experiences regarding healthcare.

And as Silent Lucidity has said, it's important to realize that if you indeed have UC, it is a chronic condition as doesn't go away. As was said, this doesn't mean you'll always be a sick person, but rather, you need to be aware of this and perceptive of changes to your health. Vigilance and honesty are important characteristics to dealing with this disease and managing it as effectively as possible. Stay keen on your health and pay close attention to changes in how you feel, specifically to typical UC symptoms: changes in your bowel movements including changes in consistency and bleeding, abdominal/intestinal cramping, the sense of urgency when going to the bathroom. Also pay close attention to how medications you may be using affect you.

I would also like to reiterate what Silent Lucidity has said regarding the sometimes unpredictable nature of UC. Although from my personal experience I gradually see improvement or degeneration of my condition, I have also experienced drastic improvements and degenerations. In other words, when you talk about having a normal bowel movement one day and then having a horrible bowel movement the next day, it seems very hard to believe and hard to understand. You may be inclined to think it must have been something you've done within that timeframe (something I ate? didn't sleep enough? etc), which may or not be the case. Be diligent and honest, but don't cross the line to becoming irrational. Easier said than done, I know. Just be aware that the symptoms of UC can have sharp turns in either direction.

Lastly, as time goes on, you'll learn how UC affects you. You'll be more in tune the disease and perceptive of its effects on your health. You'll develop a good degree on intuition regarding the illness and you'll know what's happening.

If you would also indulge me, I am a Canadian and am not up-to-speed with your British jargon? What is a stone? Could you please convert that to pounds or kilograms? I figured you British used the metric system, as everyone should :-) Also, what is your normal bodyweight? I'm just interested in hearing about how much weight you lost, and what ratio this weight lost is of your normal body weight. Also, what does "arse like a wizard's sleeve" mean? Or do I not want to know the answer to that question...?
Posted Yesterday 10:37 PM (GMT 0)
Thanks for your reply, and a very honest and well written one too.
As regards your questions, I weighed myself fairly shortly into the bleeding, and I was approx' 154lbs / 70kg (I reckon I had already lost some weight, but can't be exact). Within approx' 1.5 weeks, I had lost 15lbs / 7kg, though I appear to be putting it back on now.

Wizard's sleeve......I think the most 'family friendly' way to describe this would be to imagine in your mind's eye how the human 'back passage' should look, and then imagine what a wizard's sleeve looks like...capacious would perhaps be the best word, in reference to the number of examinations and their associated effect on my person:-)
Posted Yesterday 10:43 PM (GMT 0)
Wow, so you lost about 10% of your body weight from your initial flare, eh? That's pretty significant. I'm assuming the prednisone (called prednisolone over on your side of the ocean) is increasing your appetite and reducing your symptoms? That's good to hear. Let's hope everything works out easily and that you are able to achieve a long-lasting remission as easily as possible.
Posted Today 3:24 PM (GMT 0)
Cameron,I'd just like to repeat what I said earlier.Once you find the right meds for you,DO NOT stop taking them,no matter how well you feel.I've had a bad year with this disease,and a lot of the reason was I didn't keep my prescriptions up to date.It's amazing how ill you can become,because you missed 4 Asacol tablets a day for a few weeks.Also remember,flares are more treatable when you have been on constant maintenance meds.They don't always prevent a flare,but will dampen down the severity.This then allows things like Prednisolone to get to work quickly.

Please check in and let us know how things are going,I think you'll find the support on this board will help you get through this difficult period of your life.
Posted Today 3:36 PM (GMT 0)
Hi, yep, it's definately helped here! I had really hoped I would have a solid movement again today, but all blood again:-(
My other half (and myself for that matter) have noticed my skin seems rather yellow. Is this something anyone else has noticed? I am wondering if it's the drugs I'm on and what thast means.
Thanks to all again.
Posted Today 4:25 PM (GMT 0)
I'm not sure what the yellow skin is being caused by,I'd get an appointment with your GP to be on the safe side.
Posted Today 8:53 PM (GMT 0)
Cameron..yikes...it means your liver is having troubles as well.  Are the whites of your eyes yellow too?

Get thee ASAP to your GI....and stress the ultimate urgency that you're jaundiced.

Some liver problems are UC related, others are med related....do call the GI in the morning. 

quincy

Posted Today 9:00 PM (GMT 0)
Hi Cameron, sorry to say welcome to the club.......but welcome. Prior to being diagonsed they wanted me to wait 3 mos to see the GI and by that time the toilet bowls were full of blood, I basically told them that at the rate of blood I was losing I doubted I would be alive in 3 mos, they got me in the next morning. Keep on pushing!!

I agree w/the other posts it can take a long time to heal and you feel like you take 2 steps forward then 5 back then a week later you realize how much better than you were the week before (hope that is not too confusing) but sometimes I need to look back to realize how much better I am.

Hope you are able to get this under control quickly and take care.
Posted Today 9:07 PM (GMT 0)
Will do. I'm still waiting to find out who my consutlant is, but I'm going to phone the hospital tomorrow and try my best to get hold of one of these IBD nursing specialists and try to make something happen.
Apart from anything else, I'm desperate to find out which type of UC I have, and they already have the results of the bipopsies. I so hope it isn't pancolitis, but if it is, I want to know!
Posted Today 9:59 PM (GMT 0)
I would like to second Silent Lucidity's position that it is absolutely imperative to take your mdeications as prescribed. A huge mistake I've made in the past, and I'm sure I'm not the only on in here to have made this mistake, was that I played "doctor" by discontinuing my medications when I felt better. When I was new to this disease, I had an irrational phobia and general resistance to prescription medications. I naively believed that I would somehow be able to heal myself naturally through simple lifestyle changes. This was a HUGE mistake and set me back severely. Part of me believes that I had been compliant with my medications earlier on during my UC "career", I would not be in the place I'm in now with UC. I speculate that I would have been able to maintain a remission with "mild" medications such as Asacol (mesalamine/5-ASA).

The bottom line: do not play doctor, and always take your medications as prescribed. Do NOT discontinue administration of medication simply because you may feel better.
Posted 12/3/2007 4:04 AM (GMT 0)

quincy said...
Cameron..yikes...it means your liver is having troubles as well. Are the whites of your eyes yellow too?


Get thee ASAP to your GI....and stress the ultimate urgency that you're jaundiced.



Some liver problems are UC related, others are med related....do call the GI in the morning.



quincy

I just wanted to second this. I believe Asacol and prednisone both can cause liver troubles, and yellowed skin (or jaundice as it's called) is definitely a sure sign of that! You really should call your doctor ASAP and tell them this.
Posted 12/3/2007 6:38 AM (GMT 0)
There's a liver disease related to UC called primary sclerosing cholangitis.  I have it as well. 

I do want to stress that if the doctor does suspect it, then make sure he does appropriate blood tests...and if he wants to do an ERCP, opt for the MRCP (MRI) before that...it's not invasive.

quincy

Posted 12/3/2007 9:54 AM (GMT 0)
Hi,
yep, I'll keep taking the meds!:-)
Managed to finally get hold of one of the specialist IBD nurses that I was told would phone me the day after I was discharged from hospital (over a week ago now). She was horrified: turns out I'd never even been referred/passed on to them, they knew nothing about me! I've sat here for a week waiting for a call for nothing. Very apologetic (not her fault though).
Apparently they should be given your details while you're still in the ward, so they can come and see you in the ward and start the care plan/package for you.
Anyway, she was in the middle of something and is phoning me back. I'm hopeful this will be a positive thing, she was very keen to get me into the hospital clinic today.
Posted 12/3/2007 8:22 PM (GMT 0)
Wow, interesting..

Let us know the outcome of your appointment.

q
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