Had my 1st consultation & more confused than ever! :-(

Hi Jo,he sounds like a consultant I saw on the NHS! Lying back in his chair and checking his mobile. After reluctantly checking my neither region with the flexible camera he said I had piles!!! Absolute rubbish!! This led me to paying privately as you did and he was fab! Horrified by previous diagnosis I might add!! He got me on his list as a NHS patient and I see him six monthly,and am encouraged to ring his secretary with any problems,what a difference!!! Anyway your consultant should have been able to differentiate between Chrohns and UC by looking at your biopsies(done during colonoscopy??? Probiotics; studies have shown good results in treatment of UC ( not sure on Crohns) but it's up to the individual if they take them or not? My GI  " suggested"I might try Boots digestion support,but not essential. Again some people experiment with foods and swear some make the condition worse,especially in a flare. As your colon is inflamed the Asacol and rectal meds will definitely help,I have been told NEVER to stop the meds or risk a nasty flare! A lot of this disease is about trial and error and can be very frustrating. I would push for a definitely diagnosis at your next visit? Keep taking the meds would be my advice. I know a lot of consultants praise and promote the NACC website but it's nice to get advice on this website also!!! What area is your consultant in? Take care and sorry for the rambling reply xxxxx

 

Hi again Jo,forgot to answer your question! My appointment went well,and basically I am in remission,long May it last! My consultant now lets me manage my own meds regime and I can adjust them according to my symptoms. I have ulcerative colitis affecting the rectum and a little beyond(proctosigmoiditis). I have every confidence in him and always go armed with questions,which he patiently answers! The option to get a message to him through his secretary is invaluable to me! Did they tell you that you had ulceration or only inflammation? I believe inflammation only indicates colitis as opposed to ulcerative colitis. I hope my answer has helped as I remember how devastated and confused I was the first year or so! Please don't worry,keep up with your meds and you will lead a normal life xxxxxxxxx

Hi, Don't let that 'lovely' consultant get you down, just feel sorry for him being in such a position and not being abe to explain his specialism effectively! Obviously not a people person!

I was diagnosed with Crohn's disease when I had biopsies for coeliac (I had cameras top and bottom so to speak and biopsies taken from each), I was admitted to hospital as an emergency just over a year ago with UC, further camera up the btm and biopsies confirmed this. Many people state you can't have both but my consutant (who is lovely and I feel very fortunate to have him) explained that there are more and more cases being found where biopsies are showing people to have both.

Coming back to you and your meds, don't worry too much about which disease you have as the meds prescribed treat both conditions (and many cancer cases too).

Jill is right with regards to food, what works for one person doesn't for another so you need to find the foods that you cope best on and avoid the ones that upset you.

Chin up, it will get better - just may take a little time and it is a huge learning curve. I wish you all the best. XXX p.s. This website is brilliant, some of the posts on other forums contain too much information for newly diagnosed (such as you and me) andtend to scare the pants off ya! Take care. XX

Thanks so much ladies, as always a huge relief to talk with people who actually understand what I'm going through & are prepared to listen! He was certainly NOT a people person & couldn't wait to get rid of me. Put it this way...I must have asked about 15 questions & he looked through my report & findings from my colonoscopy & I was outta the door within 20 minutes. This chap is seeing me through the nhs but also practices privately as they pretty much all do. The GI or surgeon who carried out my colonoscopy told me within a couple minutes that I had ulcerative colitis & it was called distal but was moderate as only 30cm was affected. She showed me the ulcers on the TV screen and I even have pictures of them. I can't think why the biopsy results wouldn't confirm whether it is UC or Crohn's, the lady just said that my bowel is inflamed but the results couldn't determine which one I had so he is going to treat me on the understanding that I have UC as my Aunty has it + colon cancer & also my grandmother suffered with it too. I guess I'll never know properly unless they carry out another colonoscopy?! Does Crohn's disease show up ulcers too?

I'm just going to do what you've all suggested and listen to what my body tells me which this consultant smirked at when I told him, charming eh?! I already know I can't eat coleslaw..lol!! I'm guessing that certain foods will cause cramping & tummy pain? Do u ladies get occasional diarreah now or do the meds keep that at bay? My toilet habits are normal now but still can't shake these stomach pains that seem to be there all the time. He did examine me  and pushed down hard on my tummy but it felt so so sore and he said there's still lots of inflammation there. 

I'll keep taking the pills & just take each day at a time and rest assured that 'in my consultants words' "I don't have to worry about cancer for at least 10 years" so I guess that fills me with some hope :-) 

Glad you got on well Jill & fab news you're in remission! So jealous of your lovely GI. Fancy swapping? I live in Gloucestershire so my local hospital is Gloucester, managing at the mo to using a private hospital but he told me as soon as my condition worsens, I'll have to see him at the major nhs hospital, what difference would that make?!?! 

Anyway thanks for listening to me moan..,,again but once again I'll feel like I've learnt a huge amount from this chat so thanks :-)) Xxx

Hi Jo,just a quick answer to your questions! No,I don't get diarrhoea and haven't from the beginning. Consultant said because my UC is in the rectum and just a little beyond it doesn't cause diarrhoea usually. My symptoms from day one were blood,mucus,low abdominal pains and the worst,horrible urgency!  I also get the horrid " ring of fire". Fun eh? I still get a lot of pains from below belly button to my " lady bits" which drives me crazy at times. Tried eliminating coffee,gluten,dairy,etc etc but doesn't seem to help so now eat practically anything. Consultant explained on Tuesday that the colon can spasm,causing the pain. Tried Buscopan,peppermint oil caps,Colpermin,heat pads etc 

Sorry message went to you before I finished!!!! I also take Solpedeine max,one tab in water,if pain is bad. Consultant tried Mebeverine a while back but didn't do much! He suggested trying Buscopan again,two tabs at first sign of pain,up to two tabs four times a day,so will try again! I also find a firm massage in a circular route sometimes eases it. I am not an expert by any means but when I see questions that I can relate to I just want to share things I've tried. Remember the shock, confusion,and worry when I was first diagnosed! Sorry if I ramble but never mind answering questions that I know something about .keep in touch xxxxxx

Hi Jo,make sure you're not constipated? Left sided pain is usually connected to distal colitis but if it gets really bad I would seek help? Meantime,I find microwaveable heat pouch soothing,or if paracetamols no help,Solpedeine plus,but not too many as they can constipate you,which you don't want xxxx

Sorry you are going through this. I take probiotics was told there was no harm in that.Ifirst got diagnosed with diverticulitus  .and bought 2 books on it and started doing all what it said then after 3 weeks they said no it's uc. I was deverstated cause I think that is worse.B.

 

Good morning ladies & thanks so much again for your help & knowledge. I'm a bit unsure what to do really. I've still got this pain on my left hand side which has been going on for a few days now & can't shake it. I really don't want to wait till the end of November to talk to my consultant. I want to know what I've got, surely this isn't too much to ask? I was thinking of sending my consultants secretary an email asking for some advice. What do u think?

I don't know who I'm supposed to turn to as my gp knows very little about all this so has told me to speak to my consultant but he's written to me saying he doesn't know what I've got, could be UC, could be Crohn's but we'll discuss at my next app at the end of Nov! I guess I'm just panicking now as don't want to wait all this time without knowing what's going on in my body & living with all these pains. How do I know that it's nothing serious? I found it almost impossible to bend at all yesterday, surely this isn't right ladies? I'm still so clueless about all this. Just wish I had a helpful consultant

 :-(  Sorry for the moan but I feel a bit lost today. Xxx

You can have an inflamed bowel without a diagnosis of uc or crohns. I have left sided pain there constantly when it flares. I have had this on and off for years. In my case it is usually down to stress, alcohol (not huge amounts) and diet. What a horrible experience with that consultant. Stress and some foods are known to irritate the gut it's just finding what it is in your individual case. I saw a GI consultant who was fab and explained everything. So sorry you had a bad experience. Ask your gp to be referred to another consultant .

It's awful Inever went out for a month after my colonoscopy . It hurt a lot . No sedation. Torture. cant go to bingo anymore. Went for a meal last week with friends  in a posh restaraunt and had to go to the loo 4 times . Talk about embaresed I wont be going there again.people must have been thinking why does she keep going to the loo.