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Crohn's Disease Forum » Support Forum » Manchester sufferers of ibd/suspected ibd Support Group


08-04-2014, 12:38 PM   #1
Solidsam
 
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Join Date: Jul 2014
Location: Manchester, United Kingdom

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Manchester sufferers of ibd/suspected ibd Support Group

About this Support Group

Hi my name is sam... I'm pretty new to this site and got loads out of it so far! The reason i'm setting up this group is because i feel it will help all of us living in the manchester area to have a group were we can discuss everything connected to help and treatment in our area, hopefully it will help those needing info about clinics and GI's in and around manchester and also just for local support. Hope it'll help!

Members

Brear's Avatar Brear, crohnie1989, dgiouz's Avatar dgiouz, Dmarks70's Avatar Dmarks70, eleanor_rigby, laura75, Lolli's Avatar Lolli, Muffintop, Solidsam's Avatar Solidsam
08-04-2014, 12:40 PM   #2
Solidsam
 
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Join Date: Jul 2014
Location: Manchester, United Kingdom

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I'll start.... I've got my first appointment in salford royal hospital in the colorectal surgery clinic in a couple of weeks... Has anyone been there that can give me info on how good they are and for what i have to look out for?
08-06-2014, 03:23 PM   #3
mish2575
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Join Date: May 2013

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I'm not from Manchester, or even Europe but Hello all the same!
08-06-2014, 03:51 PM   #4
Solidsam
 
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Join Date: Jul 2014
Location: Manchester, United Kingdom

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Well thanx anyway...
11-04-2014, 12:03 PM   #5
dgiouz
 
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Join Date: Nov 2014
Location: montreal, canada

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glory glory man united
11-15-2014, 05:09 PM   #6
crohnie1989
 
Join Date: Nov 2014
Location: Manchester, United Kingdom

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I know this was from a while ago but just joined the forum. I'm also in manchester and go to Salford royal. I see Dr paine and a few of the ibd nurses too. As well as the dietetics team. I think they are all great there.
Who are you under?
Are you happy with the care you get from them?
01-22-2015, 06:43 PM   #7
Lolli
 
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Join Date: Dec 2014
Location: Manchester, United Kingdom

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Hi all, I was just wondering who, from in and around the Manchester/Bolton/Wigan area, has received really good treatment from their consultant and how long they waited for tests and or diagnosis? I am currently under the Bolton Gastro Team and feel like i'm getting nowhere fast. I am feeling really low at the moment as I have been suffering from this recent episode since last summer, and the only test they have done is a colonoscopy on 29th December. They told me to ring after 2 weeks for the results, but when i did, they said they weren't allowed to discuss it over the phone and I would receive a letter. My next appointment to see them is on 16th Feb, and as my consultant went on holiday last week, and his secretary had not received my notes, I will not get my results until he returns. I have been in agony this last week, even though i am on quite strong pain relief, and when I rang my GP to discuss my recent blood test results, which showed raised ESR levels, and I told him about my pain, he just px'd me another anti-spasmodic. All i want is some answers about what is going on, and then maybe I can start some treatment that can treat the problem, and not just the pain it is causing.

I was also urgently referred to the Chronic Pain Team back in September, and only got a phone call from them yesterday offering me a cancellation for tomorrow. I have not been able to eat for 3 days, due to the pain it causes, even though i tried again this evening (just a plain toast) but after just half a slice, i couldnt eat anymore. I'm sick of being sick and just want my life back. Apart from hospital or GP appointments I have hardly been out since September, and only do go anywhere after I have taken immodium to ensure i won't need the loo whilst i'm out. After that, i then become constipated, and it can be over a week before the diarrhoea starts up again.

Would really appreciate any of you who are in the North West area, who have been in a similar situation, could let me know their experiences too, good or bad.
01-22-2015, 07:06 PM   #8
crohnie1989
 
Join Date: Nov 2014
Location: Manchester, United Kingdom

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You poor thing!

Both myself and my husband are under Salford Royal in Manchester and very happy with the care there. The ibd nurses have evening appointments and they can generally see us straight away of we make an emergency appointment by calling the ibd team. My consultant has also put me in at the beginning of his clinic at half 8 in the morning as that was the only time I could make it.
02-08-2017, 08:59 AM   #9
Dmarks70
 
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Join Date: Mar 2016
Location: Manchester, United Kingdom

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I know this an old thread but can I join.....in sunny Stockport but under Trafford hospital but my GI works in Wilmslow. I don't understand it either! I don't have access to an IBD nurse so have to save all my questions/worries for the 10 minutes I get to see her every 3 months!
02-23-2017, 03:06 PM   #10
Muffintop
 
Join Date: Feb 2017

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My partner suffers from crohns and chronic pancreatitis, we are under Dr Makin at MRI Manchester Royal. After being diagnosed in November 2013 and being under Dr George at Rochdale Infirmary but making no progress in over a year we saw Dr Makin privately and was referred to see him under the NHS.

Still struggling to control the symptoms of the conditions and of the medications. IBD nurses are available but we have never been introduced or contacted by them, can be seen earlier or in between regular specialist appointments if suffering more than usual.
02-23-2017, 03:13 PM   #11
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Muffintop i am thinking of getting referred to this hospital. Do you feel supported? What treatment are they recommending? How long are your consultations? If it's just in/out without seeming like they care about you then I may ask to be referred to Wythenshawe instead.
02-23-2017, 03:36 PM   #12
Muffintop
 
Join Date: Feb 2017

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I do feel they are supportive, they have around four registrars - you are given to one of them each time you visit. You can specify to see Dr Makin but you may have a longer wait. You spend around 15 mins with them but we have spent up to 45 minutes with them when necessary. You are not rushed along, each appointment runs its course.

Treatment for crohns is managed with humeira injections - increased grumbles and gripes at the moment though so another colonoscopy could be on the cards but may be able to check things with a stool sample. MRI done three months ago at hospital was fuzzy. The pancreatitis is the thing that's hard to manage, no treatment just pain relief and acid relief.
02-23-2017, 03:39 PM   #13
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Great sounds just what I want! I currently get a 2-5min consultation, have had no relief on a year of being on 50mg of azathioprine and not being given a colonoscopy in over 14 months at nottingham
02-23-2017, 03:47 PM   #14
Muffintop
 
Join Date: Feb 2017

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Looks like you need a change!
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