HealingWell
Search Close Search
☰

Question for UK dwellers

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/1/2016 2:12 PM (GMT 0)
I have worries about an acquired disease that developed shortly after use with UC medications (prednisone & imuran). The list of causes are all very serious and the condition itself is very rare.

I told my GP about it a year ago and he blamed it as an extra-intestinal manifestation despite all the literature out there (and I've done extensive research into all the studies) pointing against it. There was one paper with UC and the condition linked but they said it wasn't connected. Furthermore, my IBD consultant at the hospital agreed the condition was not connected to UC.

The condition has a long list of potential causes and I have asked my GP with no success to refer me to a dermatologist to take a look. I need somebody to take the condition seriously and try and find out what is causing it but I can't go to my GP because he falsely dismisses my concerns as an extra-intestinal manifestation of UC (he does this with any of my health complaints).

I've thought about going the private route but A) It's extortionately expensive (talking thousands of £) and B) the condition's potential causes are very serious and warrant concern I feel

My question is who do I go to in order to get this condition seen to?
Posted 3/1/2016 2:22 PM (GMT 0)
Go to A&E at a hospital and say it's causing pain. They'll refer you to a consultant. Tell them you've been doctors and with no luck.
Posted 3/1/2016 2:35 PM (GMT 0)
The problem is it's a cutaneous/dermatological manifestation. So going to the A&E for what will seem like a "skin issue" seems over-the-top? Even though the skin issue is a marker for whatever serious cause is behind it...
Posted 3/1/2016 2:41 PM (GMT 0)
BTW the condition is "acquired ichthyosis" and it covers my whole body. If you google it, you will see the potential causes are serious.

Especially the things like leukemia as I've been on remicade and 6mp and prednisone which can all raise the likelihood of getting leukemia. I developed this condition while being on the remicade and 6mp and my lymph nodes are constantly swelling but when I told my GP he again just said "it's an extra-intestinal manifestation of UC"...
Posted 3/1/2016 2:43 PM (GMT 0)
That's your only option unless you go private or see a different doctor.
Posted 3/1/2016 2:47 PM (GMT 0)
Do you think if I come in to the A&E and state that the skin condition popped up within the span of a few days recently (ie massage the truth) along with my lymph nodes swelling up, and that I can't get an appointment with my GP for weeks and I am very concerned, that they would see it as a reasonable for me to have gone to the A&E?

Maybe then they would be able to look into it without the lens of it being an "extra-intestinal manifestation of UC"?
Posted 3/1/2016 3:04 PM (GMT 0)
have you tried making any changes to your diet - drugs can wreak havoc on your system, sometimes causing you to develop food allergies/intolerances that you didn't have previously -

much cheaper eliminating foods that going to a specialist - might be worth a shot -

good luck in your search for an answer -
Posted 3/1/2016 3:10 PM (GMT 0)
I did eliminate a lot of different foods including gluten, sugar, dairy etc but nothing made a difference. And my condition is not caused by food intolerances although malabsorption/malnutrition can be a factor behind it which is why I tried eliminating certain foods.
Posted 3/1/2016 3:21 PM (GMT 0)
Do you guys think if I bring a couple of research papers on the condition highlighting the potential causes, tell the GP how my IBD consultant says it's not UC related that I could pressure my GP into actually looking beyond associating it with UC? I think I will try this option and if that fails go to the A&E.
Posted 3/1/2016 4:00 PM (GMT 0)
Erm, find another GP? Either see another doctor within the same practice or find another practice in your area. If the waiting time is weeks, you can bypass it by making an 'urgent' appointment - you will probably need to phone at 8am to do that.

Alternatively, your consultant can refer you. It doesn't have to be a GP who does it.

Personally I wouldn't bother any more with trying to persuade your current GP - he clearly isn't interested.
Posted 3/4/2016 5:04 PM (GMT 0)
I agree with NiceCupofTea! Ditch the GP and find another - even a locus might be able to refer you. He/she sounds like an arse and GPs are not infallible deities! Frankly, your IBD consultant should be taking it more seriously. My IBD nurses who administer my Remicade would take it seriously. I have had to fight for my son, who has autism for the last 16 years so I just don't take no for an answer anymore.

It's the squeaky wheel….

Best of luck

Cath from Brighton
Posted 3/4/2016 5:19 PM (GMT 0)
Your GP should refer you to a dermatologist if you have an ongoing skin condition that is not responding to any treatment. Not sure from your post if you have seen one?
Posted 3/6/2016 9:31 PM (GMT 0)
Do you have a consultant you see for your UC who you can bring this to? If your GP says it is UC related what does he say when you ask for a referral to a consultant derm? Mine is very happy to refer me when things are unusual. Have you asked directly for a referral?
✚ New Topic ✚ Reply