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1,295 public posts

Fistula and swollen lower face

Hello, our son's Crohn's symptoms are an anal fistula and a swollen lower lip. He is scheduled to have his first Remacade infusion in 2 weeks but recently his entire lower face and gums are starting to get more swollen: should we wait for 2 weeks? It took more than 6 months to get a diagnosis.
Hello, our son's Crohn's symptoms are an anal fistula and a swollen lower lip. He is scheduled to have his first Remacade infusion in 2 weeks but recently his entire lower face and gums are starting to get more swollen: should we wait for 2 weeks? It took more than 6 months to get a diagnosis.
Choisel profile image
Choisel
in Crohn's and Colitis Support

Hiv testing explaination

Hello so I recently had possible hiv exposure got tested rna pcr at 11 days and was negative thankfully got tested again at 59 days negative rna and now after starting prep I’m getting tested at my 3 month mark but I had questions regarding these test I understand these rna test can detect the earliest
Hello so I recently had possible hiv exposure got tested rna pcr at 11 days and was negative thankfully got tested again at 59 days negative rna and now after starting prep I’m getting tested at my 3 month mark but I had questions regarding these test I understand these rna test can detect the earliest
jeditroopz profile image
jeditroopz
in BASHH

No MRI results/still have bowel symptoms

Hi Everyone, I had an MRI to rule out deep endo on my bowels as I have bowel symptoms similar to IBS along with my endo symptoms. The gynae consultant said they would get in touch if they saw anything that required a multi-disciplinary team and I never heard anything about my results? I've come to
Hi Everyone, I had an MRI to rule out deep endo on my bowels as I have bowel symptoms similar to IBS along with my endo symptoms. The gynae consultant said they would get in touch if they saw anything that required a multi-disciplinary team and I never heard anything about my results? I've come to
sagexia profile image
sagexia
in Endometriosis UK
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Delusions/Hallucinarions

I became very sick 5 years ago with all the symptoms of PA but was undiagnosed. I got to the point where I started having delusions of parasitosis and hallucinations. Has anyone else experienced delusions or halluconations? I'm afraid my brain may have been permanently damaged?
I became very sick 5 years ago with all the symptoms of PA but was undiagnosed. I got to the point where I started having delusions of parasitosis and hallucinations. Has anyone else experienced delusions or halluconations? I'm afraid my brain may have been permanently damaged?
sunshinebee profile image
sunshinebee
in Pernicious Anaemia Society

Rectal prolapse and pudendal nerve pain

I am new to this, I have a suspected mucosal prolapse (similar to rectal prolapse) in my bottom. The symptoms are horrible - a feeling of pressure inside my bottom and pudendal nerve pain all around my bottom. I am waiting for an ‘examination under anaesthetic’ for a confirmed diagnosis but in the meantime
I am new to this, I have a suspected mucosal prolapse (similar to rectal prolapse) in my bottom. The symptoms are horrible - a feeling of pressure inside my bottom and pudendal nerve pain all around my bottom. I am waiting for an ‘examination under anaesthetic’ for a confirmed diagnosis but in the meantime
Beautifultrees profile image
Beautifultrees
in Pelvic Pain Support Network

Lip biopsy

I would pose this question on the Sjogren’s forums but have not had much luck getting replies there and know many of you will have had this procedure done as part of your AI journeys, so hope you don’t mind if I pose it here. That’s a Louis Theroux documentary we need to see: AI journeys. My ENT doc
I would pose this question on the Sjogren’s forums but have not had much luck getting replies there and know many of you will have had this procedure done as part of your AI journeys, so hope you don’t mind if I pose it here. That’s a Louis Theroux documentary we need to see: AI journeys. My ENT doc
Geogeor profile image
Geogeor
in Thyroid UK

AMA negative but ANA positive

Hi there, I was diagnosed with PBC just over two years ago, which was such a shock to me me as I had no idea about this condition (only visited doctor for a routine check-up 😧!!) Have been on Urso ( 2 years) but my ALP and GGT are still high!! Had biopsy and fibroscan 10.1 Specialist says I am
Hi there, I was diagnosed with PBC just over two years ago, which was such a shock to me me as I had no idea about this condition (only visited doctor for a routine check-up 😧!!) Have been on Urso ( 2 years) but my ALP and GGT are still high!! Had biopsy and fibroscan 10.1 Specialist says I am
Liz_K profile image
Liz_K
in PBC Foundation

Feel lost

Hi all just looking for some advice if possible please. Has anyone had lupus diagnosed without a positive ana ? I have all the symptoms aside from swelling but the rheumatologist has now diagnosed fibromyalgia due to no positive ana. My liver enzymes have been raised since 2014 and I've been having symptoms
Hi all just looking for some advice if possible please. Has anyone had lupus diagnosed without a positive ana ? I have all the symptoms aside from swelling but the rheumatologist has now diagnosed fibromyalgia due to no positive ana. My liver enzymes have been raised since 2014 and I've been having symptoms
Haylz2109 profile image
Haylz2109
in LUPUS UK

Negative ANA Test

My ANA was negative but asking biopsy was positive for interface dermatitis ???? the skin doctor said possibly cutaneous lupus. Is it possible to have it on skin only and not in the blood?
My ANA was negative but asking biopsy was positive for interface dermatitis ???? the skin doctor said possibly cutaneous lupus. Is it possible to have it on skin only and not in the blood?
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nicole3828
in LUPUS UK

What medication do people find most helps their lupus ? Can no longer take HCQ

I've given it a good try with the HCQ, no doubt it works as well, but for me with lupus brain damage, traumatic brain injury and a previous brain haemorrhage setting off seizures last year, as many of you know, the HCQ is unfortunately causing too many seizures by reducing my seizure threshold. After
I've given it a good try with the HCQ, no doubt it works as well, but for me with lupus brain damage, traumatic brain injury and a previous brain haemorrhage setting off seizures last year, as many of you know, the HCQ is unfortunately causing too many seizures by reducing my seizure threshold. After
LottieLou96 profile image
LottieLou96
in LUPUS UK

Malar rash diagnosis/confirmation

I am ANA positive plus Ds DNA (May be spelled wrong !) also pretty severe Raynauds. I also have what appears to be a Malar Rash.My Rheumy has referred me to dermatology but the wait time is incredibly long/ Have any of you sought a private Dermatologist ? I feel my treatment/care plan is at a standstill
I am ANA positive plus Ds DNA (May be spelled wrong !) also pretty severe Raynauds. I also have what appears to be a Malar Rash.My Rheumy has referred me to dermatology but the wait time is incredibly long/ Have any of you sought a private Dermatologist ? I feel my treatment/care plan is at a standstill
DottyLotty999 profile image
DottyLotty999
in LUPUS UK

Rectogesic

Greetings! I’ve been suffering from anal fissure, mainly due due to ulcerative colitis. Instead of the indicated 8 weeks I used the medication for at least 5 or 6 months on and off as it was the only thing helping. I’ve noticed a skin rash start to appear over different parts of my body and I was wondering
Greetings! I’ve been suffering from anal fissure, mainly due due to ulcerative colitis. Instead of the indicated 8 weeks I used the medication for at least 5 or 6 months on and off as it was the only thing helping. I’ve noticed a skin rash start to appear over different parts of my body and I was wondering
Ekspain profile image
Ekspain
in IBS Network

No one is offering any answewers or help

Hey, just wanted some advice or similar stories. I've had endo for around 10 years 4 laparoscapys later and I've been told I can't have any more as it could cause too much damage. I use the contraceptive pill to manage the endo as I've tried pretty much everything else. They don't really want to help
Hey, just wanted some advice or similar stories. I've had endo for around 10 years 4 laparoscapys later and I've been told I can't have any more as it could cause too much damage. I use the contraceptive pill to manage the endo as I've tried pretty much everything else. They don't really want to help
jjmurph1234 profile image
jjmurph1234
in Endometriosis UK

Lost in Autoimmune Land: If my labs are so good, why do I still feel so bad?

Hello, All! Yesterday had my first in-person visit with my rheumatologist in a year and a half. I handed him a 3- page synopsis of all my joint and related issues (only because I would kick myself later for having forgotten certain points!), and had an alarming number of vials of blood drawn. Most
Hello, All! Yesterday had my first in-person visit with my rheumatologist in a year and a half. I handed him a 3- page synopsis of all my joint and related issues (only because I would kick myself later for having forgotten certain points!), and had an alarming number of vials of blood drawn. Most
RxMe profile image
RxMe
in Sjogren's Support

Myositis

Does anyone on here have myositis as I'm worried I may have this condition as I have aching muscles most of the time. Don't know if it's side effects of high dose statin I'm on or possibly myositis, but either way,it's making me think there's no hope for my future.
Does anyone on here have myositis as I'm worried I may have this condition as I have aching muscles most of the time. Don't know if it's side effects of high dose statin I'm on or possibly myositis, but either way,it's making me think there's no hope for my future.
sobs1962 profile image
sobs1962
in Thyroid UK

Piles

Following the serve constipation and staining I now have horrendous external piles. Very painful, does anyone have any advice on what’s best to use to help?
Following the serve constipation and staining I now have horrendous external piles. Very painful, does anyone have any advice on what’s best to use to help?
Bassem1979 profile image
Bassem1979
in IBS Network

Weakly positive ANA

Hi, i have had fibromyalgia for 6 years now however i have now started to experience swelling of toes and hands and suffering pain in arm, shoulder and collar bone with pins and needles in my right arm consistently now since Christmas day. I have had Rheumatoid tests run which have come back clear however
Hi, i have had fibromyalgia for 6 years now however i have now started to experience swelling of toes and hands and suffering pain in arm, shoulder and collar bone with pins and needles in my right arm consistently now since Christmas day. I have had Rheumatoid tests run which have come back clear however
Smithy180 profile image
Smithy180
in My Fibro Community

anyone's thyroid affected by the astrazeneca ?

I had the Astrazeneca in March, & have has a scary time with serious adverse reactions. I'm now seeing a brilliant homeopath & my energy levles were so low he gave me a thyroid remedy, it improved them, he stopped it as levels were good, then they slumped again...So I'm back on his thyroid remedies &
I had the Astrazeneca in March, & have has a scary time with serious adverse reactions. I'm now seeing a brilliant homeopath & my energy levles were so low he gave me a thyroid remedy, it improved them, he stopped it as levels were good, then they slumped again...So I'm back on his thyroid remedies &
Avidreader profile image
Avidreader
in Thyroid UK

New member with strange neuro issues

Hi There, Hoping there may be someone in this group that may unfortunately be in a similar situation and can shed some light on what’s going on I’m a 26yo female, I have been experiencing a combination of strange neurological and pain symptoms for the last few years which I have never had previously
Hi There, Hoping there may be someone in this group that may unfortunately be in a similar situation and can shed some light on what’s going on I’m a 26yo female, I have been experiencing a combination of strange neurological and pain symptoms for the last few years which I have never had previously
Diagnosistbc profile image
Diagnosistbc
in Neuro Support

Management of functional gastrointestinal disorders (IBS & Dyspepsia)

Hi everyone .Happy New Year. Posted a number of times and thank you for your supportive posts. Like most of you I have struggled with IBS-C for a number of years. Towards the end of last year i was so fedup decided to 'take the bull by the horns' and to have my piles (prolapsed and bleeding) removed
Hi everyone .Happy New Year. Posted a number of times and thank you for your supportive posts. Like most of you I have struggled with IBS-C for a number of years. Towards the end of last year i was so fedup decided to 'take the bull by the horns' and to have my piles (prolapsed and bleeding) removed
guitarman49 profile image
guitarman49
in IBS Network
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