Documentary highlights the importance of patient partners on #Red4Research day

And  finally,  a  comedian and  two  doctors,  turned  performers, hope  their  fringe  show  has  helped raise  awareness  of  inflammatory  bowel  disease. A  lot  of  people  find  it difficult  or  embarrassing  to  talk  about the  bowels  and  you  want  to  tell  them  that  it's not  embarrassing  and  we  ought  to  hear  about  it. And  we  want  to  be  able  to  diagnose people  with  things  like  inflamatory  bowel  disease, make  sure  they're  going  for  the  pornocopes on  time  so  that  they're  picking  up things  like  bowel  cancer  eerily while  we  can  still  do  something  about  it. Hope  to  find  better  treatments that  make  the  patient  feel  better because  there  are  lots  of  powerful  treatments out  there  that  can  improve  gut  inflammation, for  example,  but  people  don't  feel  better  with  it. So  it  needs  a  whole  series  of  different  kind  of thinking  where  you  want  to  link  the  signs  to  well  being. So  when  I  was  first  diagnosed, I  thought  it  was  the  flu. So  it  took  nine  months  for  me  to  be  diagnosed. And  when  they  told  me  that  I  had  Crohn's  disease, my  first  question  was,  Can I  still  eat  everything  I  want  to  eat? And  the  answer  was  yes. But  I've  soon  figured  out  that  maybe  not  so  much. When  I  was  first  diagnosed,  I  went  a  lot. Kind  of  I  went  online, I  went  on  resources  to  try  to  figure  out, and  those  experience  didn't  necessarily  match  mine. So  I've  had  to  learn  what  IBD  means to  me  and  what  having  Crohn's  disease  means  to  me. I  was  really  unwell.  I  had  a  lot  of  kind  of  pain. I  think  pain  was  my  main  symptom  that  started. Also,  just  kind  of  being  a  woman. A  lot  of  times  that  gets  manifested  in  other  places. They  think  that  it's,  you  know,  maybe  to do  with  my  ovaries  or  something  like  that. Further  down  the  line  was  when my  more  kind  of  IBD  typical  symptoms  came. I  was  going  to  the  toilet  a  lot. Again,  I  thought  I  was  just  unwell, so  I  was  like  trying  to  sweat  things  out, going  to  the  gym,  which  made  it  worse. And  then  by  the  time  I  was  diagnosed, I  was  admitted  to  hospital  through  my  GP, and  they  did  a  colonoscopy on  the  Sunday  that  they  thought, well,  you  probably  won't  need  this. But  that's  when  they  found  out  that  I had  cros  because  they  said  I  was  too well  looking  and  too  jokey  to  be  diseased. So  this  morning,  we're  doing  an  endoscopy  list. So  it's  a  list  of the  patients  that  are  part  of  our  music  study. As  part  of  that,  we  do  an  endoscopy at  the  start  when  they  end  of  the  study, and  then  a  repeat  endoscopy  around  six  months. This  is  the  kind  of  controller  that  we  use, and  we  insert  the  thin  flexible  tube into  the  back  passage  of the  patients  who's  lying  on  the  bed. And  then  essentially  we  manoeuvre  that round  the  colon  to  have  a  look  around  the  whole  colon, and  it  allows  us  to  take  biopsy  samples  as  well. So  essentially,  these  are  the  endoscopes  we're  doing today  that  are  the  follow  up  endoscopies. So  we  hope  that  things  have improved  and  patients  have  achieved  the  causal  healing. I  couldn't  I  couldn't  at  points, because  the  pain  was  so  bad, and  obviously  going  to  the  toilet  as  well. I  couldn't  go  into  uni. I  found  it  really  hard  to  go  into  work. Just  trying  to  leave  the  house, it  becomes  quite  isolating. I  think  with  IBD,  people  firstly, I  think  they  think  that  you've  pronounced  IBS  wrong. So  they  tend  to  think  that  you're  just maybe  you  have  anxiety and  that  you're  just  going  to  the  toilet. And  I  don't  think  a  lot  of  people  know  the  kind of  the  seriousness  of  IBD  and,  like, how  it  can  vary  between  people  because  I  think  you can  know  somebody  with  IBD  that  has  quite  mild  IBD, and  then  you  can  know  somebody  that  has quite  severe  presentations  of  symptoms, and,  like,  you  know, they  have  a  really  horrible  time  of  it. My  diagnosis  was  definitely overshadowed  by  the  fact  that  I  was  a  woman. A  lot  of  things  were  kind  of interpreted  as  like  gynaecological  issues. When  I  started  saying,  you  know, I  am  going  to  the  toilet  quite  a  lot, it  was  then  kind  of  well  you're probably  pregnant  and  those  kind  of  things. So  I  think  that  kind  of  spurred  me  on to  look  at  gender  and IBD  in  my  medical  anthropology  masters. Because  when  I  did  my  masters  and started  kind  of  engaging  in  research  that  way, it  really  was  just  to  understand  my  condition  more  and to  understand  the  kind  of  treatment  options, the  support  available  to  me,  also, just  what  was  going  on  in  the  field, so  that  I  could  understand  what different  medications  do  and what  they  might  do  to  me  and  think, like,  that's  another  big  thing  is,  like, people's  variation  and  experiences. So  yeah,  just  to  kind  of  expand  my  knowledge  as  well. I'm  Duncan  Roford. I'm  training  to  be a  general  surgeon  and  doing  a  PhD  with  doctor  Gosh. Yeah.  Well,  I  suppose  for  me, what  I'm  trying  to  do  is  to  conduct  a  PhD  that  allows my  knowledge  and  skills  to  come  back  and  to benefit  my  patients  in  the  clinical  sphere. So  with  this  PhD, I'm  looking  at  inflammatory  disease, and  I'm  trying  to  bring  that  knowledge  and  skills  back  to hopefully  introduce  new  treatments for  people  with  inflammatory  bowel  disease. So  at  the  moment,  I  am  looking  at stem  cell  cultures  that  we  have  grown  from taking  biopsies  of  people's  guts. The  cells  that  we're  growing, looking  at  how  they're expanding  and  whether  they  need  to  be  broken  up so  they  can  grow  more  the  idea  is that  the  more  that we  grow  and  they  can  grow  indefinitely, that  we  can  do  more  experiments and  we  can  look  at  more  readouts  and  samples. So  I'm  trained  to  be  a  general  surgeon, and  the  kind  subspecialty  aspect of  that  is  I'm  interested  in  colorectal  surgery, which  is  in  essence, surgery  on  your  bowels  or  guts. In  my  PhD,  I'm  taking  samples  of  the  gut  lining and  isolating  the  stem  cells and  growing  them  as  mini  guts  on  a  dish. A  stem  cell  is  a  cell  that  has the  potential  to  grow  into  different  kinds  of  cells. The  gut  lining  in  some  areas, is  one  cell  thick, and  each  segment  of  the  gut  or  crypt  is grown  and  isolated  from  individual  stem  cells that  reside  at  the  bottom  of  the  crypt. The  gut  is  a  very  active  organ and  the  whole  lining  of the  gut  replaces  itself  every  three  to  four  days. Our  idea  is  to  make  this  into  a  more  realistic  model. So  we're  using  human  tissue. We  want  to  use  that  to understand  what  makes  people's  stem  cells, people  with  inflammatory  balses, what  makes  their  stem  cells different  and  to  study  that  in  more  detail. My  name  is  Rebecca  Hall. I  am  a  clinical  research  hello  working  in  the  lab, and  that  includes  work in  clinical  trials  and  also  in  the  lab. I  am  taking  patients and  information  that  we  gather  from those  patients  in  our  studies, and  then  doing  further  work  on looking  at  a  certain  immune  and inflammatory  pathway  called  the  sting  pathway and  also  doing  some  work  on  patient  well  being, which  is  quite  a  novel  and  exciting  piece  of  work. Well  being,  I  suppose  is quite  a  broad  term,  but  very  simplistically, it  is  essentially  asking  about  quality  of life  has  a  patient  experience,  is  it? So  we're  not  looking  at  our  sort of  clinical  measures  of how  a  patient  has  responded  to  treatment. We're  asking  them,  do  they  feel  better? What  are  their  symptoms  like,  how does  this  impact  on  their  day  to day  life  and  taking  scores from  all  of  these  questions  and  then  trying  to  use that  as  a  way  to  measure  how a  patient  has  responded  to  treatment,  if  you  like. Well  being,  I  think  is  important, and  it's  probably  something  that  hasn't necessarily  been  the  focus of  a  lot  of  scientific  research. It's  obviously  something  that's great  interest  and  importance  to  patients themselves  because  it  directly links  into  how  they  are  feeling, and  asks  them  directly  how  they feel  that  they  have  responded  to  a  treatment, whereas  we  very  much just  ask  one  or  two  questions.  Is  this  symptom  better? Is  this  symptom  better  or  your  blood  test  better  and  use that  as  a  way  to  gauge  response  issue. And  then  for  everyone  else. Stage  What  were  the  key  things  that  you  went through  during  when  you're  growing  out  the  crus of  this  work  the  main  important  things  that  you  know, did  you  feel  you  could  communicate  this  to  the  doctors? What  was  first  diagnosis  wasn't zly  sex  so  was  that  f  that  was  put  on? But  as  you  grew  up in  a  clinical  environment  that  makes  a  lot  of  sense. And  you  begin  to  develop an  awareness  I  think  from  a  certain  age  78, you  can  say  you  know  I  do  have social  stays  or  I  do  suffer  from  this  symptoms. And  I  think  you  can  develop  that  ication  with  a doctor  s  you  know,  under  T Okay.  What  do  you define  as  being  well  when  you  were  a  teenager? Well,  as  a  teenager, fed  well  as  I  can  do  mars  do  you  know  I  was  tired. I  can  go  a  lot  of  pain. And  the  fates  of  well  would  be, you  know  what  I  was  less when  I  was  you  were  coming  from  school, exhausted  or  was  a  pain  orthose  days just  you  I  felt  that close  was  really  tied  that's  what  I  say. I  feel  very  well. I'm  Goza  Home.  I'm  a  consultant  gastrotroologist. I  worked  in  the  Western  General  Hospital, and  I  care  for  patients  with cros  and  steplitis  as  my  main  specialty. So  next  week,  we  move  to  our  new  home, the  Institute  of  Repair  and  regeneration. Our  whole  group  is  very  excited  about  it. There  is  some  trepidation  of  moving to  a  new  place  as  you  might  expect. But  there  is  significant  advantages  for  us  to  move. We  are  now  with  many, many  more  like  minded  scientists who  work  in  the  field  of  inflammation. I'm  personally  very  excited  that  we  could  work  with many  more  brilliant  people  to improve  our  work  in  IBD  science. Really  exciting  today. Today  is  our  launch  day, and  we  have  a  meeting  symposium  that celebrates  more  than  200  researchers coming  into  a  new  building, the  Institute  of  repair  and  regeneration. It's  really  one  of  the  best  centres  in  the  world, and  we're  right  at  the  forefront  of  scientific  knowledge. We're  doing  a  lot  of  exciting  work, many,  many  different  angles  into  studying  inflammation. And  so  all  the  research  that  we're  doing  on  our  patients, we  translated  to  the  lab, and  it's  all  here  in  our  building  today,  so  fantastic. Next  week,  we're  moving  to our  new  land  facility,  which  is  here. It  offers  a  huge  potential in  terms  of  the  number  of  people  that  are  here  and the  number  of  specialists  in various  aspects  of  inflammation  and  repair, and  hopefully  that  can  give  us a  new  collective  strength  to  take  our  research  further. I  think  it's,  yeah,  I  think  it's  the  relationship strengthening  the  relationship  between people  who  are  doing  the  research  and, like,  supporting  and  treating  people  with  IBD, and  the  people  who  have  IBD  is  like  the  main  focus. I  think  building  that  relationship  is  so critical  because  that's  not something  that  I  ever  experienced when  I  was  first  diagnosed, and  I  know  now  that,  loads more  people  appreciate  that  having  a  bit  more  of a  relationship  with  the  people  that they've  basically  got  their  hands  in  their  life. So,  yeah, and  then  also  just  being  able  to  guide  research  in the  right  ways  in  the  ways  that  are  going  to positively  impact  people's  lives  with  IBD. That's  not  just  to  do  with your  ulcers  and  your  gut.  Specifically. We  know  that  current  treatments  at the  moment  working  up  to  50%  of  people. And  they  are  all  targeted  at suppressing  or  dampening  the  immune  system. What  we're  looking  at, which  is  a  new  approach  or a  new  angle  is  we're  looking  at  the  ability to  heal  and  regenerate your  own  gut  lining  by  using  stem  cells. And  we  think  of  that,  in  addition  to the  other  current  therapies might  make  a  huge  improvement  to the  quality  of  people's  lives  and treatment  options  for  colitis and  pharmacy  parses  in  general.