The first post is about my partner’s illness, pancolitis, a severe form of ulcerative colitis. Those who have heard of it often liken it to severe diarrhoea, for most sufferers it is far different. She is currently in the process of having a series of major surgery to remove her bowel, colon & rectum.
It is a variable illness, sometimes medication helps, sometimes it doesn’t. The medication itself has many short and long term side effects. Sometimes it has to be withdrawn or reduced because of damage to other organs or dangerous lowering of white blood cell levels. The medication also means she has no immune system and catches other diseases very easily (this has recently included shingles, gastroenteritis, eczema, copious mouth ulcers, abscesses in addition to frequent colds and so on).
(even the most minor) Stress is a major physical trigger of her disease. The enormous amount of stress caused by DWP and ATOS negligence has been devastating for her.
Below I will list the main symptoms of her disease and also the main medication:-
My partner is usually in constant pain. This is sometimes alleviated by codeine. however regular use of this makes her not able to function on a day-to-day basis and it is addictive – this has recently been doubled in strength. Whilst it alleviates the pain, it is not good for her intestines on a regular basis. We therefore try to alternate its usage and non usage.
She has ulcers along almost the whole extent of her large bowel. This leads to poor continence. This makes her abdomen painful. This makes movement difficult at times. Triggers such as stress and anything but a very basic diet (which sometimes leads to malnourishment) cause the ulcers to swell, bleed and release pus which obviously increases the pain and decreases continence.
My partner defecates often. This is on average every 2 hours. This is often with only a few seconds notice which means she is often incontinent. Depending on how her illness is being controlled, this is at least liquid faeces (she has not had a regular bowel movement in 5 years) and often contains blood, pus and bowel lining.
Following periods of incontinence she is sometimes not able to look after herself as she develops shivers, is extremely fatigued and sometimes loses the ability to walk (to me, the symptoms seem similar to those who are in physical shock).
At night, her continence issues are worse as she is medicated and also due to sleep, doesn’t realise she needs the toilet. This means she often needs help with toiletting, self cleaning and bed cleaning.
She is very unsteady on her feet. She had occasional falls, finds it difficult to stand for periods of time. This makes it difficult to perform daily activities. Sometimes she can do some activities, sometimes she can’t get up.
She is often anaemic due to poor nutrition and losing blood rectally. She is unable to take oral iron due to her stomach condition. This results in increased severe fatigue.
Her medication at present includes:-
Infliximab: 5 hour infusions every 2-4 weeks at hospital. This means she has to be taken to hospital regularly and it takes a while to recover from this treatment each time.
Aziothiaprine: This attempts to limit swelling of her intestinal ulcers. It has severe side effects such as suppressing the immune system, lowering white blood cells to dangerous levels, affecting the liver and bone density. It has a long lead in and out – it often needs to be altered in dosage due to side effects which make it hard to keep track of and means her illness fluctuates even more than normal.
Pentasa Granules: A milder drug to supplement the Aziothiaprine.
Pentasa Suppositories: A milder drug to supplement the Aziothiaprine.
Pentasa Enemas: This is administered daily to my partner and she is required to lay motionless for around 2-3 hours to prevent it being expelled early.
IV Steroids: Administered every 2-4 weeks at present. These make my partner bloated, feel unable to function properly and have effects on her bone density. (It the past she has taken several courses of oral steroids too, but not at present).
Codeine: To lessen her pain. She often tries not to take this, preferring pain to the inability to focus and cope with day-to-day life and adversely affect her bowels. However the pain is often too great and she has to take them.
IV Fluids: Administered every 2-4 weeks at present.
Anti-depressants: Due to her illness and the devastating effect it has on her life (losing her career, being incontinent, not able to cope or often not able to look after herself), she has become very depressed. She has been assessed as requiring psychotherapy but the hospital psychotherapist has said that she is too physically ill and the process may also make her physical illness worse.
Steroid enemas: to alleviate pain in her anus, she takes a steroid enema.
IV Iron:- Due to her inability to eat many nutritional foods and that she loses blood rectally, she often had iron deficiency. She needs infusions of this at the hospital as her digestive system cannot digest iron (and worsens her colitis)