Coping with Chronic Intestinal Pseudo-obstruction (CIP) in particular Mesenteric Plexitis
On reflection it all began in 1969 when Diane presented to her GP on more than one occasion with repeated episodes of colicky abdominal pain. A barium study revealed no abnormalities. Despite repeated episodes, one GP suggested that Diane may benefit from a psychiatric referral!
1974 Diane was admitted to Fazakerly Hospital, Liverpool and underwent two laparotomies, the second of which concluded that Diane had acute Crohn’s disease. After a lengthy spell (3 months) in hospital, Diane was finally discharged and her subsequent recovery took several months. As result of her operations and illness it was found that Diane had problems with absorption and monthly vitamin B12 injections were prescribed.
For the next 30 years Diane experienced very good health, rarely suffering from a cold even. Diane enjoyed a full life, she returned to her nursing career which she so loved and enjoyed several holidays abroad with her husband Terry.
2003 Diane was diagnosed with type 2 diabetes which initially was treated with metformin but was subsequently managed successfully by diet alone. However it was also the year that saw Diane collapse and be admitted to hospital with severe abdominal pain, which she recognised as the same pain she had experienced all those years ago. An abdominal x-ray revealed small bowel obstruction. After 24/48hours of conservative treatment the symptoms had subsided and Diane was gradually allowed to start eating and drinking again.
Sadly this marked the long process of reaching a diagnosis of CIP. Over the next 15 years Diane suffered repeated attacks and admissions into hospital, these were made all the more stressful by the dismissive attitudes of some members of the medical profession. A further two laparotomies followed one of which being a hemicolectomy. The attacks began to increase in severity and frequency. Early on in the disease process, Diane would be able to recognise the start of an attack and get to the emergency department in due course. As the condition progressed the attacks would present very quickly and there was no alternative but to call for an ambulance. On admission Diane would require oxygen, IV fluids and pain relief; however her episodes became so severe that her condition would deteriorate rapidly causing her to have a vasovagal attack and lose consciousness. She also experienced severe gastric loss due to simultaneous episodes of vomiting and diarrhoea. Again abdominal x-rays and CT scans would show nothing more than small bowel obstruction which would resolve after a few days of conservative management.
By now this was having a massive impact on Diane and her family. She and her husband were no longer able to enjoy a carefree existence The attacks were unpredictable; Diane and Terry no longer had the confidence to travel and be more than 30 minutes away from their local hospital and from clinicians who knew of her.
2015 saw a dramatic increase in frequency and severity of episodes Finally a diagnosis of Pan-enteric Visceral Neuropathy (Mesenteric Plexitis) was reached.
Diane was given an admissions letter and alert system detailing her condition and the treatment required for when she presented to the emergency department by her doctor. This “fast-pass” letter became crucial in negotiating her passage through a busy emergency department. A steroid drug regime and dietary advice successfully brought the plexitis under control. For the next eighteen months Diane enjoyed a good quality of life; she and her husband along with their daughters celebrated their golden wedding anniversary, she took up art classes and enjoyed meeting the “girls” for lunch. Everyone began to relax a little.
Spring 2017 brought an unfortunate turn of events and the next six months saw a variety of complications. The impact on Diane and her family was devastating and although we all tried to remain positive, events took their toll and sadly Diane passed away peacefully on 23rd December 2017.
The one thing that Diane and, her family were absolutely determined about was that more research should be done into the nature and cause of this life limiting condition. That information should be “out there” for GP’s, surgical teams, junior doctors and all health care professionals. Sadly a lot of the stresses that Diane and her family experienced were in part due to the attitudes of some members of the medical profession and their reluctance to consider a diagnosis unknown to them or to seek help from another source.
‘We fully accept that at the moment this is a condition that cannot be cured. But, it can be managed successfully and patients can enjoy a better quality of life. It needs attitudes to change and early referral to an appropriate nutrition team. Unfortunately there are many patients with complex chronic conditions who will no doubt require repeated admissions into hospital over the course of their lives. A “fast-pass” letter and alert system as instigated by Diane’s doctor should be considered for this category of patients.’
As told by Terence, Diane’s husband, and daughters. The Stidston family and friends have supported Guts UK’s research programme with donations inspired by Diane. They also helped review the latest medical update of our information into Chronic Intestinal Pseudo-obstruction which can be found on Guts UK’s website or call 0207 486 0341 to be sent a copy in the post.