A man had severe abdominal pain for 20 years for unknown reasons. He went to several hospitals and found that the "culprit" was a rare disease with only dozens of cases in the world. Surgery was his last straw.

Recently, under the careful treatment of Professor Sun Yueming's team from the Department of General Surgery of Jiangsu Provincial People's Hospital, Mr. Wu, who had suffered from the rare disease "Pneumatosis Colitis" for 20 years and whose life was in danger due to severe peritonitis caused by the disease, finally recovered and was discharged from the hospital.

Unexplained severe abdominal pain has tormented Mr. Wu for 20 years. Talking about his experience of being tortured by the disease and being treated, Mr. Wu, 38 years old this year, has a deep memory. He told reporters that the first onset of the disease was when he was 18 years old, around the end of the college entrance examination in 2001. He went out to eat with his classmates. After returning home, he began to have severe abdominal pain and rolled around in pain. At that time, the doctor diagnosed it as acute pancreatitis. On the eve of the operation, experts from Beijing came to consult and said that it was not acute pancreatitis. After being hospitalized for 2 weeks and given antibiotics, the abdominal pain disappeared.

After that, Mr. Wu's condition would flare up every two to three years, especially around the Spring Festival, when winter turns to spring. Each flare-up was mainly characterized by abdominal pain, but after hospitalization and intravenous drip treatment, the symptoms were relieved. At first, Mr. Wu thought he had an upset stomach, so he was very careful when eating, and did not eat seafood such as fish and shrimp, nor did he eat raw and cold foods such as fruits. On the eve of the Spring Festival in 2008, Mr. Wu had severe abdominal pain after a meal again. After examination at the local hospital, it was said that only laparotomy could be performed. During the operation, the doctor said that there was no special abnormality except for a small amount of adhesion in the abdominal cavity. This time, the doctor also removed his appendix. After the operation, the abdominal effusion was drained, and Mr. Wu's condition gradually improved.

But within three months, Mr. Wu had severe abdominal pain again. During this examination, the doctor found that there was a "cloud"-like shadow on the greater omentum of Mr. Wu's right abdomen, which was suspected to be "cellulitis". Just before Mr. Wu was about to undergo surgery again, the "cloud" disappeared. Later, Mr. Wu found that every time he had severe abdominal pain, he would go to the hospital to get anti-inflammatory drugs such as levofloxacin to relieve inflammation.

After visiting many hospitals, he found that the real culprit was the rare "colonic pneumatosis". In 2014, Mr. Wu, who had severe abdominal pain again, came to Shanghai for medical treatment accompanied by his family. In Mr. Wu's own words, this disease had tortured him to death, so he did all the tests that could be done in the Shanghai hospital, including gastroscopy, colonoscopy, capsule endoscopy, etc. Finally, the hospital concluded that Mr. Wu's disease was a very rare "colonic pneumatosis". Due to the extremely small number of patients, there is not even a clear incidence rate.

Although the diagnosis was confirmed, there was still no clear treatment method. The treatment in Shanghai did not alleviate the progression of the disease, which made Mr. Wu and his family very worried. Since then, Mr. Wu's attacks have become more and more frequent, and the symptoms of peritonitis have become more and more severe with each attack. In addition, due to the large doses of antibiotics used for treatment, Mr. Wu also developed drug resistance.

CT images of patients before surgery

Due to the impact of the disease, Mr. Wu, who is 183 cm tall, has reduced his weight from 197 catties to about 140 catties before the operation. Due to repeated attacks of the disease, his work has been hindered and his income has been reduced. In addition, the cumulative medical expenses over the years are about one million, which is a huge financial burden for an ordinary family like Mr. Wu.

In late July 2020, Mr. Wu experienced abdominal pain again. After conservative treatment at a local hospital, his symptoms became increasingly severe, with severe pain and a high fever of 39 degrees for several consecutive days. He also went into septic shock and his life was in danger. His family was very anxious and took Mr. Wu from the local area to the Colorectal Surgery Department of Jiangsu Provincial People's Hospital (First Affiliated Hospital of Nanjing Medical University) by 120 ambulance, and found Professor Sun Yueming, director of the Colorectal Surgery Department, for help.

Professor Sun Yueming (data map)

Too rare! There are only a few dozen cases in the world, and surgery is the last straw. After learning about Mr. Wu's medical history and checking his condition, Professor Sun Yueming immediately admitted Mr. Wu to the hospital and conducted a comprehensive physical examination, blood test, and imaging examination for him. Considering that Mr. Wu suffered from the very rare "colonic pneumatosis", Professor Sun Yueming also organized experts from multiple departments in the hospital to conduct an MDT discussion for him.

Professor Sun Yueming told reporters that the "colonic pneumatosis" suffered by Mr. Wu is also known as colonic pneumatosis or cystic intestinal gas. It is a rare disease characterized by the appearance of multiple gas-containing cysts under the mucosa or serosa of the colon. Most of them occur in the colon below the splenic flexure of the transverse colon, and are more common in the sigmoid colon. Due to the extremely low incidence of the disease, there are only dozens of such cases reported worldwide. The cause and pathogenesis are unclear, the clinical manifestations lack specificity, the diagnosis is very difficult, and the treatment plan is not uniform.

However, considering Mr. Wu's long history of illness, which seriously affects his quality of life, Professor Sun Yueming and other experts in the MDT team unanimously agreed that surgery is the best treatment option for Mr. Wu. However, surgery is also very risky for Mr. Wu. On the one hand, Mr. Wu has a long history of illness and repeated episodes of peritonitis, and the situation in the abdominal cavity is unknown. On the other hand, Mr. Wu has undergone surgery before, and there will be severe adhesions in the abdominal cavity, which makes the operation very difficult.

Professor Sun Yueming during surgery

Although the operation was risky, Professor Sun Yueming decided to help Mr. Wu with the operation in order to save his young life. On August 10, Mr. Wu was pushed into the operating room. During the operation, Professor Sun Yueming found that Mr. Wu's abdominal cavity was just as predicted before the operation. There were severe adhesions in the abdominal cavity, showing "abdominal cocoon sign". The small intestine, large intestine, mesentery, omentum and abdominal wall had completely lost their normal anatomical layers, and separation was very difficult, with the possibility of intestinal damage at any time.

After more than an hour of careful separation, the exploration found that Mr. Wu's entire colon wall was significantly thickened, the intestinal tube was dilated, and there was obvious gas and fluid accumulation. There were multiple cystic tumors protruding on the surface, which met the diagnosis of "colonic gas cyst disease". A complex "total colectomy" was performed on him. The operation lasted 4 hours and ended successfully.

On the second day after the operation, Mr. Wu was able to get out of bed and move around. On the third day after the operation, Mr. Wu's intestinal function began to recover, and he was able to eat semi-liquid foods such as rice porridge and noodles. With the reduction of systemic toxic reactions, Mr. Wu's spirit, physical strength, and appetite have all improved significantly. Two weeks after the operation, Mr. Wu was discharged smoothly. On the eve of discharge, Mr. Wu tightly held Professor Sun Yueming's hand and said: "Today is the most relaxing day I have had in the 20 years since I became ill. Thank you Director Sun and your team of medical staff for giving me a second life, allowing me to walk out of the shadow of "colonic pneumatosis" and rekindling my hope for the future."