Good evening,
I am writing this post on behalf of my girlfriend who currently has an undiagnosed inflammatory bowel issue going on. We have been unsuccessful at receiving a diagnosis thus far and I have not been able to find much information.
Writing this with the hope that someone maybe able to help. I'll start from the beginning. She is 29 and has been in great health up until this point. The first week of August she complained of a dull stomach ache accompanied with chest pains. The chest pains went away within a few hours but the stomach ache continued. She brushed it off as maybe being something she ate or contracting some sort of bug. After 4 days it continued and a few canker sores appeared in her mouth. She made an appointment with her primary physician and was told she had a virus. Was directed to rest and take in lots of fluids. After a week passed the sores multiplied all around the inside of her mouth and down her throat making it difficult to eat and drink. She went back to her primary physician and was diverted to our local hospital due to being dehydrated.
Once at the hospital she was hooked up to an IV due to being dehydrated and had basic blood work done. After being examined by the ER doctor, he was pretty confident that it was the coxsackie virus. He stated she needed to try eating more which was almost impossible at this point and continue taking in fluids. I told him I was alarmed that it had been 16 days and getting worse but he seemed confident that she would start to get better within a few days.
Her potassium levels were very low and also stated she needed to eat a banana daily to bring her levels back up. 3 days after the ER visit she continued to get worse. Very little fluid intake, no food intake due to the throat pain, and also began having diarrhea about every 30 minutes. We followed up with her primary care physician who was very alarmed at this point and immediately sent us to a more reputable hospital.
Upon entering the ER, they immediately brought her into triage. They thought it maybe crohns but stated alot of her symptoms are not typical of crohns. They began taking lots of blood to test for anything and everything they could due to being puzzled. They also admitted her to the hospital. They stated the ulcers and lesions in her mouth and throat were very unusual to be crohns. They took a CAT scan that night which revealed inflammation of her entire colon and liver. They wanted to do a colonoscopy and endoscopy procedure but said they could not at this point due to her potassium levels being at a dangerous low. They began administering potassium intravenously but said it would take alot of time due to a slower absorption rate through an IV.
On the third day they were able to do the procedure which revealed ulcers 5 to 6mm in size throughout her intestines and down her throat. There were also smaller ulcers beginning to grow and what seemed to be scarring of older ulcers. They immediately began administering an antibiotic and a steroid intravenously. After a day on them the ulcers in the mouth began to go away. Within 2 days she was able to eat real food again but continued to need to use the bathroom at least once an hour. Meanwhile lots of blood tests were completed testing for crohns markers which came back negative. She was also tested for lime disease and celiac which also were negative.
They then stated she was displaying symptoms of a rare autoimmune disease called buhcets disease in which only 20,000 cases exist in the US. The disease is more prevalent in the middle East, turkey and Japan. They tested her for some of the markers for the disease which were also negative. The main symptoms in which buhcets presents itself are ulcers in the mouth, inflammation of the veins and eye problems. She has no inflammation in her veins and no issues with her eyes.
A few more days passed and she continued to improve. Not drastically but to the point where she had an appetite again, was taking the steroid orally, and also had the IV removed. On day 12 in the hospital she was told that they were not going to be able to diagnose her during the hospitalization and stated they hoped to figure it out with follow up appointments. She discharged home on day 12. She is currently taking a steroid daily, antacid daily and an antibiotic 3 times a week. She has been out of the hospital for 4 days but is not able to resume normal daily activities or return to work. She has constant abdominal pain which comes and goes throughout the day. In the morning it is the worst. She will wake up in agony and says it feels like her stomach acid has built up and has a hard time eating due to the pain. It will eventually dull out a little and will come and go throughout the day. She was told to eat a very low fiber diet for now and told to consume refined flour, sugars, and fruit occasionally. It was recommended that she steer clear of whole grains, nuts, and vegetables.
I'm writing this on her behalf partly in desperation as we have really had no answers at this point. Hoping maybe someone can shed some light on what might be going on or have experienced something similar. I truly believe all of the doctors are doing everything they can to figure it out and help but figured it was worth a shot to reach out as well. Thank you very much for your time.
Matt
I am writing this post on behalf of my girlfriend who currently has an undiagnosed inflammatory bowel issue going on. We have been unsuccessful at receiving a diagnosis thus far and I have not been able to find much information.
Writing this with the hope that someone maybe able to help. I'll start from the beginning. She is 29 and has been in great health up until this point. The first week of August she complained of a dull stomach ache accompanied with chest pains. The chest pains went away within a few hours but the stomach ache continued. She brushed it off as maybe being something she ate or contracting some sort of bug. After 4 days it continued and a few canker sores appeared in her mouth. She made an appointment with her primary physician and was told she had a virus. Was directed to rest and take in lots of fluids. After a week passed the sores multiplied all around the inside of her mouth and down her throat making it difficult to eat and drink. She went back to her primary physician and was diverted to our local hospital due to being dehydrated.
Once at the hospital she was hooked up to an IV due to being dehydrated and had basic blood work done. After being examined by the ER doctor, he was pretty confident that it was the coxsackie virus. He stated she needed to try eating more which was almost impossible at this point and continue taking in fluids. I told him I was alarmed that it had been 16 days and getting worse but he seemed confident that she would start to get better within a few days.
Her potassium levels were very low and also stated she needed to eat a banana daily to bring her levels back up. 3 days after the ER visit she continued to get worse. Very little fluid intake, no food intake due to the throat pain, and also began having diarrhea about every 30 minutes. We followed up with her primary care physician who was very alarmed at this point and immediately sent us to a more reputable hospital.
Upon entering the ER, they immediately brought her into triage. They thought it maybe crohns but stated alot of her symptoms are not typical of crohns. They began taking lots of blood to test for anything and everything they could due to being puzzled. They also admitted her to the hospital. They stated the ulcers and lesions in her mouth and throat were very unusual to be crohns. They took a CAT scan that night which revealed inflammation of her entire colon and liver. They wanted to do a colonoscopy and endoscopy procedure but said they could not at this point due to her potassium levels being at a dangerous low. They began administering potassium intravenously but said it would take alot of time due to a slower absorption rate through an IV.
On the third day they were able to do the procedure which revealed ulcers 5 to 6mm in size throughout her intestines and down her throat. There were also smaller ulcers beginning to grow and what seemed to be scarring of older ulcers. They immediately began administering an antibiotic and a steroid intravenously. After a day on them the ulcers in the mouth began to go away. Within 2 days she was able to eat real food again but continued to need to use the bathroom at least once an hour. Meanwhile lots of blood tests were completed testing for crohns markers which came back negative. She was also tested for lime disease and celiac which also were negative.
They then stated she was displaying symptoms of a rare autoimmune disease called buhcets disease in which only 20,000 cases exist in the US. The disease is more prevalent in the middle East, turkey and Japan. They tested her for some of the markers for the disease which were also negative. The main symptoms in which buhcets presents itself are ulcers in the mouth, inflammation of the veins and eye problems. She has no inflammation in her veins and no issues with her eyes.
A few more days passed and she continued to improve. Not drastically but to the point where she had an appetite again, was taking the steroid orally, and also had the IV removed. On day 12 in the hospital she was told that they were not going to be able to diagnose her during the hospitalization and stated they hoped to figure it out with follow up appointments. She discharged home on day 12. She is currently taking a steroid daily, antacid daily and an antibiotic 3 times a week. She has been out of the hospital for 4 days but is not able to resume normal daily activities or return to work. She has constant abdominal pain which comes and goes throughout the day. In the morning it is the worst. She will wake up in agony and says it feels like her stomach acid has built up and has a hard time eating due to the pain. It will eventually dull out a little and will come and go throughout the day. She was told to eat a very low fiber diet for now and told to consume refined flour, sugars, and fruit occasionally. It was recommended that she steer clear of whole grains, nuts, and vegetables.
I'm writing this on her behalf partly in desperation as we have really had no answers at this point. Hoping maybe someone can shed some light on what might be going on or have experienced something similar. I truly believe all of the doctors are doing everything they can to figure it out and help but figured it was worth a shot to reach out as well. Thank you very much for your time.
Matt
