I am the mother of a beautiful and wonderful 10 year old little girl named Lindsay who was diagnosed w both PSC and Ulcerative Colitis. I would do anything to help her with her health problems. i am fortunate that I am a stay at home mother and can help her with whatever she needs. I am constantly scouring the internet for new info (this site is my favorite by far!) and finding new doctors with new and different opinions. I am panicked and helpless and frustrated right now because she is feeling so terrible and I cannot help her. I also have a wonderful 12 year old son and loving husband who is the absolute best.
Here is a quick version of what happened to Lindsay
She got very sick with a mono-like virus 4 years ago at age 6. The doctors never really figured out what that illness was, but she missed the entire second half of the school year and has never been the same since. Her liver was affected and a yr later she was diagnosed w an autoimmune liver disease PSC. She was scoped at that time because it tends to go hand in hand w UC but there were no signs of UC. About a yr after that, we took her to NYC for a show and to a restaurant for her bday. My husband and Lindsay ended up getting really sick w food poisoning. His went away, hers never did but got worse and she ended up being diagnosed with UC a little over 2 yrs ago.
One of the questions I am hoping someone can help me with is about headaches.
Is there a connection between headaches and Ulcerative Colitis ???
Lindsay has had a constant daily headache that varies in intensity since she came down with the strange mono-like virus years ago. At first the doctors said the headache was from the virus. Then, when she finally recovered fromt the virus the doctors said it was from the liver problems not functioning correctly. There were no medications for a child w PSC. We found an integrative doctor who tested her for IGg food allergies. When we removed gluten, dairy, soy and egg her liver function suddenly went back to normal and has remained normal since we have kept her on the restricted diet. But her headaches still didnt clear up although they may have improved. The headaches got worse when the UC started so the doctors said it was related to UC. We were afraid to put our young child on any of the medications, so instead we do the SCD diet which is difficult at times but has worked wonders for her. She routinely has nice formed stool 1 -2 times a day except when she gets colds/viruses and if she gets very stressed out. She was slightly anemic which could have caused headache, but that was corrected. I have taken her to many neurologists – no pain relief medications are good for her because they can upset the liver and/or cause diarrhea. They do not even want her to have tylenol or ibuprofin. Does anyone else have any similar headache problem??? What can I do to help her??? We have tried accupuncture, myofacial and homeopathic remedies that haven’t helped. We are about to try biofeedback.
Her headache has been terrible lately – the worst ever. I took her to a new functional dr who wanted to do a stool test to see if she had any bad bacteria in her intestines. This part gets gross – sorry – but when I was taking the stool sample it looked like a nice formed log on the outside, but was shocked to see on the inside there was a lot of blood that I could see kindof swirled inside of it. Lindsay said she didnt realize because there was no blood when she wipes. But I have been looking at all her stool since, and i keep seeing blood swirled in the formed stool. I hear a lot of people with bloody diarrhea but does anyone else have blood in their formed stool??? I am afraid that Lindsay is not doing as well as we thought. We have an upcoming appt w her gastro, who I am sure is going to want to do another scope so I guess we will soon find out.
Please help us – all of your thoughts and ideas would be welcome!
Wanted to pass on a couple of things that have helped Lindsay in case they could help someone else. Definitely rotate some high quality probiotics since you really don’t know which one will work for you best. For Lindsay, during her initial UC flare, she took may probiotics without any noticeable changes. Then she took BioGaia L reuterri and immediately went from 10+ times diarrhea a day to just 2 times in the first day taking it and formed stool the day after. It was an amazing reaction and is a strain of probiotics not usually recommended for uc! Also,boswellia serrata has helped her. She doesn’t always take it except if diarrhea starts creeping in. She only takes as needed. It works great for internal inflammation!
written by Lynn
submitted in the colitis venting area