I am a mother to 3 wonderful children and I love them with all my heart. My son has suffered with ulcerative colitis since he was 16 and is now 22. We live in Sydney
My Son’s Story and His Ulcerative Colitis
I have been looking at this site since the beginning of this year and it has been my strength to read the wonderful stories and learn more about diet and other supplements to treat ulcerative colitis.
My son was originally diagnosed with proctitis and we were told that he is lucky as this will be cleared up with the enema which was prescribed by his GI (enema being salofalk). Prior to being diagnosed my son’s GP ordered blood tests, which came back as perfect, including his platelet count at 357,000. The first week after starting to use the enema, he started to bleed more and bowel movements increased and kept visiting his GI for help. He suggested to add Vsl #3 and try granules as well. His symptoms were getting worse and he had a couple of huge bruises in his arm. Blood tests ordered and all of a sudden he has a platelet count of 6000 and is anaemic. We were booked into a haematologist by lunchtime that day and hence began a year long struggle with his platelets, including high doses of prednisone and endless discussions to have his spleen removed, which, thank goodness I was in charge in those days and would not allow it unless it was the only option left. Eventually, he went into remission with ITP, with the help of mabthera. Colitis symptoms improved when he eliminated dairy and gluten from his diet and whenever he accidentally has either if these his symptoms increase.
He hasn’t suffered with very much pain but his bowel motions increased, diahrea, blood (lots) and most days he would go about 20 times. This happened when pentasa was added. I believe he reacted to mesalamine and developed ITP and his symptoms were exasperated by this drug.
This year he had another colonoscopy and colitis had spread to 75% if his colon and was prescribed prednisone, double doses pentasa and 6 mp. I was horrified and there was nothing I could do to stop this cocktail of meds as my son being a 1st year medic al student would not listen to me. But he did agree to start taking Bev’s supplements l glutamine etc and decided to refuse the prednisone and 1st week into taking 6 mp his blood test showed his levels (I think creatinine) were very close to renal failure and was told to stop taking he pentasa immediately! doctor said the damage to his kidneys would have been irreparable. About 2 weeks in he started to have formed bm, minimal blood, mucus disappeared and was well in his way t a normal life again. He is on 50mg 6 mp but started on 75 mp which blood results showed he has trouble metabolising it (always something with medication for him).
About 3 months ago he stopped the supplements and for the last month he has had mild colitis symptoms, 1-2 bm, mucus. Last week he went back onto Bev’s supplements and symptoms are back to normal, except for some mucus, which I know will go in time. I believe eliminating gluten and dairy was an important step in helping I’m and I believe mesalamine was a disaster for him and this drug should be monitored more closely in patients as there are some serious side effects as in my son’s case ITP, exasterbation of colitis and on his way to rebal failure (which was thankfully picked during a routine blood test for 6 mp). I do not like 6 mp as he seems to have problems with these drugs p, but at the only doctors visit i was allowed to go to today, the GI said he will be on it forever. Also, doctor said FMT clinical trials are starting in Melbourne and Sydney for ulcerative colitis. Prof Barody clinic is the only clinic to perform FMT’s here and I have booked my son to see him next May – currently a year waiting list!
Thank you, Adam for your wonderful site and I hope that this story will help others and make them aware that side effects do happen from the medications and regular blood tests are very important. Sorry for the typos,!
written by Mary