First of all, I apologize for the lengthy post. I have viewed many things on the forum since my son was diagnosed almost two years ago, but have never posted. I would like some feedback regarding all that has gone on in the past couple of months regarding my son's IBD, specifically if anyone on the forum has had similar side effects from Flagyl, methotrexate and Remicade.
I will explain in greater detail below, but I am concerned with blurry vision (started a couple of days ago), and pain when urinating (started a couple of days ago as well). In addition, his stool frequency which for the past week had been down to 2-3 times per day, is back up to at least 10, and has now reverted back to mainly blood, with no solid at all. He did eat some beef and gravy the night before all this happened, so we thought the blood and diarrhea might have been a reaction to what he ate, but it has progressively gotten worse.
Here's the background: My son was diagnosed with Crohn's in February, 2012. Even though he had lots of bloody diarrhea at the time, once the endoscopy and colonscopy were done he was diagnosed with an esophageal ulcer and mild inflammatory disease. He was initially put on Prednisone, Asacol and Nexium, then weaned off the Prednisone and until November, 2013, his disease was controlled on 1 Nexium 20 mg one per day, and two Asacol EC 400 mg, twice a day.
In early November, my son started complaining of extreme abdominal pain. He described it as gas pain, but as very gut wrenching pain. He has a high tolerance for pain, and he was having trouble sitting in school it was hurting so bad. Eventually, he began to have blood in his stool, but it still wasn't diarrhea.
I was keeping in touch with his gastroenterologist via email regarding his symptoms. He had lab work done the second week of November, and all the IBD labs were normal, but it turned out he had C Diff. At this point, he still was having no symptoms other than the extreme pain and blood in his stool. He was put on Flagyl 500 mg 3 times a day for 14 days. Coincidentally, the day he started the Flagyl his bowel movements changed from soft form to complete bloody diarrhea,10-15 times per day. He stayed on the Flagyl for several days with no improvement, so he was changed to Vancomycin and took that for 13 more days (still no improvement). In the interim, we went to the gastro's office, and more labs were done. All IBD labs were still normal, so we went back home to wait out the C diff. At that time, he was prescribed Prednisone and also another antibiotic for the C diff, Alinia. He took one day's worth of Prednisone and his stools started to form, but once he started the Alinia, it was back to complete bloody bowel movements, mostly bloody liquid, not even diarrheal consistency.
Finally, later in the week, after no improvement, we took him to the emergency room. He was admitted for over two weeks over the Christmas holidays. While in the hospital he had to prep for a colonoscopy, which seemed to set him back even further. His colon was so inflamed they did not do biopsies because they were afraid they would perforate his colon. They had also planned to place a pill cam during the scopes but he was so inflamed they didn't place it. He also had an endoscopy and the biopsies taken during the endoscopy were normal.
Once the scopes were done, now the consensus in the practice where he is seen, seems to be that he has ulcerative colitis. But of course, that is not known for sure until he is well enough to have the pill cam.
While in the hospital he was on IV steroids, IV Flagyl, had one Remicade infusion, one methotrexate injection, TPN, and Ultram for pain.
His IBD labs never showed anything abnormal until after he had been in the hospital for several days, and they still were not very high. Sorry I don't have the lab values. As additional information, he tested negative for c diff after we were in the hospital for a couple of days.
When he was finally discharged, he was put on Remicade (second infusion last week); he has to inject himself once per week with 25 mg Methotrexate; he was put on oral Flagyl 500 mg two times per day; Prednisone 40 mg. per day; folvite (folic acid) and Culturelle. Also were prescribed Levsin as needed, but hasn't taken it too often, says it doesn't help the pain.
For the last week, things seemed to be improving, but he has relapsed the last couple of days. First of all, his bowel movements have increased in frequency and less solidity (as I said earlier in my post, he had eaten some beef and gravy and we thought that didn't agree with him). But he has some other symptoms as well. A couple of days his eyes swelled almost shut, and they were burning and itching. I took him to the ophthalmologist, and she didn't think his symptoms were IBD related. She said he had viral conjunctivitis, but said in people who are immunosuppressed, it can progress to a bacterial infection, so she gave me a prescription for Tobramycin to use if he didn't get better. I didn't fill the prescription at first because I thought we might not need it, but my son woke up during the night after his appointment and said his eyes were hurting badly and they looked terrible, so we went immediately to the 24 hour pharmacy and got the prescription. His eyes still look very inflamed and his vision is blurry.
Secondly, he has now started having terrible pain when he urinates.
We took him to the pediatrician yesterday and they did check him for a urinary tract infection, which showed negative, but they were going to culture it as well.
We did contact the gastroenterologist regarding the latest symptoms, but he doesn't think they are related to the IBD.
My concern is that some of these symptoms are medicine related. Some of the information in the pamphlets that come with the methotrexate state contact your doctor if your child has pain while passing urine (he does), and the info with the Flagyl states it can cause eye pain, and the prednisone leaflet states contact your doctor if you get blurry vision (which he has) while on it.
I am just grasping straws here, because he is now on so much medication, that it is hard to know whether the symptoms are isolated or if they are side effects from all of the medicines he is on.
Ironically, right before he started having the stomach pain in November, he told me he was feeling the best he had felt since being diagnosed. He had been weightlifting and had gotten up to 170 lbs., then he lost 30 since having the C diff and this flare.
Thanks for reading this and for any feedback that is offered. It is hard to see your child suffer and not be able to do anything to help.
I will explain in greater detail below, but I am concerned with blurry vision (started a couple of days ago), and pain when urinating (started a couple of days ago as well). In addition, his stool frequency which for the past week had been down to 2-3 times per day, is back up to at least 10, and has now reverted back to mainly blood, with no solid at all. He did eat some beef and gravy the night before all this happened, so we thought the blood and diarrhea might have been a reaction to what he ate, but it has progressively gotten worse.
Here's the background: My son was diagnosed with Crohn's in February, 2012. Even though he had lots of bloody diarrhea at the time, once the endoscopy and colonscopy were done he was diagnosed with an esophageal ulcer and mild inflammatory disease. He was initially put on Prednisone, Asacol and Nexium, then weaned off the Prednisone and until November, 2013, his disease was controlled on 1 Nexium 20 mg one per day, and two Asacol EC 400 mg, twice a day.
In early November, my son started complaining of extreme abdominal pain. He described it as gas pain, but as very gut wrenching pain. He has a high tolerance for pain, and he was having trouble sitting in school it was hurting so bad. Eventually, he began to have blood in his stool, but it still wasn't diarrhea.
I was keeping in touch with his gastroenterologist via email regarding his symptoms. He had lab work done the second week of November, and all the IBD labs were normal, but it turned out he had C Diff. At this point, he still was having no symptoms other than the extreme pain and blood in his stool. He was put on Flagyl 500 mg 3 times a day for 14 days. Coincidentally, the day he started the Flagyl his bowel movements changed from soft form to complete bloody diarrhea,10-15 times per day. He stayed on the Flagyl for several days with no improvement, so he was changed to Vancomycin and took that for 13 more days (still no improvement). In the interim, we went to the gastro's office, and more labs were done. All IBD labs were still normal, so we went back home to wait out the C diff. At that time, he was prescribed Prednisone and also another antibiotic for the C diff, Alinia. He took one day's worth of Prednisone and his stools started to form, but once he started the Alinia, it was back to complete bloody bowel movements, mostly bloody liquid, not even diarrheal consistency.
Finally, later in the week, after no improvement, we took him to the emergency room. He was admitted for over two weeks over the Christmas holidays. While in the hospital he had to prep for a colonoscopy, which seemed to set him back even further. His colon was so inflamed they did not do biopsies because they were afraid they would perforate his colon. They had also planned to place a pill cam during the scopes but he was so inflamed they didn't place it. He also had an endoscopy and the biopsies taken during the endoscopy were normal.
Once the scopes were done, now the consensus in the practice where he is seen, seems to be that he has ulcerative colitis. But of course, that is not known for sure until he is well enough to have the pill cam.
While in the hospital he was on IV steroids, IV Flagyl, had one Remicade infusion, one methotrexate injection, TPN, and Ultram for pain.
His IBD labs never showed anything abnormal until after he had been in the hospital for several days, and they still were not very high. Sorry I don't have the lab values. As additional information, he tested negative for c diff after we were in the hospital for a couple of days.
When he was finally discharged, he was put on Remicade (second infusion last week); he has to inject himself once per week with 25 mg Methotrexate; he was put on oral Flagyl 500 mg two times per day; Prednisone 40 mg. per day; folvite (folic acid) and Culturelle. Also were prescribed Levsin as needed, but hasn't taken it too often, says it doesn't help the pain.
For the last week, things seemed to be improving, but he has relapsed the last couple of days. First of all, his bowel movements have increased in frequency and less solidity (as I said earlier in my post, he had eaten some beef and gravy and we thought that didn't agree with him). But he has some other symptoms as well. A couple of days his eyes swelled almost shut, and they were burning and itching. I took him to the ophthalmologist, and she didn't think his symptoms were IBD related. She said he had viral conjunctivitis, but said in people who are immunosuppressed, it can progress to a bacterial infection, so she gave me a prescription for Tobramycin to use if he didn't get better. I didn't fill the prescription at first because I thought we might not need it, but my son woke up during the night after his appointment and said his eyes were hurting badly and they looked terrible, so we went immediately to the 24 hour pharmacy and got the prescription. His eyes still look very inflamed and his vision is blurry.
Secondly, he has now started having terrible pain when he urinates.
We took him to the pediatrician yesterday and they did check him for a urinary tract infection, which showed negative, but they were going to culture it as well.
We did contact the gastroenterologist regarding the latest symptoms, but he doesn't think they are related to the IBD.
My concern is that some of these symptoms are medicine related. Some of the information in the pamphlets that come with the methotrexate state contact your doctor if your child has pain while passing urine (he does), and the info with the Flagyl states it can cause eye pain, and the prednisone leaflet states contact your doctor if you get blurry vision (which he has) while on it.
I am just grasping straws here, because he is now on so much medication, that it is hard to know whether the symptoms are isolated or if they are side effects from all of the medicines he is on.
Ironically, right before he started having the stomach pain in November, he told me he was feeling the best he had felt since being diagnosed. He had been weightlifting and had gotten up to 170 lbs., then he lost 30 since having the C diff and this flare.
Thanks for reading this and for any feedback that is offered. It is hard to see your child suffer and not be able to do anything to help.
