Can we agree that the “flare up” really sucks???
Gustavo had a fever last Monday, took him to the doctors and she said it was probably a virus. Well the fever stayed until Wednesday, took him back to the doctors and she couldn’t really find any apparent infection (throat, ears, lungs all clear, and strep throat test negative). On Wednesday afternoon the fever spiked to 105.1, yes that high. So I took him to the hospital. After many tests, ultrasounds, xrays. The doctor said it was a flare up from his UC. His hemoglobins were very low, and toxins very high. They gave him antibiotics to fight the infection. Put him back on steroids. It was 5 long days at the hospital. First days little munchkin only complained about his bottle and that he wanted to eat some rice and beans… what a champ, so proud of him.
Whoever had flare ups before, do they happen often? I’m not ready to go through this any time soon.
Hi PSC Mommy
My dad had UC and PSC and had huge problems with flare ups
- his were mainly gastrointestinal reactions rather than fevers tho. He had lost around 30 kgs from lack of proper food retention. He finally found a liver dietitian who cracked the problem for him (after flare ups consistently for 10 years). Apparently people with UC and other GI issues are very susceptible to even small amounts of listeria infection. Turned out this changed everything for him virtually overnight. It was tedious (e.g. rejecting grapes that have even small cuts in the skin) but had big improvements. Unbeknown to us the PSC was in its very final stages so he while he started to gain weight and the flare ups stopped - his liver failed. That aside - I’d be tempted to have a look at trying to wipe out any possibility of listeria in his food - worth a try maybe? Hope he’s doing better
Tough question about how often flare ups happen. UC affects everyone differently. With me, I had UC from Nov. 2005 to Dec. 2006 and was never able to get it in remission. While I had a boatload of diarrhea, that was the only real symptom, no pain, no fever....I realize now that I was very lucky, even though I did not feel lucky at the time!
Some people can have no symptoms for many years.
After having UC for 45 years I finally went to a nutritionist and she stepped me through a thorough elimination diet to find the foods that irritate my gut. The process took a month or two, and I tested everything carefully. Ultimately I found that there are a series of things that set me off: most sugars (monosaccharides such as fruit and honey are okay, they're "pre-digested") and starches are the main culprits, but there are others: tomatoes, eggplants, green beans, garlic, caffeine, some seeds like quinoa and millet, and probably others that I'm forgetting right now. Sugars and starches were a surprise to me, I would never have thought they could cause digestive problems.
After I sorted this out for myself, my nutritionist said that it was pretty common in her practice to see this pattern in people with UC. She mentioned the the Specific Carbohydrate Diet as a diet that works for many people with UC, and since then I've met others who have found that it works for them too. However, she emphasized that what matters is not whether the a food is listed as legal or illegal on the SCD website, but whether my system tolerates it.
Interestingly, after I had settled in to that diet and had some success, one of the tweaks we made that helped me a lot was to add daily fiber, specifically a couple of TBSPs chia seed mixed into juice or water. It is a fiber that has gelatinous properties that help food "slide through". Psyllium also has that gelatinous character. Yucky to drink/eat after is has set up, but really okay when mixed in cold juice and drunk quickly.
This didn't render my digestion perfect in any way, but my UC is under pretty good control.
Gustavo is a picky eater. He does eat rice and beans (not canned) very well. Eat meats any kind, but I avoid giving pork. Vegetables, potato only. As fruits goes he eats grapes, apples and strawberry. He eats bread, cookies, cereal, cheese, yogurt. Milk he drinks lactaid, bc the last biopsy showed intolerance. My GI, the pediatrician, hematologist all said that he doesn’t need a diet, because he eats so well the homemade food and rarely eats junk food.
as far as symptoms goes, he has a bloody stool like once every two or three weeks and his belly is a little extended. Other than that no pain, no diahrrea, no nausea, no vomit.
Going back to the GI on Tuesday. Going to ask about a diet. And hopefully Gustavo can recover quickly so he can get the liver biopsy done.
Hi! I hope your son is doing better. My daughter Lindsay, who was diagnosed w PSC a year earlier, got strep throat and was given antibiotics for it. Then the diarrhea came and didn't stop for months and was finally diagnosed w UC. The integrative dr that we went to later thinks that the antibiotics disrupted her intestinal flora and spurred on the colitis. The medication we tried didn't help her. What did help was the Specific Carb diet .. is difficult for anyone, especially a child but they can do it. I follow the diet also to support her. Good nutrition always helpls. Also very important is probiotics and getting the good flora back in to help fight the diarrhea and bloody stool. We tried so so many until we found one that helped her within 2 days... the diarrhea went down from 7 times a day to once a day. Then within a week Lindsay had normal stool. It is a miracle! It is safe for children, you can get in chewables (that taste good) and is called the Lactobacillus Reuteri strain. I prefer the brand BioGaia which I have to order. But sometimes when I run out I use Fleet pedia lax probiotic yums that I can get in CVS. I give my 8 year old daughter 2 in morning and 2 in night. The probiotics that work for one person may not be as effective in someone else, you will have to experiment and see which one works for your son. Also want to mention that I had my daughter tested for IgG allergies, which showed she had sensitivities to gluten, soy, dairy and egg. When I removed them from her diet, all her liver bloodwork went to normal and has remained normal for over a year. I would definitely recommend having your son tested. He is so young to have to go through all of this -- good luck!
Dear PSC Mommy,
How old is your son? My daughter is seven year old. She had a horrible flare-up in January that lasted three weeks. I was a wreck, but it was this support group that helped me deal with it. When I did finally see my daughter's specialists, they explained what people on her had assured me. That is to say that flares can last any amount of time and two to three weeks is not as dire as I thought. Although when it is happening it breaks your heart. My daughter usually starts with the fever and then everything goes pear-shaped. I even had her on sulfasalazine, ursdiol, predisone, enalapril and imuran and still she had a long flare-up. When I said to the specialists that I thought the medication would have prevented it, they said nothing can really prevent it. That shocked me, but I am sharing so you are prepared and don't go through what I did. The medication just manages the symptoms.
Just pray, like we all do that they don't suffer and that a cure is found sooner rather than later. Do as much research as you can and do the best you can. That is all that all of us can do.
Take care for now.
Thank you for the reply.
thank God Gustavo’s flared up only lasted like a week, actually less than that bc it all started on a Monday, and by Friday when he was put back on the Prednisolone he was doing much better.
he’s 5 years old. He currently he’s on Ursodiol, Allopurinol, Mercaptopurine and the Prednisolone. Going to see his GI tomorrow.
Dear PSC Mommy,
How old is your son? My daughter is seven year old. She had a horrible flare-up in January that lasted three weeks. I was a wreck, but it was this support group that helped me deal with it. When I did finally see my daughter’s specialists, they explained what people on her had assured me. That is to say that flares can last any amount of time and two to three weeks is not as dire as I thought. Although when it is happening it breaks your heart. My daughter usually starts with the fever and then everything goes pear-shaped. I even had her on sulfasalazine, ursdiol, predisone, enalapril and imuran and still she had a long flare-up. When I said to the specialists that I thought the medication would have prevented it, they said nothing can really prevent it. That shocked me, but I am sharing so you are prepared and don’t go through what I did. The medication just manages the symptoms.
Just pray, like we all do that they don’t suffer and that a cure is found sooner rather than later. Do as much research as you can and do the best you can. That is all that all of us can do.
Take care for now.
Dear PSC Mommy,
I hope all goes well tomorrow. My daughter was on Prednisolone in the past too. Please keep us updated.
Take care for now.