Scared mom with lots of questions!

My 13yr old daughter was just diagnosed with ulcerative colitis following a colonoscopy last week. She had been having diarrhea for a few weeks 4-6 times per day, but with no visible blood. She had NO other symptoms.. No pain, no weight loss, no loss of appetite, no fever, still attended school and 2hr swim practice every single day. Her Dr thought the inflammation was severe enough that she needed to be admitted in the hospital for IV steroids. That was Wednesday and it's now Saturday and I think she's getting worse!!! She is now having 8-9 bloody stools a day, and required a blood transfusion because her hemoglobin had dropped. Her Dr pretty much said that if she hasn't shown significant improvement by the 7th day of IV solu medrol, our next step would be Remicade. I have asked him several times about diet and he just says "high protein, low sugar, nothing greasy or spicy." I asked him about the SCD diet or herbal supplements and he told me not to waste my money. Oh, and her c-diff was negative. So my questions are:
Why isn't the solu medrol working? How long does it usually take to respond for a severe flare?
Is it common to start off with Remicade right away or is there anything else that might help her if the steroids aren't?
What should I really be feeding her at this time?
Are there supplements she could be taking now that might help her?
I appreciate ANY help or suggestions!!! Thank you!

Oh and I am so sorry to hear this. It can be managed, not easy but it can be. Try diet of no raw veggies., no dairy, no peels, no honey or HFCs. Rice chicken eggs, potato easy to digest. Probiotics- VSL3 are great!

Tara,
No way I give medical advice, I also am very new to this. My son was diagnosed March this year, 2014. When my son first got this, had his first bad flare, sounds a little like what you are saying. It did get much worse before it got better. He started at 30 mg prednisone, I was about 3 months, and bad,,, same like you transfusions etc..Pred up'd to 60mg. He was literally laying in bed having none stop D or just blood. It was horrible.

2 things. 1) I am no expert on, but Remicade was immediately the idea for my son during this time. It was the hardest thing ever to decide to wait. I was worried, as it's a lifelong treatment and I was so new to all this.. that was a big leap for me to take, yet he was so sick. We waited, and tried oral Prednisone for several weeks along with Mesalamine orally and enemas, I am NOT saying Remicade is not the best choice or won't be at some point, but I agree to wait depending on her symptoms,
2-- Why is anyone talking SCD diet or anything when she is this sick? MY son was eating only food processed food. If she is sick enough to be in the hospital, why is eating any solid food? I do not understand why anyone would be talking not greasy?, not spicy?. being that sick!?.. food processed WHITE rice, pasta, potatoes, bread.. later we added squash, broths, ,,, leading back to solid foods. Once stable! we went into learning about diets. She has to stop eating foods that cause more BM's just for now.
Perhaps I was too freaked out and worried, but I put food to a HALT! Don't get me wrong.. lots of food, but low to no fiber, all processed, learn to add oils for fat content, etc...
Anything they eat has to pass through, bottom line is it should be as LOW FIBER as possible.. for now. Don't worry about long term diet now... imo
I like VSL#3 too

Post Edited (Momhelping) : 11/16/2014 1:25:57 AM (GMT-7)

It never hurts to try different diet variations when she's much better, her diet has to be bland and low in fibre for now. White bread, white rice, bananas, applesauce, little to no sugar, etc. Rememer that doctors are not trained as nitritionosts and they really see very little connection on paper so their ignorance is understandable.

I was diagnosed when I was 18, it was 5 years ago, I was the same, I acted tough even though the pain was really cornering me. I guess, part of it is not wanting to accept this reality. I still struggle with fully accepting it all to this day.

In terms of the supplements and diet specifics, don't stres and don't worry, there will be time to look into probiotics, fish oils, vitamins, etc., so don't lose any sleep over it.

As for remicade, many drugs can and have lost their effect with some people, there are always those cases where the medicine simply stops working, it isn't a reason not to try something out someday. The whole point of remicade is that you've tried everything else with no luck and have decided to go for it, is it possible to get off of it? Yes, it is. Is it possible that weaker drugs will work? Maybe, if the condition's severity lessens then stronger drugs are unnecessary. I know many people who live happily because of bio drugs, and for them, they needed it and had no other choice.

I don't know why your doctor wants to put your daughter on remicade right away. Usually they start with mesalazine drugs. I wouldn't listen to him personally but I don't want influence you either. Perhaps you should also tell your doctor that supplements do work. I have tried almost everything given for ulcerative colitis with mixed results, but eventually they all stopped working. I've managed to put myself in remission with a natural regime. I do not look back.

so sorry you and your daughter are having to deal with this - hope you find some answers here -

welcome -

The colonoscopy and clean-out procedure can be irritating - some people on here have said they flared right after a scope - maybe this is contributing to your daughter seeming worse?

What is she being given to eat in the hospital? I was admitted for a few days after diagnosis and the scope plus the IV prednisone made me ravenous. They brought me cream-of-broccoli soup, pasta with tomato sauce, etc. - and later my Dr. said Oops, sorry, you were supposed to get a bland, low-residue diet!

Hope she improves quickly.

I think your doctor really jumped the gun on this one. I know symptoms aren't always correlated to how bad the inflammation was, but I'm thinking if your daughter's main problem was just mild diarrhea, going to the hospital for IV steroids seems like overkill. I know i'm just some person on the internet, but you may want to consider a more conservative GI given her symptoms. Seems like the doctor's decision has made her much worse. He probably really should've tried mesalamines first to see if that gets things under control, as is the standard protocol. Mesalamines are anti-inflammatory meds that are relatively harmless when taken for long periods of time. They probably would've controlled the diarrhea.

The one thing that I have learned about this disease is that it is very individualistic. What works for me may not work for your daughter. That is not to say that some things are not more universal than others. But it is to say that you have to be very careful what info you choose to follow even from a doctor. Everyone's body handles things differently. For example I had no stop flare from 2007-1012. I took one dose of VSL and had some relief that day. My flare was not cured by any means but I could definitely see a difference with one dose. Some people take it and never see results or take weeks to see results. Some people have to take four packs a day. I was great with one or two. This is just one small example.

I know right now you don't have time for experimentation so you have to go on the best advice you can get. So my best advice is to read everything you can find so that you can make the most informed decision you can make. Also one tip about remicade. It is one biologic that if you go on and you stop it you probably cannot go back on it because you will develop antibodies to it. I think that it is a important fact to keep in mind. Good luck.

I don't know why your doctor wants to wait on the mesalamines. They can absolutely be taken at the same time as steroids.

I live in the Chicago area and have seen a few "top" doctors that everyone recommends and some of them weren't right for me. I found that some -not all - of these doctors know they're considered the best and 1) become stuck in their ways and unwilling to consider anything other than their approach, 2) take on too many patients so they rush through visits and aren't readily available for urgent issues, and 3) don't like to be questioned.

So don't assume your daughter is best served by the doctor everyone recommends. Like how food and medication impacts UC, everyone is different.

I know this can be very overwhelming right now. Whenever i hear a person is hospitalized due to UC, it brings me back to when I was so I can relate to what your daughter is experiencing. The first time I was placed on steroids was when I was hospitalized. I actually started taking them a few days prior to hospitalization orally, but I was too far gone by then for them to do anything and a few days later was hospitalized. I can tell you they did not work on me immediately and I was on a dose of 120mg IV daily. It took close to a week for them to start to do anything. I was slow to respond and I think it is because I was so sick at that point. However, once they started to do their thing, they worked amazingly and helped me get into remission. I wanted to tell you this so that you don't get discouraged just yet. Give it a chance. Your doctor said that her colon was in severe shape so it may take time.

As far as other drugs, I was also on 5ASA (mesalamine), both orally and rectally, prior to and during my hospitalization. I don't know if she was on anything prior to hospitalization that possibly wasn't working?? Doctors have different approaches when a patient is on pred. My GI feels that when on a high dose of pred, I don't need to be on anything else until I start to taper down lower. I am of a differing opinion so I continue to take my mesalamines while on pred (no matter what dose of pred I'm on). I would rather give my body full ammunition to fight the flare. I am sure he has a plan for a maintenance drug that he plans to introduce before your daughter leaves the hospital. They discussed Remicade while I was in the hospital because the pred wasn't instantly working. This is why they are probably discussing it with you. They could also be discussing it because she was on 5ASA's prior to hospitalization and they weren't working??? If the pred doesn't start to work, they need another plan of action. Pred is not a longterm solution. The idea is to take it to repress the immune system and put you in remission then get on another drug to maintain the remission while getting off the pred.

As far as diet. I always do a low residue when in a bad flare. You can google what a low residue diet is. Your daughter will find out what food does or doesn't work for her. Diet never controlled my UC (only drugs do that for me). And honestly, while flaring every single things flies right through me regardless of what it is. But certainly bland food, low fiber food tend to irritate me less than other type of food when my colon is inflamed. Also no dairy when in a bad flare. I have to limit dairy even when in remission. When I was hospitalized, I was off solid food for 3 days. I couldn't tolerate anything at that point. IV fluids first 2 days, then liquids only 3rd day. Then slowly introduced low fiber food. I wouldn't even do veggies yet and when you finally do overcook them.

So to summarize, these are my suggestions:
1. Give the pred time to work.
2. Ask your doctor to give her mesalamines while on pred. See if you can get her to maintain remission on these first. Obviously if this doesn't work your GI will have to go to another drug such as remicade.
3. Try a low residue diet. No veggies, fruit or dairy until things calm down. Introduce foods back in slowly once she feels better. Bland foods are good. Protein is good.
4. Get knowledgeable about the disease.

One more thing, I think it was good your doctor put your daughter in the hospital immediately since she apparently needed a transfusion. However, I'm wondering if she was slightly anemic prior to her UC diagnosis. I was going upwards of 15-20+ bloody bowel movements per day for several months prior to hospitalization and still didn't need a transfusion. My numbers were very close though to needing one. You mentioned she hardly had any blood and is not having that many bowel movements. Either she runs anemic to begin with or was bleeding for awhile prior to hospitalization. Just my opinion, but it is something she needs to watch out for and monitor. Maybe needs to eat higher iron foods in the future.

Oh my! You are probably more of a scared mom than ever after reading these posts!! Your daughter is not going to lose her colon. She didn't even have blood until the dr. Just research and go slow and don't listen to just one dr. Try many things, nothing too drastic! She is young and you can advocate for her.