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17-y/o just diagnosed yesterday

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Posted 9/26/2012 2:49 PM (GMT 0)
I'm glad you're looking into another GI. I really, really liked my first GI. He'd still be my GI if he hadn't retired and I hadn't moved from WA to NY! He saw me a lot, took loads of time to answer my questions about the different meds and actually let me be involved in deciding what path to take with my meds -- he realized that I'd spent a lot of time researching UC, so had some idea what I was talking about. And he knew that I have a PhD in horticulture, and while that's plants, not medicine, I have the ability to dig up research papers, read them, and reasonably understand them. And you seem to be willing and able to do the same. So I think you need to find a GI who's ok with that and respects that. Good luck in the search for a good GI!
Posted 9/26/2012 3:01 PM (GMT 0)
Good. Keep looking for someone you trust. Don't be afraid to call in favors! Now's the time!
Posted 9/26/2012 4:34 PM (GMT 0)
I hear you with the frustration. Its hard not blaming yourself sometimes. I do it too even thought I know it is not a rational thought and completely not helpful.

I hope he gets into remission soon. We make decisions at the time hoping they are right and there are no adverse situations after. No one can see into the future. Don't second guess your decisions then. You cant undo them even if you tried.

My daughter (turned 12 Sunday) just started Remicade - supposedly the miracle drug from what I read. After 3 days, almost no difference. After now almost 8 months of being near a bathroom & now 3 weeks in the hospital we are really hoping this kicks in soon or the next treatment can come quick.

Keep us posted on the probiotics. We are still on bowel rest and only clear liquid diet still. Am going to inquire when we can start probiotics. It has to be worth something!

Keep your chin up!
Posted 10/10/2012 7:23 PM (GMT 0)
Well, saw new GI last week on Thursday and started him on 40 mg of prednisone daily. I thought at first this helped him, but he's back to his usual...doctor wants to see him tomorrow and take a look at him. He's talking possible hospitalization for IV steroids, and wants him to stop the Lialda 3.6 mg daily that he's been on since 9/20. Man, my head is all over the place....I don't know what to think anymore.

Post Edited (colbran) : 10/10/2012 1:33:58 PM (GMT-6)

Posted 10/10/2012 7:36 PM (GMT 0)
Have you ever been able to do high dose probiotics, I mean really high dose? By the way, do you remember which two antibiotics he was on in the very beginning for his fingers? My UC started while I was in the hospital taking the antibiotic Levaquin.
Posted 10/10/2012 7:41 PM (GMT 0)
Hi garylouisville...I believe his antibiotics were Keflex and Bactrim DS together. He has not been on really high dose probiotics, no....I tried Florastor back in July which I thought right away helped, but then stopped. Sort of like this prednisone...it seemed to kick in immediately, but then it has waned in its effectiveness. When I talk to him after school in about 15 minutes he's going to be SOOOOOO ticked off. There is NO WAY he thinks he is sick enough to need hospitalization, and by the looks of him (other than he's lost a ton of weight), you'd never know something was wrong. He goes to school, works after school until 8 or 9 at night, comes home and eats, and goes to bed...he doesn't appear unhealthy at all...i.e. no lack of energy, lethargic, anything like that. He just can't stop this diarrhea!
Posted 10/10/2012 8:51 PM (GMT 0)
If you are able to I would try the high dose probiotics, taking about 1000 billion units per day. It can be expensive but the low dose ones are generally worthless. I definetly feel the VSL works for me but there are others.
Posted 10/10/2012 8:57 PM (GMT 0)
Sorry to hear about this. It is not fun to watch a loved one be sick. DO NOT blame yourself as many people take antibiotics and don't get UC from it. This is a disease that is brought on by both genetic and environmental factors. Antibiotics can be very tricky with the gut, but save they save lives. Keep that in the back of your mind. Western medicine is tricky. At first I was reluctant to go/stay on meds for my UC, but with this disease its important to remain on a maintenance drug. Getting colon cancer is not something you want down the road, and flares can be a nightmare. He will get better and he will gain remission soon. Lialda is a great drug and the safest out of all the maintenance drugs. It even has a therapy component in it that keeps one from getting colon cancer. Stop blaming yourself because you did nothing wrong, I can assure you.
Posted 10/10/2012 9:03 PM (GMT 0)
Thanks Sierra...I appreciate it! I need to keep doing my research...I think by now that the GI thinks something should have taken hold and it hasn't. His nurse said to have him stop the Lialda, but man, I'm not sure I want him on IV steroids just yet. I think I may have to go with my gut on this and try some probiotics first...I just don't know how long enough is enough. I have an app on his phone to timestamp when he has a BM. I think that would help me better communicate with the GI so we're not just throwing out some random number of BM's he has in a day. I know that they are better during the day. He has gone from having them continually all day, to having them just a few times during the day and more at night with Lialda, to having them not until late afternoon/early evening and at night with Lialda and prednisone. It's only been just shy of a week with the prednisone....I take it since the GI wants to see him tomorrow that he feels it should have kicked in more than it has.
Posted 10/10/2012 10:02 PM (GMT 0)
Long term usage on pred is bad, but using it to gain control might not be too bad. Not everyone gets bad side effects. Just a thought.
Posted 10/12/2012 12:01 AM (GMT 0)
Here are a couple of other thoughts.  1. trying an elimination diet - drastic but maybe worth it?  2.  add enemas? 3. extensive food sensitivity testing - we're waiting on results from 90 different food sensitivities.

I would also add that if he doesn't think he needs the hospital, maybe he's right?  In a pretty short time he's going to have the legal responsibiltiy for his own medical decisions and your ability to work with him will be based on influence and persuation.  Hope I don't sound bossy or even confident, I just think it's something to consider.  He sounds like a very strong person who has earned a fair bit of respect.

 

Posted 10/12/2012 2:31 PM (GMT 0)
Are steriod ememas worse or better for side effects than prednisone in pill form?
Posted 10/12/2012 3:19 PM (GMT 0)
From our perspective, not as bad. Less emotional impact, no crazy hunger, no trouble sleeping with the enemas - all present in the pill form. I've read it's less systemic and more localized but my daughter still has puffy face so it must be somewhat systemic! Although she was diagnosed with pancolitis, they are still working to control the symptoms right now.
Posted 10/25/2012 4:39 PM (GMT 0)
Colbran, how is your son?

We found a functional medicine md who tested my daughter for 90 allergins.  She was already off dairy, gluten and soy but still experiencing pain and some bleeding & mucus.  Turned out she was also allergic to eggs (in bread, pasta, flour tortillas) and the biggest allergy was soy.  Once we eliminated the eggs, we've seen a huge decrease in cramping and within a couple of days the stools firmed up and we haven't seen blood in a week or so.  Doc also started turmeric & fish oil for inflamation.  We'll see how it goes but I think the allergy testing gave us some good direction I wanted to share with you. 

Posted 11/5/2012 2:16 PM (GMT 0)
Hey Orchids, thanks for asking! I haven't been on here for a bit....things were going fine once 40 mg of prednisone was on board. Sadly, with the taper to 30 mg, about midway through that week, he started to go back to his old self, and then 20 mg on Saturday, and he's a mess. I called the physician this morning and he's back up to 40 mg. The doctor wants to see him tomorrow, and he mentioned that he is steroid dependent and we need to move on from here. He's mentioned some biologics? I'm not sure what those are, but obviously this taper isn't working.

Interestingly, I was allergy tested a few years ago and I myself was allergic to approximately 30 items on (I believe) a 90+ allergen test. Dairy, Gluten, wheat, eggs, etc., were all part of that. It sounds like you have a doctor that is really proactive. Did yours recommend the allergy testing, or did you go that direction yourself? What is she taking for regular meds now?
Posted 11/5/2012 9:12 PM (GMT 0)
Can anyone explain what biologics are? Started 40 mg of prednisone on either 10/4 or 10/11 and it worked very well. Started the taper back on 10/27 to 30 mg, 11/3 to 20 mg, then back up today to 40 mg because he was back up to 20x in the middle of the night. It doesn't sound like the doctor wants him on this, says he's steroid dependent if he can't taper. We see him tomorrow. Son does great once the meds are on board in the a.m. (the prednisone and 2.4 mg of Lialda), but this only lasts until evening. Slept all night on the 40 mg and would make it until the following morning and just have a few episodes before he would take the meds again, but now that has increased to going through the night like it did before and sustaining itself until the meds are on board in the a.m. If you were me, what would you do?
Posted 11/6/2012 2:02 AM (GMT 0)
Hi Colbran-

Just so you know your child is not the only one this has happened to. My dd was 9 when she had to take antibiotics...the diarrhea started, then C-diff the full blown UC...and that is when my nightmare began.

We are now at 3yrs of UC.

My dd was only 67lbs and was taking 40mg a day of prednisone....I imagine your son is a bit bigger so I really wonder if his dose is high enough?

Also, I think they weaned his pred way too fast... dropping from 30mg to 20mg after a few days is way to fast.

It took my dd almost 3 mo to wean from 40mg- super slow.

At this point I imagine he is steroid dependent and it is not good for anyone to be on Pred long term so they are trying to find a med to take its place as he weans off of it.

I think they are talking about Remicade? I don't know alot about it as we went on 6-MP which is an Immunemodulator and we have been very lucky that it has mostly worked for her.

Lots of UC'ers are on Remicade with good results.

I hope you have  a GI you like because it sure helps to trust their advice.

As far as diet the only thing I watch is sugar intake, not too much heavy meats- steak, hamburger etc- now my dd is only 12 so I am sure we eats much different from your son and I can still control her diet quite a bit.

I also only give her Almond milk or lactose free and she tolerates both of these.

I have also had her on VSL#3 since diagnosis and I have to believe it also helps. She gets a DS daily.

Thinking about you...you guys have some tough times to go through but I am hopeful he can turn around and get back to enjoying HS.

Posted 11/6/2012 5:05 AM (GMT 0)

Dear Colbran,

When we took our 13 year old daughter off prednisone, she relapsed as well.  I didn't want her on the pred long term because of the side effects so I asked for cortisol enemas (along steroids but more local).  She was on two per day (morning and night) for two weeks, then to one a day for a month and now she's on Rowasa enemas every other day.  Also Mesalimine 4 x .375 in the morning.  We are hoping to get off these medications eventually but are satisfied just to be on gentler medications.

Could your doc have been saying "probiotics?"  we aren't using them yet, but planning to as she stablizes.  We are also using fish oil, turmeric, and liquid iron supplements because her iron was low.

The allergy testing was at the direction of the functional medicine md.  We have eliminated eggs and soy due to real allergies (she had the test for 90 like you had) and gluten and dairy because so many with UC do better without them.  My husband also has colitis and food allergies.  Tendency for food allergies is thought to be genetic so I would not be surprised if he had them too.  Eliminating specific foods is really hard at first but now that we're seeing the progress - it's definitely worth it.  Soy is the one that keeps cropping up in everything.  We're eating a lot less processed food as a result of having to eliminate soy.

about tomorrow, if I were you I'd go for the steroid enemas (if your son's willing) and ask for allergy testing.  blue cross blue shield pays for it but lots of others do not.  When she was suffering so much I just really needed to know if something I was feeding her was actually making it worse.  I'm so glad we found out because I never would have thought about soy OR eggs!  Our regular GI said diet is not important and won't make a difference, but it made a big difference with myhusband, so we were fairly determined on that front.  I can't imagine that if you were allergic to 30 plus food items that your son would n't have some of that too.

Hope some of that's helpful.  Let us know how things go tomorrow.  We'll be thinking of you and your son!!

Posted 11/6/2012 3:04 PM (GMT 0)
Hi Orchids....no, he didn't say probiotics. Matter of fact, when I originally switched GI's because the first one shot down probiotics and changing his diet, the 2nd one said that yes, both of those ideas wouldn't hurt, but they wouldn't put him into remission. That, I understood at that point....the first GI should've given some sort of kudos to those two ideas rather than shooting them down and brushing them aside. After all, there is inflammation in his colon...what better way to improve that than pull inflammatory foods from his diet and work from there. Wow, it doesn't seem like rocket science to me, but he just wouldn't hear of it.

Biologics was the word the new doc used, that I know for sure. When I was allergy tested, I was certain it was nuts that was causing my problems (my side effect was itchy skin, but no hives or anything...just itching in really weird spots like on top of my feet, between my fingers, behind my ears, places like that). I had to stay off of the antihistamine for 10 days I think so I could be tested so everything showed up as it should, so basically was down to eating milk and eggs by the end, because everything else was causing me to itch! Turns out, those two things were the worst on my profile! LOL....figures. I wouldn't be surprised if my son has allergies, as my husband, too, has a ton of environmental allergies and just hasn't had them treated.

When this new doctor looked at his colored colonoscopy, he informed me how severe his ulcerative colitis was. Glad I took that for him to see!

Someone had asked how big my son was....yeah, he's about 235 pounds or so (6'11"), so maybe 40 mg of prednisone wasn't enough, I don't know. I don't like the idea of steroids either, but he didn't seem to be bothered by them and they actually did help at the higher dose (40 mg) finally. I don't know how soon they should be tapered, but I wonder if we went too fast?

Also, Orchids, based on the info from InSoFla, I also have liquid vitamins and minerals for my son, as well as L-glutamine, L-threonine, slippery elm bark powder and probiotics. We haven't had good reactions to the slippery elm powder or probiotics at this point. They seemed to make him worse. Now, I don't know if that was those making him worse, or if it was the fact we were tapering at the same time. That's the problem....I get something started, doctor takes something away, and it's a toss up as to what's causing the problem!! I just feel like since he's been tolerating this since May (the diarrhea), it may take longer than a month to think that his colon inflammation is going to get better. I'm not a physician, but in viewing what people do on these forums and what works and doesn't, it can become overwhelming trying to figure out the right combination. Sometimes I feel like physicians have a one-track mind anyway and aren't willing to get to the root of the problem, which ultimately, in my mind, may be going all the way back to bowel rest and then Paleo or something of that sort to keep out the inflammatory products and see how he responds. The bad part is, he can get a lot worse before he gets improvement and that scares me.

The other problem is that I'm not with him 24/7 to monitor everything that he puts in his mouth. When he starts to feel better, he wants to eat some of the stuff he used to and as long as that doesn't make him worse, then he thinks that's okay. Ugh....he's almost 18, so he it isn't like he's around the house a lot!

Appointment is in about 2 hours, so I'll check back in. Thanks to all of you; just recently Orchids, IBDISTHEPITS, as I hadn't been on here in awhile with an update...I really appreciate it!
Posted 11/6/2012 6:52 PM (GMT 0)
You're not wrong about the medical training.  Regular physicians and GI's have very little training in diet and are currently not trained to find the root of the problem - which is fine in normal illness situations - but not for chronic intestinal disease.  If you go to the "functional medicine" website they explain the distinction between treating disease and figuring out what's causing the disease.  You can also see whether there are any physicians trained in functional medicine in your area.  That's how we found our doc but we still need the GI because we still need the medications for now. 

Everything I've read & learned tells me your new GI is right - 1. use the medications to get into remission, & 2. Eliminate the causes so that the remission becomes stable.  Causes can be chronic stress, foods, environmental toxins, 3. Use the supplements to continue reducing inflamation and promoting tissue healing.

about the food allergies...  because my husband and daughter are allergy prone, we have learned that whatever they eat continuously - that will be their new allergy.  (maybe like milk and eggs??)  Over time of not eating something, the allergy decreases.  In order to avoid their developing new allergies and to reduce the ones they currently have - the functional medicine md recommended we go over to a "rotation diet" which just about killed me to try figuring out, but now it's not bad at all.  The point is that their bodies shouldn't see the same thing every day because that's when they start treating the food like a toxin.  So they can eat lots of different things, just not the same thing until 4 days later.  I couldn't do that because it was confusing, so now I'm doing a 7 day calendar with different foods each day but the same things more than once in the same day (like chickpeas in salad at lunch & hummus on the side that same day).  Believe me I know this sounds (and is!) like a total pain in the neck but once I got the calendar figured out it's less stressful than before when I had to worry every day about what to cook or buy next.  the Metametrix website has powerpoints and diet template forms that I used. 

Other people have had good luck with the Specific Carbohydrate Diet. 

We're all in unchartered waters here, Colbran.  Stay stubborn no matter how confusing things get.  Nothing takes the place of parental instincts.  With your son, he'll have to decide what's worth it and what's not - all you can do is educate him and give him some choices. 

Hope the doctor's visit goes well.  Let us know!

 

Posted 11/7/2012 12:33 AM (GMT 0)
Hope your visit went well!
Posted 11/7/2012 1:42 AM (GMT 0)
Well, his visit went well in my mind. I didn't convince him of doing it, but he has decided to do prednisone again. I indicated that I thought we tapered too fast and he agreed, and was very apologetic that he had the problems he did. Sooooo, back on 40 mg daily for a month. Then at the month point, drop to 35 mg for 2 weeks, 30 mg for 2 weeks, etc., all the while keeping tabs on how he responds.

I questioned him about 60 mg considering the size of my son and asked if prednisone was prescribed in different mg dosages like an antibiotic like amoxicillin would be, and in fact, no, it isn't. He assured me 40 mg was okay and really better for him with less side effects. He also said all in one dose, because 20 + 20 doesn't have the same effect as 40.

Second, I questioned what would happen if he didn't tolerate the taper and he mentioned Imuran, Remicade or Humira. I also questioned Asacol (it's all I could think of), and he said he was past that. I assume he means that he was beyond this. I don't know if they have a sequence they use and have a starting point, but somehow, it sounded like Lialda was above Asacol on this pretend pyramid I have in my mind that we're climbing until we reach the right one. I don't know this to be a fact at all, it's just what I have in my head.

That's about the extent of it. Already back on the 40 mg for 2 days and it's made a difference for him. Also, still taking Lialda 2.4 mg daily.

I am going to get the L-glutamine/whey protein powder/liquid vitamins/almond milk shake back on board in the morning now that we're back on 40 mg. I'm also thinking that the probiotics will be taken with his Lialda and prednisone. He didn't tolerate the probiotics opened up and mixed with slippery elm bark powder for an "afternoon snack". So, I'm going to give those to him in the morning in the pill form with the other meds he takes now that he's back on the prednisone full dose. If he reacts adversely to these, I feel like maybe he will be able to tolerate it better with the prednisone on board. He didn't tolerate them just a few days ago with less prednisone and broken open, if that makes sense. Trial and error, more trial and more error. That's where I'm at!

I suggested to him today that we would potentially be going Paleo/SCD if we couldn't get him to taper and he wasn't at all happy about it. Matter of fact, I believe his exact words were "There's no way I'm doing that!" Did I mention he was almost 18? LOL...

Post Edited (colbran) : 11/6/2012 6:45:24 PM (GMT-7)

Posted 11/7/2012 3:04 AM (GMT 0)
colbran, I'm really sorry to hear you and your son are going through this.

I'm going to say something which is not at all popular around this board, but it's something I really needed to hear when I was diagnosed: it is OK to use conventional medicine to get out of a flare. You are not failing your son if you don't explore every single nutritional supplement, diet, or alternative therapy. This is his first flare: it's scary and painful, and it's been going on for a looong time now. Remission and maintenance are a good time to experiment -- a severe flare is not. I speak from experience. I spent a lot of time feeling guilty and thinking that my severe flare was due to not following paleo or SCD strictly enough, or not taking enough probiotics. I know now that the truth is that I have severe UC, I'm experiencing a severe flare, and, as your GI said, diet changes can be helpful but for me they are not going to end a flare.

Especially because your son is in high school and it's a lot harder for him to 'put his life on hold' for this, I would recommend being aggressive with treatment and taking your GI's advice about using an immunomodulator or biologic if you find he is steroid dependent again. I wish I hadn't waited so long.

Like I said, the way I feel is definitely the minority opinion around here, but I think it needed to be said.
Posted 11/7/2012 3:13 AM (GMT 0)
Thanks Pluot...I appreciate everyone's opinion, including yours! He is taking this like a real trooper with very rare complaints. I commend him for that. There aren't a lot of kids who would tolerate what he has and not shut down by now....he truly is remarkable that way!

This GI is better than the first, and he was the one who said let's try this again only slower. I'm willing, my son is more than willing, so we'll go this route. Cross your fingers!!
Posted 11/7/2012 3:20 AM (GMT 0)
Pluot...I totally agree
the most important thing is to get out of the flare and starb getting the UC under control.

If he is not able to wean his Prednisone successfully you should really move to the Imuran/6-MP which does take about 2-4 weeks to start working in your system. Usually you start these meds while on Predniosne and as you wean the Pred slowly the Imuran/6-MP take over.

Try not to do too many things at once, it gets very confusing trying to figure what is working and what is not.

I tried the SCD with my daughter- way to restrictive for us, I tried Gluten Free and if a kid does not want to do these programs 100% it is not worth it- they are already suffering enough.

Find what works for your son and stick with that and let him get on with his life which is really what he wants to do.

Best of luck getting him healthy again!
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