I would try hydrocortisone enemas 2 times a day and add in VSL#3 DS As much as 2-4 packs a day. This regimine should help and maybe skip the oral prednisone as we all know what a nightmare that is....
No side effects and I think we checked therapeutic levels within 2 weeks and they were great! Her 6-TGN levels were 175-190 and her toxicity level was as high as 15,000!!! You may need something else...
Happychick My 13 yr old has been on this combo for over a year with great results. She is on 6-mp - same as Imuran but already broken down and Allopurinol. I was able to substantially decrease the...
Rage My daughter has been on this combo of over a year and is doing great with it. The addition of the Allopurinol got her into therapeutic range- she never got their without the addition of the...
6-tgn levels should not be over 400. Is your toxicity level is range? My dd used to have low tgn levels. We added in Allopurinol and were able to come down on the dose of 6-mp and her tgn levels...
OK Erin I sent it hopefully it will work sometimes it takes a few days :tongue:...
Hi Edadamo-Thier are several parents on this board with children with UC. I find that most of them don't post here very often as their are some Facebook private groups that many of the parents use. I...
Has anyone used this supplement? It has L-glutamine, slippery elm. aloe, marshmellow root etc Thinking about starting it and would love to hear your experiences- Thanks...
Just made a dip pureeing beans and adding salt, lemon juice and some olive oil. It is really good and easy to eat- Do you think you need to eat RS every day to benefit from it? also- it needs to be...
A few questions- Do you rinse the Navy Beans ( Eden Foods Brand) ? Do you heat them up? Can you make a bean dip? How much to start? Thanks...
Formyson, Please do try the hydrocortisone enemas...it really is risk free and can really help. Don't let your Dr say it won't work because of the extent of having pancolitis,it can help! Remember it...
Anyone use these products to help with their UC? Also Moringa leaf powder? what are your tips and how much a day- Thanks!...
Yes- he should get better very quickly if it was just the pentasa that set him back.So sorry it did not work for him. Has he tried Hydrocortisone enemas yet? They could be helpful- of course it may...
My daughter tried several different 5ASA's and was intolerant to all of them :confused: It was such a bummer not to be able to use this level of medication but it made her symptoms worse very...
So sorry that this did not work out for you guys right now. How is your son doing at this moment? Any improvements in his condition? Thinking of you!!!...
Formyson- Sorry for mu post I now see that you said you were aware of the at home procedure and that you wanted a more medical approach- Killcolitis is a wealth of knowledge- chat with her Is your...
Hi- I am so sorry about your son. My daughter was diagnosed with UC also following a C-diff infection as well. Are you seeing a Pedi GI for your son? what about trying 6-MP or Imuran? Probiotics?? He...
Just want to add that with a flare of proctitis you would do well to do either a Rowasa enema or hydrocortisone enema- they really help and you can do it morning and night until things are under...
My daughter's symptoms just got worse instead of better...diarrhea worsened within hours of taking mesalamines...we tried several we even tried Rowasa enemas and that caused diarrhea very quickly- I...
Hi Mom- after my daughters horrible experience on Prednisone I vowed I would never allow that again- but when they are first diagnosed you are really caught between a rock and a hard place. You will...
My daughter sees a Pediatric GI- I think all Pedi Gi's and GI's in general treat ALL GI issues. I have never heard of a GI only treating UC patients. As long as they are well versed in IBD,...
It is definitely possible...after my older daughter had been on an antibiotic for a few weeks and was about to stop she developed terrible hives and since that reaction- only hives, we now say she is...
That really is so awesome. I am so happy for you :turn: My hubby and I were engaged after 5 mo and married 5 mo later! That was 16 years ago! I always say when you know, YOU know!!!! Best of luck to...
Hi Mom, I also have a young daughter with UC. She was diagnosed when she was 9. She just turned 12. I just want you to filter a lot of the info you get from others regarding the treatment of your...
Hi Susan- I am in California, you are thinking of Killcolitis- she lives in Canada. School easily put a health plan in place for us and accommodated me in any way I asked :) Thankfully my daughter...
My daughter is intolerant/allergic to mesalamines- huge bummer. She has been on 6-MP for 2 1/2 years now- occasionally we have to use hydrocortisone enemas as well. In the beginning she was on Pred...
It should actually be better to do the one enema a day. I also agree that if you do the full bottle one time a day it will reach farther up the colon therefore decreasing the inflammation up higher....
Hi Susan- We have had long periods of doing well. It is a battle though. Is your son on other meds? The main thing is that you keep the inflammation under control...that means staying on maintenance...
Hi Susan- My 12 year old daughter has been on VSL#3 DS for several years. I have given her as much as a packet and a half but mostly maintain her on 1 full packet per day. She has never had a problem...
My poor 12 year old- she complains so much but i make her take it nightly anyways :turn: I mix it in a bit of almond milk ice cream and mix it up- she takes a whole packet of DS and also mix in a bit...
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...
Hope your visit went well!...
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...
Hives like you are describing will definitley need Zyrtec daily.You may also need something stronger like Atarax to get them more under control. Benadryl is very short acting and causes extreme...
My daughter is also intolerant/allergic to the oral 5 ASA's and after using the coretenemas I also wanted to see if we could use mesalamine enemas instead... half an enema later she was on the toilet...
You can absolutely open the Pentasa capsules and empty the contents into applesauce- don't chew the granules but swallow the spoonful and they get to the same spot just as if you swallowed the...
It is not a MUST that you have a TPMT before starting 6-MP.My daughter did not have it done until she had been on 6-MP for about 2 mo- they do need to check frequent CBC and Liver function tests...
I would try anything and everything before surgery. Some people do better on one med versus another. Even the same class of medication. Is your daughter still in the hospital? Can you find another...
Seasons- Did the Prednisone help your bleeding? Are you still on it? Maybe you need to go back up until the 6-MP starts working- If I remember you started weaning down on the Pred before you even...
I believe it is best to take them after eating. If you take them on an empty stomach your stomach acids can possibly destroy them and if your stomach is digesting food they will sail right on thru to...
Chrissy- Have you had a colonoscopy or sigmoidoscopy? I am a firm believer that without adequate treatment the UC will spread upwards. I feel like Rowasa reaches higher up in the colon than Canasa...
Have you called them to see if they made any changes to the ingredients?My dd also hates the lemony aspect of this but I have had much better luck getting her to take it with applesauce. I don't...
Seasons, I would hurry and start the 6-MP before weaning the prednisone any further so that you give the 6-MP a chance to work. You want the 6-MP to kick in while weaning and getting off the Pred. so...
Seasons...all your wishing and procrastinating will still lead you down the same path...I wish I could say it was different but their just is no other viable options....I searched and searched as...
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She was on Prednisone for a 2nd course and it worked but we had nothing to take its place after to get her off the pred. Not sure how long she will be on it...most say if it is working why stop? We...
Hi Cactusgirl- I hope the LDN and all the other things work for your daughter. Just for your info my dd was the same. All mesalamines made her worse- she tried Pentasa, Colozal,Sulfasalazine. 6-MP...
Love to hear how you are doing and so happy that your current regimen is working! Keep coming back and letting us know how you are doing- I applaud you for being able to pull yourself away from this...
I think they work very well and what I have learned is Dr's don't know everything so...push to try them because they can work very well and you will not know unless you try! It is best with the...