Proctitis is inflammation of the rectum just like colitis is inflammation of the colon. Have you had signs of crohn's in your colon in previous biopsies? People with proctitis don't necessarily have...
I hope the c diff clears soon. You can do prednisone while on Vanco or Flagyl. My kid has done it a few times. We ALWAYS make sure to use Florastor to avoid occurrence of c diff. Before jumping to...
not creative - thanks for the reply. Did you take other anti-TNF drugs before Simponi? Remicade & Humira did nothing for my kid and we are almost out of drug options. Surgeon consult on October...
I don't know why it lists my old signature. My daughter is coming off Humira & starting Simponi on Tuesday....
My kid is just starting it too. Meds are being delivered Tuesday. My daughter has Crohn's and I haven't found anyone so far taking Simponi for crohn's yet, especially a kid. What is your dosage? We...
Man i hate c diff! Have you thought of going to a walk in clinic? The sooner you can get on meds if you have it the better....
I know this is an old thread but any news? any new users? My kid is starting Simponi next week for her crohn's....
I would be concerned with uping your dosage too. More of the same meds don't necessarily mean better control of the disease. Have you spoken to him about adding another drug to the mtx? My daughter...
Bareket, I too am very concerned with my daughter's growth. She was just at the 4th percentile for weight, and that is part of why we went to the exclusive enteral nutrition (EEN). She can't keep...
I think I could have wrote your story myself for my kid. We were in the hospital last week, and caught back c diff after 3 days in. (we had 2 negative tests before admitting) We can't be certain that...
With children I have seen two forms of dealing with this disease, either the step up approach or the step down approach. Depending on the severity of the disease, and the doctor's previous results...
Habs - too funny! Thanks for the laugh! Prednisone is evil (but mostly a necessary evil). Glad you have someone in your corner that supports you and is there to help, even when the prednisone rage...
Bareket1 Welcome to the forum. I am sorry to hear about your daughter. My daughter is also 13, and has been diagnosed for just over a 1 1/2 years. 73 monte brought up some good points I won't...
It took some getting used to for me. I still cheat every once in a while. There are a few brands i head towards, but I also live in a city where I can get gluten free at some bakeries. The bakeries...
Thanks! I will keep you all posted. She is now down to the 6th percentile in weight, so she has to start gaining soon!...
Tea, that is why she failed it last time, they taste gross. Bypassing the taste buds have to make it someone better to manage. She definitely meets the criteria so I really hope all works....
I am surprised there hasn't been many responses regarding EEN. I know it doesn't loom pretty but there is solid research in people achieving remission this way. Figured I see a few people try it....
monte! Great to 'see' you. I was shocked when Dani finally decided to take the option. She is starting to give up and still just about out of options. Down to 8th percentile for weight and has...
teacher - that makes a lot more sense why the jump for Remicade. Looks like they are trying to get things back on track then. I did look up the weight/height/age and you are right, he is healthy...
I would not make the leap to Remicade so quickly. There are plenty of alternatives before jumping to that. There has been research both ways but Methotrexate,6-MP, lots of choices. If my D only had...
I should be a little more clear. I am wondering how EEN with a ng tube or g tube has worked for people. D is going on no food or drink and only being fed from the tube entering hopefully her nose (ng...
TPN is not the same as EEN. We have been on TPN before and it is admisinstered completely differently. I did a quick search and didn't find much hence the question. But I will search again. I have...
Hey all... long time no chatter... Still struggling for my kid but trying to make the best of it all. After 5 months of the Humira / Methotrexate combination we are finally off Prednisone but still...
My daughter just added psoriasis to her list of diagnosis's. I attribute it to the humira, but who knows. I have it, albeit very mild for the last 15 years. the topical creams seem to help. I agree...
My kid takes prevacid. She has Crohn's in her esophagus along with her large & small bowel. It helps. Doesn't do the trick always, but helps. She will also do gravol sometimes too. Prevacid is easy...
I would definitely be looking at Prednisone for a short term solution. I say that with a heavy heart knowing we just finally tapered off Prednisone after 1.5 years and things are going poorly. My...
Thanks all. Rango, I remember you starting before Dani and was discouraged it wasn't working yet. Glad to see it is starting to do its trick for you. The wait can be hard, especially when there have...
I have been poking my head in here and there, but not posted much since Christmas time. Wanted to just share an update. Humira hasn't been doing anything really, or so it feels. Still on Prednisone...
Remicade (heck all of the meds) can be scary. I was not happy that it was our second drug we went to after prednisone, but we didn't have much choice given the severity of my daughter's crohns and us...
pmedic - I was referring for FT for crohns. It was the IBD department that said not to do it. I don't know know about it for C-Diff. will check out power of poop info. Thanks for the details. PV - it...
Our GI doesn't think it is c-diff, but is running the test just in case as she isn't getting relief with her crohn's. Doing the sample tomorrow to turn in Thursday morning. She is so inflamed...
My kid is doing the same thing. I didn't know about the colon thing.. now I am freaked out....
My daughter has been on Humira now for just over 2 months now. No signs of working yet.......
Oh Scifi - I know this is hard. You will get to the other side. Look after yourself the best you can and use your support system to help you through this. Always feel free to vent here. Sending you...
I agree with NiceCupOfTea says it perfectly. I guess they aren't used to repeat patients and having to satisfy... hugs....
Sorry you had to go through that. Nurses can't do a whole lot in the instance of changing meds. Make sure you have that conversation with the doctor when you see him. I learned the hard way on that....
Ah my daughter was on a strict Modulen diet when in the hospital last time. She was allowed sugar free lollipops. Between the lollipops & gum (make sure it doesn't have soribotal, which causes issues...
Crohnymama love to hear how the Obamacare thing works out. I am an American living in Canada. I am used to the US health care system but have the privilege of Universal Health Care. Unfortunately...
I hate doing charts and diaries and logging in stuff in relation to food, weight, stool, etc. That being said I do it. I do it because looks can be deceiving. My kid looks great... in the face...
Skidog, I know this part is really tough. My 13 year old was diagnosed September of 2012. We have been hospitalized a few times and probably will be again soon. I think the hospital is the best place...
It appears luck is not on your side... sorry...
To me I would look into the blood work more. It could be a liver issue or a vitamin deficiency. It could also be an allergic reaction, but mild. The diarrhea followed by projectile vomiting caused us...
Viviane - that is my kids normal bowel movement. Still waiting for the diarhea to stop. What did your doc say about the Remicade resulting in that reaction? They are both biologics, so it could be...
Thanks JaSanne for the nice words. ldr-eb there is also a neat site I found yesterday that I blogged about. http://www.med.umich.edu/IBD/school/index.html is a great info site (besides the obvious...
I just had a meeting with my "Humira Care Specialist" on this and they say if you miss a dose go back to your normal schedule. So keep your regular schedule and take it tonight....
With crohn's (and probably other chronic illnesses) it is helpful to have people both physically with you and someone to connect over the internet. On days where my kid has no energy to go out and...
Being a full time student, along with crohn's is full time enough. I worked almost full time in university & was a full time student. I don't have Crohn's and I barely remember that time at all...
How are you tapering? dropping a pill a day or a pill a week? I do this with my kid too. Finally got her down to 4 (20 mg) and then a bit of nastiness had to up to 6 (30 mg) my rule is I call and...
pill cam is my vote....
My thought is the one she got was hard to read as she was so inflamed another one is probably in order by now. I'm thinking it would probably be more clear to read. I know her GI said it was hard to...