Hello You may want to consider keeping a food diary. That may help you identify what works and what doesn't....
Hi Samantha, I'm sorry you are going through all that. My son had his terminal ileum and 60% of his colon removed laparoscopically. While he was in a lot of pain he did not have any blood clots. I...
Thank you for the info Bania. My son just came home from the hospital today. Influenza A played havoc with his CD. He also had pancreatitis and positive for Cdiff. Second time he spent christmas in...
I've seen a reference of Ldn working for pmedic. What is that?...
My sister just put her family on the SCD diet and her son, who has CD, is doing great. I tried with my son, not so lucky. My son is 22 and just won't commit to the diet unfortunately....
This is for my son. We are considering it since everything else has failed. We are running out of options. Just worried about side affects similar to those reported for Tsyabri....
Thanks for the reply. It turns out my son has mild pancreatitis and Cdiff. Also since he contracted Influenza A a week ago he can't have his Remicade Infusion. The flu really messed him up....
Has anyone had any experience with Vedolizumab (Entyvio®)? Thanks...
Hi Dorri Sure seems like it. You would need to discuss with your dr. My son gas the same issue though he is obviously bigger and heavier. He usually drinks only half of what is instructed and the...
My son has pancreatitis for the second time. The Doctors do not know if it is due to the CD or medications to treat the CD. Anyone have experience with this? The first time he was on Humira and...
What is FMT?...
My son (CD for 12 years tried all meds and diets), started vomiting and had extreme pain using the bathroom. He says the worst pain ever. He's also been burping a lot. He gas been admitted to...
Hi web, Question: would your inexperienced GI Dr work in conjunction with the Mayo Dr? My sons GI did with a GI Dr from Cleveland Clinic. If your GI is hesitant to prescribe Humira due to of lack of...
Usher Yes your disease can get better and it can get worse. You are in a flare. The flare could be short in duration or last years. My son has been in a flare for 3.5 years. He s 21 years old and...
Hello I'm also sorry you are going through this. Like the others above I believe the surgery should be your last option. I don't have CD but I've watched my son suffer for 11 years. He is now 21...
No one can answer your question but you and your doctors. I would be hesitant but I guess it depends on where you are going and for how long. Traveling out of the country may not be wise in case you...
Stevo68 You're not alone and we all understand. I do not have CD. My son was diagnosed at age 11 after showing symptoms for a year. He is now 21 years old. The philosophy in regards to meds has...
Thanks NCOT....
NCOT, Thanks for the info. It helps me cope anyways. It's hard to watch your kid not enjoy the things in life young people should. Eight years after my son was diagnosed, my 50 year old sister was...
NCOP, They said my son was not strong enough for surgery so he was on TPN for awhile first. He also had to be weened from the pred. That didn't last long though. My son went into surgery knowing he...
If anyone knows of a Dr who will perform any type of fecal transplant for CD patients with no Cdiff please let me know. They do the fecal transplant at HFH Detroit Mi but only for Cdiff....
My sister and a gal I work with get those patches on their legs and arms. My sister will buy a jar of aquaphor and squeezes a tube of cortisone cream into it and mixes it all together. That's what...
His symptoms are like a full flare. He runs a fever, it progressively gets higher. He has chills, fatigue, bathroom runs nonstop. He gets a mouth full of canker sores, sores on his legs. He becomes...
My son is 21 years old. I've helped him manage his disease for over 10 years. We are getting desperate. Nothing but prednisone works for him. We've tried it all. No relief after resection earlier...
My son only has the joint pain during a flare. Try Excedrin for headaches it works very well and won't do any damage or irritation to your GI tract....
Is he a Specialist? A GI doc or any other shouldn't be using the word cure. If he is I would recommend finding a new Dr....
My son is on Cimzia and like you not having the desired results. He is also taking Flagyl, Lialda, and pred tapered at 10mg every other day. He's tried Humira, Remicade, ad Imuran and all the other...
Interesting...yes please keep me posted. I would love to know how this works out for you....
Wondering if anyone had success or feedback regarding the Elemental Diet? My son starts this on Monday. Thanks...
Sorry I meant to say this combo worked well for my son....
Indisposed Are you sure your pancreatitis was from 6mp? You know the cd can cause that to. i would be hesitant to go off the Humira as it may result in the CD getting worse. Also I don't know your...
I wish my son could win that lottery. Glad to hear things are improving for you!...
My son took Humira and it did nothing. Then GI switched him to Methotrexate which he had very mild success. When he was on both together he did great. This combo is only second to Remicade. His GI...
My son had a resection Feb 2013. He had his terminal ileum, 60% of his colon and appendix removed, along with a fistula repair. About 3 feet total. His bloating lasted for quite awhile. He never...
I'm sorry you are having such a hard time. I don't have any words of wisdom but I understand where you're at mentally and physically. Don't be sorry for ranting. If that helps you and gives you any...
That's we are at. Doc just gave my son the forms to have the Prometheus test done for Remicade and Imuran. I hope my insurance covers it. If not we will have to bite the bullet....
Wow. This is very interesting. If we could get him off the meds to get tested is probably our biggest hallenge...
My son has not been able to get off the prednisone in a few years. Everytime he hits 20mg a day the Crohns symptoms start again. The GI doc changes meds, the prednisone is increased, and the cycle...
Dorri Sorry you're in pain. I can't answer that question. You replied to a post of mine. I was wondering if you could provide more information as to why. Thanks. bandit1...
Dorri, Why is that ?...
Does anyone have experience with these pills?...
Does one have less long term side effects then the other? Why is one prescribed over another? Does it have anything to do with where the disease is in the GI track...
No you're not paranoid you are being proactive. You are your only advocate. I don't know why your doc would prescribe both of these antibiotics did he say why these two ? My son takes cipro for his...
I would probably reschedule it out a month or two. Drs tend to minimize symptoms which have gone away. If they reappear you will not have to wait for another appt...
Novice My son was told the same thing in regards to surgery. However, we found a surgeon who was able to take out only the most diseased portion of his intestines. He has 40 % of his colon left which...
Thanks Novice, can you let me know how the retry of Remicade works for you. I want to suggest that to my sons doc....
Just wondering if anyone with CD has had issue with constipation....
Just wondering what success other CD patience have had or not with this diet....
Gumby, Please let me know how the Vanco works for you. My sister tried it for her CD and it worked. She did not have c dif. Her cd as been under control for a couple years now. Her GI Dr believed she...