If I could just my daughters bleeding under control! She is 13 and has been diagnosed with Crohns/ulcerative colitis. BUT...she cant take any of the medications, like pentasa, asacol, 6mp because she gets pancreatitis and becomes even more sick. So I have worked in a hospital pharmacy for 15 years and I put her on fish oil, probiotics, calcium and her symtoms were half relieved. She still has some bleeding and lots of diarrhea, but she has not been hospitalized for 3 months.
So my question is were to now. She is under weight, her hair is falling out. No one has any answers. She had lots of fat in her bowel movements but it has stopped alot since i put her on digestive enzymes. I just dont know where to turn to now? Anyone have any suggestions?
I had diarrhea for about 4 months with a lot of bleeding and on three occassions hemorraghing. What helped relieve it a bit was taking Imodium with a cinnamon or chamomile tea that helped calm my stomach and seemed to curb the diarrhea a bit. But it took a lot of steroids pumped into my system to finally get the Imuran I have been on to work. The diarrhea eventually stopped and all the weight I lost I put back on (plus a nice extra 30 thanks to the on-going steroids). I hope your daughter does get better. She will be in my prayers. Good luck.
This may seem silly, but I've found that what helps my diarrhea is to eat things that would normally constipate people...for example, if she can tolerate lactose, my doctor said soft cheeses like goat cheese, or low fat cottage cheese can be helpful. As long as she doesn't have a dairy problem, eating things like cheese, taking pain medicines and anti diarrhea medicines may help, hopefully. What stopped the bleeding for me was Remicade, nothing else worked. Even though my diarrhea continued, it was no longer bloody or painful. Good luck!
Hi! I'm 14 and I was just diagnosed with ulcerative colitis. My symptoms aren't as bad as your daughters and I was able to control mine with steroids, but I can't stay on steroids forever and want to cure myself with natural remedies. Look up David Klein's book for self healing ulcerative colitis. I just ordered it and am hopeful, because so many people have cured themselves this way. I would also look into food combining for easier digestion. Hope this helps!
I'm so sorry for your daughter's struggles and pain. I have CD and was diagnosed 6 years ago. It would be of value to know if she has CD or UC, because with Crohn's, you can develop obstructions and fistulas and these can penetrate down through all layers of the intestines. UC doesn't behave this way. The reccomendation to put her on anti-diarrheal meds is a good idea. Normal people are not supposed to take it w/ any regularity, but if she has CD, that advice goes out the window, you can only help her by using it. I buy the generic. Ultimately the best relief i have received is with Remicade, although i developed a MRSA and am scared to death of getting that sick again. I seem to always have infections. Let us know if you can get her on Remicade - there are patient programs for those who have no insurance. My last reccomendation is a good one, to try Questran, ask the dr about this, i think the generic is cholestyramine. It is grainy tasting, even mixed with juice, but taking it is worth the symptom reductions, it binds with the bile salts and helps normalize diarrhea and "water dumping" making sure she gets enough water when she is getting severe diarrhea, is very important. It's a struggle for me. hope some of those might be worth trying for you, your daughter. God Bless.
They keep getting new meds for UC and CD. There is a new one out that is not suppose to have the side effects that Remicade and Humera sometimes has. As your GI doctor to try this. Apparently it comes in a shot form like Humera.
Hello, our daughter is 12 and was diagnosed at 11 with Crohn's and we still haven't found the drug that works - she has the opposite when it comes to bowel issues -she's constipated so she has to take "peg powder 3350" which helps to maintain the liquid around the bowels so a person can "go"....she's tried pentasa (made her sick also but also gave her a bought of psychosis...gotta watch the drugs for that too...) and even Imuran didn't work for her...
now they want her to try Remicade (which is an IV infusion but you only go 1 x every 8 weeks for approx. 2 hrs) or Humira (needle injections every 4 weeks) or Cimzia (which is under clincial trials for pediatrics in Ontario Canada) the idea is that a Crohn's Patient - can't digest food like "normal people" loss of appetite or pain when eating - In people with Crohn's disease the idea is...the immune system produces too much of a protein called TNF-alpha (tumor necrosis factor-alpha). TNF-alpha triggers inflammation, which can lead to painful, inconvenient symptoms and damage to your gastrointestinal (GI) tract.
the diarrhea will stop. ok so she can't take drugs. how about rectal. this is a steroid foam that is taken like an enema. Ask your doctor. this you can do to help.
HOME MADE yogurt 3 times a day before meals. small meals 6 times a day. no nuts or dairy products, no wheat (except white toast) no gluten products. fish is good, eat fish 2-3 times a week. with the fish oil also give Serriapeptase...search it on Google. Also take Boswellia (concentrated tumeric...so good for you and stops bleeding - 4 per day - I take 5 and I'm 30). Oh right...diagnosed with UC since 5 now i'm 30. In a current relaps. No fried foods, no greasy foods, no fatty foods, no raw fruits or vegetables, no caffinated drinks no cold stuff expect yogurt. No fruit juices, no sugar! White sugar is an enemy for us UC'ers.
Drink warm or hot water, steam your veggies (carrots and potatoes at first, then add cauliflower and asparagus). No milk but drink soy milk (So Good Soy Beverage is a great taste) or Goat Milk...might taste funny but you know what you gotta do what you gotta do to get well and Goat milk has probiotics and oligossacharides. Eat a multivitamin every day and Vitamin D is a must (1000 IU) every day. Want to drink juice? When then juice your veggies.
Do not slip on her diet or it all goes down the drain, literally. You have to ask her too if she can do this, I know she is twelve but I was 5 and it was a slap in the face for me. Full head of thick hair, 5'10", and 180lbs....I'm not joking here. This condition is painful I know, but you can fight it.
Talk to your dr and GI and talk to a dietician and visit your local health/orgainc shop that carried vitamins. The yogurt helps. Listen, 8 weeks ago i had a flareup, It hit hard very hard (10-15 bm per day) I could not move without going to the bathroom. It got so bad and I could not take any action. i asked my wife to start me on yogurt one day about 3 weeks ago and I would sprinkle some probiotics over it. One a day and I felt good for hours. Then a few days later I was having yogurt 3 times a day and in 2 weeks my 10-15 bm went down to 3-4, and now this is week 3 of yogurt, and I feel so much better, I have one normal bowel movement and some times one diarrhea. I firmly heheheh firm...no seriously I really believe that if I keep this up by week 5 or even week 4 I will be back to normal. Your daughter needs a lot of bed rest and needs time to relax, no tv no games no phone no music, just relax, and sleep.
Probiotics: human strain and plant strain...plant is useless and I say go F yourself to the companies that make them because those probiotics are for aesthetic reasons only, the moment you have a BM they are flushed out and DO NOT colonize; however, on the other hand the HUMAN strains do colonize but they take time hence the 3 weeks of yogurts with probiotics sprinkled on top.
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but i'm not a dr and i'm not saying follow me, this is what has worked for me over all these years. Trial and error was my painful process, but I have mastered it I believe. UC will always be there, and relapses will always happen, but having a healthy diet, and watching your own actions will decrease the length of the relapse. My flare ups would last for 2-4 months and steroid were the only thing that helped, now they last for 4-6 weeks and the symptoms aren't as bad eventhough they might feel that way. Oh one more thing, tell your daughter to keep a journal, that journal will need to have the following, what she ate how it made her feel, each meal. and also the number of times she had to go to the bathroom and how it was, like on a scale of 1-10 the amount of blood or diarrhea. Over the course of this you will see the trigger foods that cause them, and I can guarantee you that sugar is a huge factor (white sugar) and you will also see how she is improving.
When she is better, start her on aloe vera juice/gel...small small amounts....but only when she gets better.
ok, remicade is junk and eventually the drugs effects wear off then what. no! talk to your doctor, and ask about asacol (5ASA). It is designed for Crohns. Is your doctor an idiot? I think so. Asacol is good at stopping inflammation - side effects are minimal, and only a small amount is absorbed at the inflammation site so it does take time (weeks).
HOME MADE yogurt 3 times a day for your daughter. Watch the difference. Drink warm water atleast 1.5L a day that is 6 cups over the course of a day. You can also incorporate a vitamin E into her diet. Vitamin E will act as a lubricant in her system. Do you know what Remicade does? It slows down the spasms of the colon/large intestine...you want a proper flow not a slow one. Aloe vera gel in her warm water is good too, because it acts as a lubricant. Too much however over an extended period of time, and it could lead to diarrhea. Lots of water and good exercise every day. Juicing your veggies is good too. If you juice carrots, it contains caritenoids (spelling is bad i know) and that also acts like an astringent and can help with the movement of the stool. Kids are strong and bounce back but I am sorry to day you have the poor child on so many drugs, stop it, you're just hurting her. You are your own doctor, you know your body better than anyone else. I would be given prednisone for months and months to stop my flares, and then one day it was like I had enough, I was feeling weaker with every dose, it was time to change.
changing your diet will change everything. be more healthy. dr's are always wanting to jam something in us, I mean yes it's important to listen to your dr, and no don't stop your meds but some times enough is enough - this is a better way. find another GI talk to GP regularly, visit organic/health food stores, and join a support group. Forums are ok but real people make a difference.
I am sorry if i have offended you in any way but I suffered alot with UC and it hurts to see other children suffering. I wish your daughter and your family luck.
I found that carob powder stopped my diarrhea (and bleeding) from ulcerative colitis cold after a few days of drinking it with water. I eventually eliminated grains and beans and other food with a lot of lectins like potatoes. It's like solving a really weird math problem that I've been dealing with for 10 years. I guess carob is an antibiotic. I hope this helps.
Remicade is a new type of drug you should try. It is a TNF blocker so it works differently to other more conventional anti inflammatory drugs. Ask your doctor about it. It is so amazing! I know this because my mum works for the company who makes it. Also I have UC. Good luck!
I hope things have improved for your daughter, I see the original post was from 2008. My son has UC and found great relief from the elimination diet. We started with the 21 day cleanse by Standard Process. The first 7 days were hard, symptoms got worse before they got better. After going through the elimination part we discovered that he is gluten intolerant. He does take asacol but not regularly. I know he found relief from the natural stuff and he ate better, but he is 21 and you can't tell him much of anything. I would see if you have a Chiropractor/Nutritionist in your area who heals using natural herbs or a homeopathic doctor. You can also try 1 tbs 3x day of Collodial Silver, or food grade diatomaceous earth, or activated charcoal for the diahrea, Collodial silver worked well for quick relief to diahrea. I hope your daughter finds relief, she is young to be going through this. Prayers for your family. Kelly ( it is 4:30 and I can't sleep so plz forgive the spelling)
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