Hi, I am the mother of an 18 year old Hispanic female who’s been diagnosed with severe pancolitis and ulcerative colitis unspecified.
She is been hospitalized for 2 weeks now and started remicade first dose two days ago.
She is feeling better no bleeding and more formed stool at this time.
This has been a roller coaster for us, and all I can think of how did it happened?
We have no family history of Ulcerative Colitis or Crohn’s. She has lost about 25 pounds and she is currently being treated by a pediatric GI.
We are trying to cope and understand this illness. I am a registered nurse , and trying to help my daughter to cope and obtain the best possible treatment. She went through 3 blood transfusions and currently is receiving TPN.
First time admitted she spent 5 days in the hospital and was sent home with prednisone and mesalamine. Five days went by and the diarrhea got worse. Went back to the hospital and she was admitted with cdiff which is controlled now.
The doctors keep telling her that Remicade was the only option for her, since prednisone and mesalamine didn’t work for a week; her liver enzymes and platelets increased while on mesalamine.
She went back to the hospital got better and about to be discharge home soon. Remicade is working after two days of infusion and we see no more bleeding.
I’m looking to find advice from people that has gone through a similar case. I am also looking for a second opinion and willing to try homeopathic or alternative medicine. I’ve been reading different sites and came across this one which it looks very helpful.
We live in New York City.
Any tips or places that we can use will be greatly appreciated. Thank you!
Best regards,
Ingrid A.
I am a concerned mother of a 18 year old female recently diagnosed with pancolitis and severe UC. I am also a registered nurse living in New York
Hi Ingrid,
I’m so sorry to hear about what your daughter has been through…
I’m also VERY sorry to hear about the C Diff… you say it’s controlled now… may I ask, how did they get the C Diff under control??? If the C Diff does come back, you should find a Doctor/hospital that does FMT (fecal transplant)… it’s the most effective cure for C Diff and also it would help with the UC most likely. I recommend Saccharomyces Boulardii (Ortho Molecular brand) probiotics… and also a good, high-quality potent probiotic every day. Many of us, including me, have found remission through alternative medicine and diet… UC is tricky, though, as it affects everyone differently. Some people find lots of relief from acupuncture, but that doesn’t work for me. I take Bastyr Formula B (http://www.amazon.com/Bastyr-Formula-Eclectic-Institute-Caps/dp/B000POS92W), probiotics, turmeric, Vitamin D and a bunch of other things and that works for me. I also see a chiropractor, an Herbalist, and a Naturopath. Then there is DIET, which plays a HUGE part for most people with IBD… there are many different choices: GAPS, Paleo, SCD, AIP… but the one thing they all have in common is that they are anti-inflammatory. So… no gluten, no corn, nothing processed, focusing on whole foods. Some people can eat dairy, others can’t. Your daughter will need to figure out her “trigger” foods. I support you getting a second opinion… more information and more points of view can’t hurt. Hang in there! Hugs from Minnesota.
Thank you Polly for the great advices; it is very much appreciated. The cdiff was controlled with oral vancomycin and hopefully won’t come back ever again. Although I heard it is common with people with UC. I will keep praying that my daughter will not have to go through this nasty cdiff. Las for her diet, she is tolerating a bland diet, chicken and eggs, rice, non dairy products. No bread. She’s also taking Vit D, multivitamins, prednisone 20mg a day and iron 3x day.
Hi Ingrid,
I am just coming out of a situation like yours except that my son is 13 and was diagnosed in 2014. He has had 4 hospitalizations in 4 months. Had his last one in August for 23 days, came home and after 2 weeks went back to the hospital with C diff. Another 10 days in the hospital. He was on Humira for 2 mo. But it affected his central nervous system and he was not able to walk with weakness, numbness, etc… He is now on 30mg Prednisone and Apriso. I believe though that what has made a huge difference was an alternative treatment we started last month. Within 4 days he had his first formed stool.
Lemus Natural Medicine, in Miami. My GI doctor also spoke to me two days ago about EnteraGam ; it is a nutrition drink with bovine protein that helps heal the lining of the colon , consequently reducing/stopping diahrrea. It is a prescription nutrition drink. She said it has been working for her other patients and wants my son to try it if needed.
I am really sorry for what you are going through, it is really difficult to see our children suffer like this.
Hope this info has helped some
Have a wonderful week.
i agree with Polly!
It is trial and error to figure out what works for each person. I suggest you keep a daily food diary. It is important to keep your childs stress level low- yoga, meditation, visualization or whatever your child may like to help keep things calm.
I wish you and your child well in this big learning process of this crazy illness.
Thanks Joanne!
It is very important for us to learn the best diet for our daughter. Indeed, she would have to try and see which foods are good for her. We will definitely try yoga and relaxation techniques to help her with stress.
Hi Ingrid,
Very sorry to hear about your daughter. As a mother of 3, I know how difficult it is to see your child in pain. I am an integrative health coach and have had ulcerative colitis for 6 years. I have never been on medication with the exception of a week on prednisone. I use diet, supplements and stress management to deal with my condition. I have had 3 really bad flare-ups in the six years. One lasted 5 weeks and I was using the bathroom 30-40 times a day. It was hell. This is a condition that is very difficult to figure out but I have proven that it can be controlled naturally. If you’d like to learn more about what I do as a coach and what I do for my condition feel free to contact me at redspot1971@gmail or look me up on Facebook at Menu to Health.
Sincerely,
Luz
Thsnks Luz!
I will definitely contact you for future coaching. the information you gave us it is very helpful. She is doing much better with remicade she’s up to her second dose. We are very thankful for the positive inputs and advices from this site
Thank you
Ingrid A.
I was diagnosed at 19 and spent my 20th birthday in the hospital so I understand what it feels like to deal with UC at a young age.
Unfortunately there are no straight answers on treatment. There is so much variety when it comes to this disease. I have tried everything you can think of and more and can share my experiences and provide some insight.
Things didn’t work out for me and I was forced to have surgery about a year after symptoms started. However, many people feel great when they find the right treatment.Surgery is rough but right now I feel good (aside from prednisone withdrawal symptoms). I honestly never thought I would feel normal again so there is definitely hope.
If you or your daughter have any questions or just want to talk feel free to email me. Nothing is off limits with me, and I am always honest. My email is iamjakeocallaghan@gmail.com if you want to contact me.
I wish both of you the best. I know this can be extremely challenging, but the beginning is often the worst.
Hi there my name is Pawan singh. I have UC since 1 year and half. I have bleeding in stool. I don’t know what to do. All I Know is that there is no cure for this and I am worried about this so Is there any suggestion please help me to get rid of this. My email is malhijatt.pawan@gmail.com
Thanks
I was sick for a number of years before I was diagnosed with in the 9th grade. I ran a gambit of hospital stays, meds, pain, stress. I am 55 years old, had my colon totally removed 10 years ago, followed by another surgery to connect my pouch using my small intestine.
I am not using medical terms because I think it could be overwhelming and miss my point.
I had two healthy children in my early 20’s, I did have a couple of miscarriages and some complications I can’t directly relate to UC. I actually went into a period of pain and symptom free during my pregnancies.
I was never able to find any dietary changes that really helped one way or another.
After the medications became ineffective and my tests started showing signs of displia or cell changing I said let’s take it out. Not an easy decision or process. I won’t kid you there were troubles….but looking back ten years later
I still can’t find a diet that works but I am not having bloody painful stools all day and night. Frequent yes. Gas pain is high but manageable.
I suffer from a lack of energy but my iron etc is find. I feel like I am hungry all of the time. But these are both livable because no pain, no cancer risk.
Interesting final note my immune system changes every couple of years and my food tolerances change as often. I start getting fluid retention, sinus troubles and infections. I do a blood draw test and it id’s my current bad food list.
Bottom line, surgery isn’t the worst option.
hello Ingrid. my name is Marc 29, and im also in the nyc area (harlem) let me get to the point. i have been on all medications including remicade with my UC and honestly i dont think any of these medications helped. i think the inflammation goes away when it wants to and comes back when it wants to. i dont think theres no diet/food that triggers or prevent anyone from flareups. these flareups are like herpes, it goes away for either a short or long period of time but trust me its gonna come back lol but all jokes aside. i have been admitted in the hospital many of times, st.Lukes, Lenox hill, mt, sinai. you name it i probably been there. bottom line surgery was the best thing that ever happened to me. i recommend it to everyone. when you have uc you dont have no life. you cant make plans,trips, it can also cost you your job and to miss out on school. i had to drop a semester at bmcc because of uc. instant cure. i had the bag for 3 moths and they reversed it and ive been fine ever since. i got to the bathroommaybe 3 to 4 times a day. morning, before i leave for work, after lunch, and when i get home. if your interested to know more about my experience feel free to ask
My daughter was DX with Ulcerative colitis 10 weeks ago after completion of colonoscopy. She is 22 years young and has always been healthy. She has even ate healthy. She started with diarreah in the beginning and then it progressed to abd pain, weakness and 31 pounds of weight loss. She has had ER visits, episodes of passing out, blood transfusion, ICU admissions and has been on Uceris, Lialdia, and now on Prednisone and pain meds. She has also started Biologic treatment (Entyvio) with her third infusion next week. We are hopeful to see some healing after that. She has been referred to Vanderbilt but cannot get in for eight more weeks. I am very worried and concerned for her.