Ulcerative Colitis Tips


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Help from UC Patients Who Have Been on Remicade

Hinda L fMy daughter was just diagnosed with Ulcerative Colitis.

She is the oldest of 6. Some of my other kids have Gastric issues but we were very surprised with this diagnosis. I’m currently trying to adapt to the lifestyle changes she is going thru.

She is 17 years old, and was diagnosed at the end of June this year. Pain, bloody diahrrea, tired, swelling from prednisone.

Hinda’s Daughter 17 and Just Diagnosed with Colitis

My daughter was having bad stomach pain and bloody stools for weeks. I called our family GI an they made room for her right away. After stool cultures were normal and blood work showed signs of infection, we were headed for endoscopy and colonoscopy that confirmed UC. she was prescribed asacol and prednisone. asacol was not approved by our insurance so apriso was given instead. she had horrible pains after taking it much worse than before she started, so i mentioned it to the dr and it seemed like the meds were not working well together. our gi told her to stop taking it and we increased the prednisone to 60mg and added flagel. the horrid pain subsided and her frequency to use the bathroom decreased and bleeding too but after 4 weeks we did blood work and it didnt show much improvement of her condition. she is eating very few foods she is lactose intolerant and as she is afraid of fats fiber salt sugar and sulpher etc.. bread, rice, lean fish lean chicken. life has been so rough and shes feeling so bleak., and nothing with tatse to eat. Any recipe ideas??

Anyways back to my question, the doc wants us to start remicade. We are ready, but my question is we are from NJ and have been spending the summer in florida, the atmosphere has been good for her down here. So she will travel to NJ for the remicade but how soon after her first dose would you reccommend her being able to travel back to Florida? For all of your experiences with the infusions.

Finding out about this UC site is so comforting knowing there are others here going thru similar things!! we have felt so isolated this summer. I started looking for support groups and came back with nothing in our area.

We have cut out so many foods. Dairy, Egg, oils sugars salts fruits vegetable. We see slight changes.
The prednisione is causing aches and swelling.
written by Hinda
submitted in the colitis venting area

 




19 Responses to Help from UC Patients Who Have Been on Remicade

  1. Polly
    Polly August 8, 2016 at 5:21 am #

    Hello Hinda,

    Sorry to hear that your daughter has been suffering. You mentioned cutting out many foods, but you didn’t mention gluten. Gluten is often the #1 culprit and food intolerance in those of us with IBD. It’s good that you also cut dairy. She should also avoid corn.
    As far as recipes, she should eat plain, soft foods for awhile… spinach or zucchini sauteed in coconut oil, pureed yams or squash, drink bone broth… She can have cooked pureed veggies, maybe she’ll be able to tolerate split pea soup, plain applesauce, etc.

    Yes, the side effects of Prednisone are awful. Hopefully she’ll be able to come off it very soon.

    Has she been tested for C Diif and is she taking high doses of a quality probiotic everyday? (Such as Primal Defense by Garden of Life)

    I don’t have an answer to your Remicade question. Personally I can only say that I would only ever put my child on Remicade as a very very very last resort, as it increases susceptibility to all sorts of other problems and has been linked to cancer (http://www.remicade.com/hcp/).

    • Hinda L
      Hinda August 8, 2016 at 3:06 pm #

      Thanks for your reply. We started off right after her diagnoses on a gluten free diet. It seems that any thing whole or with seeds irritates her. so no quinoa or brown rice no corn. it seemed that there was nothing left to eat. The nutritionist at the g.i department said that there was no sign of celiac and we shld put gluten back in her diet and limit the whole foods and seeds. so it was back to white breads and rice, which she never liked, but she does tolerate. the coconut oil feels to heavy for her, as does anything with fat. boiled zucchini and other veggies are ok but don’t taste too good.
      good point about the c diif. I will ask the doctor.
      we recently started 2 capsules of culterelle. Are there better ones out there?
      I have looked at the risks associated with remicade and im concerned but we are desperate for relief and there isnt anything else that will work quickly. The doctror mentioned 6mp as a possibility but after her recent labs its not preferred now. we also discussed the possibility of a weekly shot. I forgot the name of the medication something with an M used mostly for cancer patients. Remicade has a lot more proven results. As a mother I hope this is the right decision…
      thanks again

    • Victoria August 8, 2016 at 3:31 pm #

      I had remicaide done and flew the two days later. No problem on that. I have huge diet issues too. So far I eat a lot of white rice, organic grilled chicken, wild caught salmon and organic beef. I eat a banana a day and lately break cause I want something sweet but wouldn’t recommend it. Of she needs it like I do, look at the ingredients, you don’t want preservatives for sure! Not sure why but vancomycin has helped me even though I was negative for c diff

  2. Christine August 8, 2016 at 6:21 am #

    Hinda, I just finished my 7th or 8th infusion of Remicade, and it has done wonders for me. I noticed a remarkable difference after just my first infusion. You do have to have a couple of loading doses at first, though. I got my first infusion and then two weeks later got my second and then 4 weeks after that got my third. Then you start going every 8 weeks. It also makes me very tired the day of the infusion and for a day or two after, but everyone is different and the medication affects everyone differently. Not sure what that means for your daughter traveling back and forth, but just some things to consider!

    • Hinda L
      Hinda August 8, 2016 at 2:55 pm #

      So glad to hear. She is scheduled for her first dose next week Tuesday. Hoping for the best

  3. Shelly August 8, 2016 at 6:34 am #

    Typically the first dose is actually 3 doses. Each 2 weeks apart. Then the regimen is every 6-8 weeks depending on severity. I noticed immediate change once I got on Remicaid. Within a few days I felt so much better (I was in the hospital for 8 days and on IV prednisone and Flagil- both scare me because of their strength). I’ve been on Remicaid now for 2 years with full remission right after beginning treatment. Ive only had 2 very small flares that were quickly righted with 60mg prednisone taper. Im not making any diet change, except removing liquid milk. I try to keep stress way down.
    Remicaid also has an assistance program called REMISTART to cover all but $5 of the med cost (no infusion administered cost). It’s really pricey even IF insurance covers 70%. It’s a lot of paperwork and keeping track but it beat $10k every 2 months.
    Good luck with this path.
    I’ve decided to take a mini break after 2 years just to see what my body does on its own without Remicaid. So far so good.

  4. Hinda L
    Hinda August 8, 2016 at 7:00 am #

    Thank you so much for your reply! Good luck with your break. I hope your body continues to behave.

    • Shelly August 8, 2016 at 2:10 pm #

      As an FYI I have also been on probiotic religiously and just began taking tumeric in supplement form. Any good bugs Are a huge benefit while on prednisone and heavy antibiotics. Best of luck!

  5. Hannah August 8, 2016 at 8:49 am #

    I started on Entyvio and after about 4 or 5 treatments, I was not getting any better. I was also on 40 mg of predisone. I have been on prednisone for over a year now. I started Remicade about 2 months ago. I went through the first 3 treatments and I can already feel a big difference. I just got a colonoscopy a week ago and I am now in remission. I have been tapering off the prednisone (thank god!) and am now at 10mgs. Remicade so far has been amazing!

    You have 3 treatments at first. The first one, then 2 weeks later, then 4 weeks later. After that it is every 8 weeks. So, she could go back and forth but she’ll have to go back after 2 weeks. I see no issue with her traveling though. Everyone takes to every medication differently but if she starts to feel better right away, it is a good sign :)

    I hope this helps!

    • Hinda L
      Hinda August 8, 2016 at 2:54 pm #

      yes. we just started probiotics hoping it helps and i put turmeric inher food. I didnt know it comes in a capsule. I will look for it thanks!!

  6. Britt August 8, 2016 at 1:13 pm #

    I’ve been on Remicade since late February of this year and I felt better almost immediately. I don’t see why your daughter couldn’t travel after. They give you a antihistamine which is why some feel sleepy afterwards but I always ask for the non-drowsy option because I have to go to work. I hope it works!

  7. Ella August 8, 2016 at 2:51 pm #

    My daughter started Remicaid few years ago. It did help but not completely. She was flaring regardesly. I contacted dr Borody in Australia. He believes that UC and Chrons caused by MAP infection. He treats it with antibiotics. She is currently on 1,500 mg Rifaxamen and 250 mg Metranidazol. In about 2 wks on this she was in complete remission. Please do research. Don’t go blindly.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031217/?tool=pmcentrez

  8. Phil S. August 8, 2016 at 3:55 pm #

    Diagnosed with severe UC in Dec. 2009. On numerous meds with no lasting relief until put on Remicade in June 2012.
    Since then total remission. No side effects. A little fatigued after treatment …. But only for about 24 hrs.
    All body chemistrys are different & may react differently, but for me this has been a miracle drug.
    Best of luck. Hope it’s a success.

  9. MG August 8, 2016 at 4:14 pm #

    Real The boom Breaking the vicious cycle by Elaine Gottschall. You can find it in the Internet. It’s about dieting and carbohydrates and UC.

  10. Susan Reeder August 8, 2016 at 5:36 pm #

    I, like Phil, have been on it for 4 years. Within weeks I felt so much better. At my next colonoscopy, 9 months later my colon looked a lot better, very little redness, a lot of healing going on. I still have UC in the tissue of my colon but I have been in official remission for 3 years. The week before my infusion my joints ache, but I have arthritis and while getting the infusion my joints start to feel better. I feel better afterwards. Tired for the next 24 hours, but better.

  11. Mike August 8, 2016 at 6:18 pm #

    Hi Hinda,

    Sorry to hear that your daughter is battling UC. I’ve had it for 7 years. I was diagnosed with gluten, dairy, egg, millet, and buckwheat issues. It takes about six months to a years off of gluten to see a difference. Gluten is like glue, and does not leave your system really quick. If you go the biological route, consider Cherry Hill Clinic in NJ. They can help support your daughters immune systems while on the medicine. It’s IV nutrition. I’ve been on prednisone for a while, but I need to get off. Between my diet, supplements, IV nutrition and medicine, I should be able to beat the disease. Best of luck. Feel free to reach out if you have questions.. dcphillyboy@gmail.com.

  12. Lara G
    Lara G September 7, 2016 at 2:42 pm #

    Hi Hinda,

    I’m sorry your daughter isn’t doing well. I was on Remicade for 5 years. It worked wonderfully for me, but I just built up antibodies to it and had to switch to Humira. The first few Remicade treatments were fine for me. I noticed that I was a little more tired than usual but it helped me immensely. I don’t see any issues with her travelling back and forth, but the first few doses are a little more frequent. Once that’s done, you can go every 6 to 8 weeks.

    Give it a try! I was in a horrible flare and Remicade was the only thing that got me out of it. Good luck!

  13. Kim May 10, 2017 at 12:21 pm #

    Hi, much like you my son 16 soon be 17 was diagnosed with UC. He was just in the hospital for 6 days. During his stay his GI dr decide to start Remicade because the steroids where not working at all. He feels a little bit better, he will be getting his 2 nd infusion in a couple days. The previous replies about Remicade makes me hopeful! He has been through so much the past 2 months including missing school. We are really trying to cautiously optimistic. We have a major dilemma with the foods he can eat. Right now he can only tolerate the Ensure protein shakes. He was never a big fan of vegetables… Does anybody have any suggestions for meals without veggies or fish? ( he will not touch any kind of fish)

  14. Lara G
    Lara May 20, 2017 at 8:29 am #

    The first 2 doses are given 2 weeks apart, from what I remember. Then they are given every 6-8 weeks thereafter. I loved Remicade!!!! I was on it for 5 years until I built up antibodies to t and had to stop taking it. I’m on Humira now and that seems to be helping.

    I do hope your daughter feels better soon. I know how terrible a flare can make you feel. Oh – ask her GI if he/she wants her to be on any special diet while she’s flaring. Mine always puts me on a low residue diet until my symptoms decrease. Good luck!

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