Hi – I was diagnosed with UC when I was 22 years old, I had years of an up and down battle with remission that wasn’t unbearable to live with. I am now 28 and it has snuck up on me at it’s worst. I work full time, just recently engaged, and love to spend quality time with friends…especially over drinks or coffee! Something that I’ve had to stop recently. I has come to a point of confusion and defeat. I’ve followed the IhaveUC website, never posted, but have read through mostly everything as well as Adam’s book. Hoping to find some sense of peace from any and all of the advice you can share!
I live in Detroit, MI and work for a non profit organization teaching recycling education. I love my job! I also enjoy being active, I play soccer once a week and I was training for my first half marathon this year, which didn’t get to happen due to my UC. I try to work out as much as I can, but have recently lost so much weight that I’m scared to work out and risk losing more.
I just recently had a colonoscopy where the result was Pancolitis – inflammation of the entire colon. I had been bleeding most of the year, something not uncommon but would normally stop. It hadn’t stopped.
I am on the GAPS Introduction Diet and am still bleeding with diarrhea. I have lost an excessive amount of weight. Almost 30 days in the Intro and stomach pain and bleeding is getting worse.
A friend of mine heard about what I had been going through and knew a few people to do the GAPS Diet with success. He agreed to cook me my meat stocks and bone broth, which I gladly accepted! I started the GAPS Introduction Diet on October 12th and am now on day 27 with little improvement and have not been able to get past Stage 3. Just this past weekend alone I had severe bleeding. I had been doing ok with little bleeding and very little urgency throughout the first few weeks of GAPS, so now I’m even more lost and concerned about whether this is working or if I am making things worse. I also know you are not supposed to be on Stage 1 and 2 for very long. I eat meat stock soup with carrots and onions cooked for an hour with ghee and broth. I also have grass fed eggs with ghee and that’s it! I drink kefir milk in the morning, occasionally have yogurt and add fermented juices to my broths. I even drink the broth throughout the day. I’ve l ost 20 pounds and I feel terrible about myself. Were there any specific things you may have adjusted to the diet that helped you get your symptoms under control?
My GI prescribed me to take 20 MG Prednisone twice a day, something I said I would never do again, and Lialda after my colonoscopy. Both of which don’t seem to be working. He also recommended I do Entivyio, despite not having tried Anti-TNF’s prior. Has anyone else done that before? I feel like I am doctoring myself because my GI asks me what I want to do.
I really wanted to try and get through this the natural way, but am feeling pretty desperate at the moment but am scared about starting Remicade. I’ve come this far with the GAPS Diet that I feel it will be a shame to give up on it so quickly. But I don’t know how to manage my symptoms. I feel like I might be doing something wrong, but can’t quite determine what. I haven’t cheated and I’m trying to move slowly, I just can’t get the bleeding to stop. Has anyone had a similar experience with the GAPS diet not working because your UC was just too severe? I even started doing yoga, applying doTerra Pepperment Oil to my stomach, drinking ginger root water, scheduled a few massages and acupuncture, and take the GAPS recommended epsom salt and baking soda baths. I feel like there isn’t much else I can try at this point. I spend all day thinking about this disease and how it has so negatively affected my life in the last few months and countless hours resea rching remedies and things I can do to fix it. I feel like for me, there is nothing left to do but attempt Remicade.
Natalie’s Medications/ Supplements / Treatment
I started off with Asacol – which I never felt worked for me.
Rowasa Enema’s which did work but are not covered by my insurance.
Prednisone and gained a lot of weight a few years ago.
Lialda – I feel like it’s the same as Asacol and isn’t doing very much.
I am currently on Prednisone and Lialda.
SUPPLEMENTS: After reading many posts about how other people cured their UC with supplements and diet I purchased Vitamin D3 5000IU, Aloe Gel, Chlorophyll, Bromelain, Calcium, Probiotics, Turmeric, Ginger, and Fish Oil. I’m not trying to overdo it, does anyone have any advice about establishing a successful supplement regimen? I tried the Aloe and Chlorophyll this weekend and bleed more than I had a few days prior, so I decided to stop doing that until I managed my symptoms. I’ve now only been taking the Probiotics and Vitamin D3 along with my meds.
Can anyone with Pancolitis share with me what kind of timeline it took for you to get your symptoms under control? I don’t want to be impatient, but I feel very desperate and unhealthy with how much weight I have lost. Any advice and guidance is much appreciated!
written by Natalie
submitted in the colitis venting area
I live in Detroit, MI and work for a non profit organization teaching recycling education. I love my job! I also enjoy being active, I play soccer once a week and I was training for my first half marathon this year, which didn’t get to happen due to my UC.