I’m 22 and I’ve had UC for 9 lovely years. Was diagnosed at 13, which of course helped me through my already awkward, mid-puberty stage.. How can trying to hide toilets full of blood, diarrhea 20x/day, zero energy to do anything with friends, losing a lot of weight which wasn’t there to lose in the first place (had a librarian thinking I was anorexic.. constantly asked if I had eaten breakfast and offered to talk to me about my “problem”), and fun mid-class accidents not help me fit in easier?! I mean having an accident even now, when I know what’s wrong and I’ve got my depends on/spare depends in my bag, is hard enough, but when I’ve got no idea what’s happening, no one to talk to, and no ‘supplies’? Horrible!
Anyways got it under control and it was smooth sailing for about 5-6 year.. but the last 3 years have been horrible with year long flares, meds, hospitals, and a bunch of natural healing modalities to try and control my disease.
Some more about me:
I’m very active when I’m not sick. Play rugby and soccer, and go to the gym. Of course, being sick makes you miss out on a lot and I’ve had to miss entire university rugby seasons, as well as trips to Las Vegas and the Bahamas to play rugby.
Currently I’m having D 10+ times/day with blood off and on.. sometimes none, sometimes an entire toilet bowl full. Terrible urgency and some accidents (only about twice/week… in my last flare it was 1-2X/day so I’m grateful for that!). Also having awful joint pain which hasn’t happened since I was first diagnosed: hips, then shoulder, and now both my wrists/hands, and I can feel it coming on in my knee!
9 Years of UC
My family/boyfriend have been so supportive, I honestly couldn’t have asked for more. For the first 6 years of my diagnoses I felt great. However, for the last three years it’s been a battle. I’d say my breaking point came two years ago. I was 20 years old, in the hospital with pancolitis for prednisone and iron infusions, already on salofalk and imuran. My doctor’s residents came in and essentially told me “you can no longer be maintained on Salofalk, your body seems to be becoming steroid resistant, and your white blood cell count is too low for you to continue on imuran.” I asked him about my options and he said “We can put you on a (I quote) ‘last chance medication’ Remicade.” And if that doesn’t work, I asked him fearfully? “We’ll have to remove your colon.”
Although it ended up ‘working out’ in that instance and I didn’t need Remicade or surgery, I will never forget thinking “I’m only 20. I could have 70 years left to live with this disease. If things are already stopping working for me now, there’s no way I’ll be able to live happy and healthy on medication for 70 more years. I have to do something”
I was done being a 20 year old girl who wore diapers every day, and EXPECTED to have an accident daily. I hated packing my survival kit of two extra diapers, some wet wipes, and plastic bags every morning (only to have to go home early anyways because I’d have so many accidents my diapers would be used up!).
I recently discovered the SCD and jumped right in (with the amazing help of my boyfriend who’s doing it with me just for support, and my mom, Nana, and Grandma who are making me soup and yogurt and everything else needed). I am currently on day 12. For the first 4 days I did the intro diet, but felt no better, so after that I have cut out all dairy and eggs. Now on day 10 I’m eating broiled fish, broiled lean meats, chicken soup, pureed carrot, pureed pearsauce, and about to introduce very ripe bananas. I’ve also been drinking 50/50 water and welches grape juice, but limiting to about once a day. And if I’m struggling I might just eat a teaspoon of honey because I am having serious sugar withdrawal (chocoholic!!).
My symptoms now are the same as when I started, expect I’ve only been getting up about twice a night instead of three or four times.. though last night it was 5 times! And there’s definitely more blood than when I started. I’m not taking any meds or supplements (was on homeopathic supplements before but now I can’t figure out whether they’d be legal, so I just stopped).
George’s ‘Always Active’ Aloe Vera: does anyone know if it’s legal? It’s very different from other Aloe vera’s, it says they “remove the chemical antagonists such as the aloins and Anthraquinone that are mildly toxic” and “breakdown the mucopolysaccharide chain extracting the sugars in order to eliminate adding any preservatives and increase shelf life.” Since I stopped taking it to go on SCD I’ve noticed a large increase in bleeding so I’d really love to start taking it again!
Has anyone had experiences where they’ve felt no difference after 5 days on the intro diet and then 7 day slow reintroduction (also cutting out eggs and dairy)? And perhaps eventually started feeling better and now feel wonderful…? Maybe just wishful thinking, but I need some “Don’t give up, the same thing happened to me and it gets better..” type encouragement!
I know 9 years of UC will not be cured in 12 days! However I am hoping to see some positive changes, just wondering when I should start seeing some…
Medications and Colitis Diets I’ve Tried:
I’ve been on Prednisone, Salofalk, and Imuran, but I’m currently not taking anything.. I maybe should be doing this with the help of medication, but after 9 years I’m tired of putting that junk in me!
I have tried many things: craniosacral therapy, reiki, bodytalk, visceral manipulation, acupuncture, homeopathy, gluten free, Jini Patel’s ‘Listen to your Gut’ elemental diet and remedies.. Here’s my thoughts on what’s been the most helpful:
Georges ‘Always Active’ Aloe Vera Juice: has always kept my bleeding under control. In my last flare, I started taking it after about 3 months of toilet bowls completely filled with blood. Was on no meds, and the bleeding was completely gone in about a month.
Visceral manipulation: I go to a wonderful licensed chiropractor for this. When I first started going, she could barely touch my stomach, it hurt so much. Within a few months I felt no pain during treatment. My stomach aches were also completely gone! This was great… except for the fact that I now had almost no warning when I needed to go the washroom because my stomach felt great!
Jini’s elemental diet: I don’t believe I gave this a true chance.. I only did it for 2 weeks. As Jini says, you should do it for six, and most importantly you shouldn’t do it when you need to work/go to school. Well I started it during September as I attempted my first semester of nursing school, so six weeks just wasn’t reasonable. I did feel better, but as you’re drinking only liquid, that’s all that’s coming out the other end (without warning) so you truly do need to have a break from any life demands during this time.
written by Chase