Just Hoping For The Best

I’ve never heard of stem cell research before for UC. I will have to look into it. That’s rough moving all the time and being chained to the toilet. I know what it’s like to be chained to the toilet. Best of luck with your UC. I hope the stem cell thing works.

Hey Rohun, you really tried most of the meds in quite a short time. Have you thought about some alternative way in addition to your current meds? I think about acupuncture. I tried that and it helped me. It was a very interesting experience too. I might not do miracle but it might help a bit, at least veining out from steroids. (never leave or stop meds suddenly or at all even if the acu doctors advise so). google for it, and you will see that there are/were experiments to treat UC. I really hope you will get better and you can avoid surgery.

Thanks for sharing.
At the moment i am drug free, after one year of Remicade, at the moment i am following mainly a vegan diet and I can tell the difference with I eat normal white bread and pasta. I also have a big benefit from probiotics, VSL#3 and real aloe..Reiki has also helped me a lot..
Try alternative methods before considering surgery!
All the best

Laura

Hey Rohun, I have Crohn’s-Colitis, and had two feet of my large colon (Sigmoid) and about less than one foot of my terminal ileum removed in 2006. In remission. I am on Pred now for, get ready for this: SEVERE poison ivy!! I have been in and out of the ER and really laid low for two weeks. The Pred makes me more constipated…but I am drinking tons of water and now getting back to feeling more normal. The reason I am writing is, I really did well after my surgery (I was so scared before, but put my trust in my great doctor at Dartmouth Hitchcock, and worked with a naturopath the whole time and still do). I got out of the hospital and weighed only 117 (naturally, all my life, I had been trying for the unattainable ideas of thinness in our culture, and was final stick thin and almost died!)….now I weigh 140. The surgery saved my life. I wrote the book, Living with Crohn’s & Colitis, to say “thank you” and help others. If I were you, I’d do the SCD and tons of alternative therapies. The study looks really promising, but you may get the placebo, so you really have to be disciplined with your diet, rest, exercise, try acupuncture (at least 5 times to see), massage, therapy, maybe even delay Bschool for one year (I know!!! but your health is super important!)….

I just emailed a Dad of a daughter who is a dancer and very stressed…. Maybe this will help you diet-wise, and keep the faith and don’t give up!

Stress can also bring on flares. I always ran a fever when I had flare-ups, which was a drag/low-grade kind.

One question–Pred, are you taking WITH FOOD? That helps the gut. Additional yogurt with live culture is good, too. LOTS of fluids, keep your diet down to clear liquids for the first 24 hours after a flare (organic chicken broth, water, diluted juices). If you feel better after 24 hours, then you can move on to foods like white rice, steamed well-cooked veggies, apple sauce, and bananas. …. and of course baked chicken for protein, or salmon, or other cold-water fish (sustainably harvested, and not farm-raised)

Boosting yourimmune system is important…

I get vitamin C with Bioflavanoids, which I take daily… I am also into garlic, but tell Abby I have no friends when I eat garlic ; ) I take probiotics, Vitamin D (I need B12 shots when I was in montly flare-up time, as my body could not absorb Vit B, and now I do not have a terminal ileum, so the docs at the GI clinic and my naturopath always check my B vitamins.

I, too, am a dancer (well, too old now, but in the past, and ballet)…. so, it is important to practice some gentle yoga, and breathing exercises to help relieve stress… In my book, I talk about Spinal Chakra breathing….and meditation to reduce stress.

Rohan keep in touch!!! Keeping your immune system boosted is going to help in the long run–with Crohn’s/UC in a flare, you are more susceptible for sure. Take daily probiotics. I use the New Chapter, or Ultra flora powder.

The following suggestions are gleaned from my research, and own experience….Keep a food journal! DAILY!
Reduce sugar in any form. This may require you to slowly reduce your sugar intake over time as it is very addictive. I BASICALLY DO NOT EAY ANY SUGAR WHATSOEVER! :) That is awesome! really helps. Think monosaccarides, like honey, for sweetener, instead of trisaccaryides (I learned this from Elaine’s book, Breaking the Vicious Cycle).
Consider how processed your diet is. The aim is to eat unprocessed foods to give your body the nutrients it needs to work properly. MY MANTRA is “Eat food with one ingredient.”
Eating a good breakfast will make it easier for your body to balance blood sugar levels throughout the day. I eat Irish oatmeal, unsweetened—this is the best! I add a dash of maple syrup, and I use real butter, and cut up raisins, bananas, cranberries, all unsweetened and natural, and as much as possible organic.
Make sure the majority of your food intake is from fresh fruits and vegetables. These foods are cleansing to the system. Keep a food journal daily, and introduce foods one at a time (I could not eat CORN :(
Include whole grain foods and low fat protein (such as nuts and seeds, fish, lean red meat, eggs and low fat dairy products). I gave up WHEAT seven years ago!! Yeah! I don’t’ miss it at all, and now eat rice cakes :) Almond flour is good, and SCD-okay.
Eat four or five small meals throughout the day, rather than three large ones. This ‘grazing effect’ keeps your metabolism working at a higher rate throughout the day.
Try to combine a small portion of protein with complex carbohydrates, for example unsweetened muesli and plain yoghurt, or whole grain toast and egg. Some people need more protein with each meal. You might like to try having about a palm-sized serve of protein with each meal (especially, for women, the week before your period, as that can be a tough time when flare-ups happen). Healthy proteins include: lean chicken, lean red meat, fish, nuts and seeds, nut butters (like ABC spread – check out your health food shop) lentils, plain yoghurt, cheese and eggs.
Reduce your consumption of saturated fats derived from an animal source or a by-product of an animal such as: fatty red meat, dairy, pies and pasties, hamburgers.
Begin an exercise regime (at least three times per week) which includes cardiac exercise to improve the way your cells function. I also use a LOOFA sponge and dry brush my whole body before a shower—this really stimulates your cells and helps rejuvenation on a cellular level.

(FACTOID FOR ADAM AND MY PEEPS ON THIS AWESOME SITE: Did you know that there are more bacteria in the GUT, than there are cells in the BODY?!!!)

With regard to fluids, filtered water is the best thing to drink. You can include herbal teas, and every now and then diluted fruit juice. I find cranberry juice is a great refreshing non sugar drink, and I dilute with 3/4 water.
Don’t eat wheat! SCD diet!
Limit caffeine to one tea or coffee a day.
Avoid fried fatty foods.
Include chamomile or peppermint tea after meals to help relax the digestion and to relieve bloating and cramping. I HAVE PEPPERMINT or SLeepytime Tea from Celestial Seasonings DAILY…. with honey!
My best, Dede

Sounds so sudden, Rohun. My experience was on and off and then one day around late fall last year….it stayed ON. Just kept getting worse and worse, to the point where my vision was messed and I was having heavy breathing. Right now I still get those spells. I’m trying the SCD diet, but I’m missing one essential thing! Homemade yogurt! I will be picking up a yogurt maker soon. So far I’m getting decent results regardless of no yogurt intake. Less blood, mostly solids coming out. As for my health, I don’t feel so hot today…but some days I’m not bad. I figure once I introduce the probiotic yogurt, I will be in better shape. Don’t let your doctor talk doomsday! I’d ween yourself off the drugs and try to stick to the diet. Good luck man!

Rohun, any updates? How did the Ayurvedic treatment shape out? Have you identified trigger foods for your UC? Piccha Basti(medicated ghee/oil enemas) do help if you are looking for something to hold onto until MultiStem comes out. Although very few Ayurvedic doctors have command over Panchkarma(Basti is part of Panchakarma). If you can fly to India for 15 days, Dr Tambe does an effective Piccha Basti (ayu.de – select English Language from the left menu). Heard good things about Kerela Ayurveda too.