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Just Hoping For The Best

RohunA Little bit about Me:

26 year old Financial Analyst. Diagnosed at age 24. Every medicine I have tried has seemed to be unsuccessful. Few options left- stem cell study, surgery, SCD. Started SCD diet last week and am just hoping this all works out

My GI Symptoms:

Last week it was 8-12 movements/day (2-3 times in the middle of the night). Blood. Movements looked like small crumbles or dust.

After starting SCD Diet + 40 mg/prednisone

4-6 movements/day. Very little blood if any. Some diarrhea. Movements are a little bit better but I wouldn’t say they are where I want them to be yet.

My Story:

In 2008 after 4 years of living a typical college life, I found myself leaving my hometown for a my first job- overweight and with high cholesterol. To avoid going on medicine, I completely changed my diet and started working out regularly. By the end of the year I went from 200lbs to 175 lbs. I was proud of myself and loving my new life. I moved again for work (part of rotation program), and decided I would start training for a half marathon. Life was good, I was healthy, enjoyed my work and my friends and in May of 2010 completed the half marathon I had set out for.

Literally 7 days later,

I woke up in the middle of the night

with sharp sharp pains in my stomach.

I went to the bathroom. My movement felt weird but didn’t think to look in the bowl ignored and went to bed. Only to wake up a few more times. That pattern continued throughout the day and following weeks. I couldn’t put any food down without running to the restroom. I was finally able to see a GI doctor who thought it might be UC but needed to do a colonoscopy to be certain. He scheduled it on the day of my 24th birthday (what a gift).

He confirmed it was UC. He gave me prednisone, lialda, and rowassa. Within 6 weeks, I felt like I was in remission, only to get another flair up in September. By then I had moved to Chicago. I was able to get a doctor at University of Chicago Gastroenterology center (great center and doctors). We added 6mp, stopped the prednisone and tried rowasaa. That worked on and off again for a few months, until I had a horrible flair up in May that lasted until September. Started Remicade. That worked for a month and then worked on and off again like the other medicine but never put me in Remission.

That brings me to today. My doctor, who I really like working with and trust, said I have two options left. A stem cell study or surgery. I am meeting with a surgeon in a few weeks to learn more, but I really don’t want go that route. I know people can live an amazing life afterwards, but I am not sure if I am ready to make that jump yet.

The stem cell study sounds interesting (http://www.athersys.com/Home/ProductCandidates/MultiStemforInflammatoryandImmuneConditions/MultiStemforInflammatoryBowelDisease/tabid/105/Default.aspx) in case you are interested in reading about it. It is only in phase 2, so not all the side effects are known yet.

I haven’t made up my mind on what I want to do yet, but I just started the SCD diet last week. I think it is working, but I am also on 40mg of Pred.

I don’t know where I am really going with all of this, but I am thankful for the site. This disease just sucks. I am single in my mid 20’s, all I want to do is enjoy life but I feel like I have already wasted two years being trapped in my apartment like a jail cell. Thinking of excuses for not being able to meet friends is mentally draining and depressing.

I am moving again in a month to start my MBA, I REALLLLY need the SCD to provide some relief otherwise, I don’t even want to imagine what school will be like. I am hoping for the best, not only for me but also for all of us who suffer with this disease. Hopefully we all reach remission sooner rather later.

Thanks for listening to me vent and best of luck to all!!

P.S- If any of you have had experience with the multistem drug, please let me know, I am curious to hear your thoughts.

Thanks,
Rohun

Where I’d Like to be in 1 year:

3 movements, no blood, not scared to step out of the house. Happy. And maybe, just maybe, working internationally for an internship.
Colitis Medications:
Lialda, 6MP, Rowassa, Remicade. Remicade clears up symptoms but never put me in remission. Obviously it works for a lot of people, I just was unlucky. Didn’t notice any side effects with any of them.

written by Rohun

submitted in the colitis venting area

Tags: multistem





12 Responses to “Just Hoping For The Best”

  1. Wendy
    WendyJune 7, 2012 at 8:41 am #

    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.

  2. LeaJune 7, 2012 at 9:57 am #

    I feel for you. Part of the reason I have the job I do is it is close to a bathroom and I am my own boss, so no one tells me where to go or when to go! When I tried SCD for 3 months and experienced SCD was still causing issues for me I fortunately found and am transitioning to the diet and practices in Self Healing for Colitis and Crohns. Not easy at first, and I’m still finishing of some yummy SCD muffins before I put this diet into full effect! Feeling good today! I went to a women in business networking group I haven’t been to in ages yesterday and only one trip to the bathroom! The natural dietary approach is not easy at first, detox symptoms, fatigue, better now, but it took days and WORST OF ALL yesterday I had to walk past a BUFFET of lovely GOODIES I couldn’t eat, sigh… I hope someday we all eat more natural, but hey, til’ then… Check out the study on Ulcerative Colitis and PC, google it. I want to know who has tried it too.

  3. DonaldJune 7, 2012 at 10:11 am #

    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.

  4. Rohun
    RohunJune 7, 2012 at 11:13 am #

    Thanks for the info and wishes Lea and Dave. I appreciate the support. I will check that diet out. I am really glad you guys are starting to feel better. Next week I have an appointment with an Ayurvedic doctor. I have heard good things about her and she even has some information about IBD on her website. I will keep you posted on how it goes. Eventhough I am meeting with a surgeon next week also, I think I am going to try some natural remdies first. I really don’t want to go to surgery without testing everything out first. Thanks for all your support!

  5. LauraJune 7, 2012 at 1:30 pm #

    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

  6. BevJune 7, 2012 at 4:47 pm #

    Hi Rohun,

    Yes, this disease does suck, indeed! And how…

    Gotta agree with Laura…try everything natural firts, especially a good probiotic!! It took TWO MONTHS for them to work for me (and I am now in remission!!), so please try them for at least that long. Then, you will want to take them forever! I promise you.

    Lucky for you if you can get into that stem cell research! That would be so awesome. Please let us all know, okay?

    Cheers…things will get better…I was in the worst flare of my life, and considering surgery…but I finally decided to give probiotics a try. If you’re doing the SCD, then you’ll probably get even faster results than I did!!

    Bev:)

  7. Dede CummingsJune 7, 2012 at 5:45 pm #

    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

  8. Lara
    LaraJune 7, 2012 at 7:22 pm #

    I haven’t heard of a stem cell study for IBD. It sounds really interesting. Keep everyone posted after you speak to your doctor about this. I think everyone here would be interested.

    Also, good luck with your MBA!! If you’re concerned about your symptoms becoming too bothersome, register with the Office of Disabilities.

  9. Trevor WJune 7, 2012 at 8:04 pm #

    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!

  10. Dede CummingsJune 9, 2012 at 3:56 pm #

    Rohun and Trevor, and all,

    The alternative, and holistic therapies really do help keep the body balanced, and probiotics are so beneficial . . .
    Hang in there with the SCD and alternative therapies…!!

  11. rahulFebruary 18, 2013 at 4:54 am #

    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.

  12. VicMay 10, 2013 at 1:05 pm #

    Rohun, I too am looking into and considering the stem cell study and surgery. I am very curious to here what you chose and what you have to say about it. I just tried to do an FMT (fecal microbial transplant) but it didnt work for me.

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