Ulcerative Colitis Tips


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Young, Healthy Entrepreneur Stopped My Tracks

Introduction:

My name is Amanda. I will be 27 this year. I have been healthy my entire life and have always eaten freely without consequence. I was diagnosed with mild pancolitis two weeks ago. I had my first colonoscopy three weeks ago.

Some more about me:

I graduated Arizona State University with a Bachelors of Science specializing in Marketing.

I studied abroad in Florence, Italy.

I now own and operate a food truck in San Francisco, which sells Neapolitan wood-fired pizzas. We operate 7-days-a-week in a semi-permanent location in Fisherman’s Wharf, so technically we consider ourselves an outdoor cafe. I not only run the business, but I am the head pizza chef. It is a very physically demanding job. While I am working I am constantly moving and on my feet. While the job can be at times stressful, like any other kitchen job, it gives me great satisfaction to see the reactions of my guests. This job has required many long hours, almost everyday. It has been very difficult to make the necessary adjustments to my work-life after being diagnosed with ulcerative colitis. We currently have one of the highest rated pizzerias in San Francisco. I have two spoiled chihuahua mix dogs, Rollo and Peanut. And I am engaged to be married to my live-in boyfriend, AJ.

Symptoms:

Approximately 6 months ago I saw my first symptoms of blood in my stool.¬† It was very infrequent, so while it disturbed me, I didn’t address the issue.

Two months ago my symptoms became worse and worse. I had finally made appointments to see professionals (family doctors, Colorectal specialist, GI…), but had to wait a week or so in between appointments. By the time I made it to the GI doctor, I was in full flare, I was having 10-15 bloody diarrhea stools a day with horrible cramping and urgency.

He prescribed Mesalamine (3x 500mg per day), which was filled with Pentasa. I had also researched the GAPS diet and SCD. At the same time I started taking the Pentasa (except only 1 500mg pill per day instead of the 3 prescribed), I also started making home made broth. I was feeling exceptionally better that week. Almost every symptom had subsided. Even the blood had stopped for a couple of days.

Then I had the colonoscopy. The prep was pretty terrible considering the light diet I was already on. The hospital was great. The procedure went smoothly. There were a few biopsies taken.

About a week later the doctor informed me that I had mild pancolitis.

Ever since the colonoscopy I have not seen the blood stop. Many of the other symptoms have subsided; I did not have diarrhea, almost no cramping, urgency was no longer an issue. But, everyday I bleed, some days more than others. I have started taking the full prescribed dosage, no change. I started suppository medications, and I have yet to stop bleeding. I felt that I was constipated after taking the suppository. (i.e. When I go it is just blood and mucus, no fecal matter.) I chose to stop the strict diet because I did not feel it was making a difference after the first week. I am light to begin with, so the strict diet made me constantly fatigued and made running my business extremely difficult. I am supposed to go back to the GI doctor on July 1st. He told me that my next resort is steroids. I really do not want to get any worse, or have to try steroids. I just want to be normal again.

Food Truck Businesswoman with Colitis

UC has made me more solitary and less happy. Although I sleep about 9-10 hours every night, I do not have time for the rest that many others have the liberty of taking. I must run my business everyday. And even when I have help, I am stressed that they are not doing the job the way that I would. UC has helped me slow down to enjoy the little moments.

I am just anxious to see the blood stop.

I am curious about other’s stories of diagnosis and how quickly people have gotten to remission and how. I feel much better with the medicine, but seeing blood on a daily basis has really taken a toll on me. It is depressing and I feel helpless at times. Having a bowel movement now, almost puts me into a bad mood. I don’t even want to tell my fianc√© anymore that I am seeing blood. I have only had my butt probed twice now, once while fully awake, it was just the finger, and was extremely uncomfortable, but it ended quickly; second time was the colonoscopy and I was very out of it and didn’t mind the procedure, but the after-effects are still present. I felt the day or so afterward that the biopsies were what caused some mild discomfort afterward. I wonder if this has contributed to the bleeding I am still experiencing. My family is as supportive as they can be from another state. My grandmother has suffered with IBS her whole life and apparently she is symptomatic because she is worried about me. I am most concerned about the blood at this point. I know this is so unhealthy to be bleeding tablespoons at a time for three weeks now (and counting). How do I make the bleeding stop?

Medications:

Started with oral 500 mg / day Pentasa (Mesalamine), then upped to 1500 mg / day.
Added rectal suppository of Mesalamine daily.

Tried and gave up GAPS and SCD without any change in symptoms.

I used to drink a ton of milk, I am thinking I might need a Vitamin D supplement.

written by Amanda

submitted in the colitis venting area




5 Responses to Young, Healthy Entrepreneur Stopped My Tracks

  1. Adam
    Adam June 28, 2013 at 5:17 pm #

    Hey Amanda,

    Thanks for sharing your story. Had you written this six months ago, I’d walk down to fisherman’s wharf and hunt down your foodtruck. Maybe yank you out of there if you’re looking all stressed, and see if we could sit down for a cup of tea to talk UC. (No, just kidding, I’d never yank you away from your work that you obviously love and take great pride in, and sure sounds like lots of people are enjoying those pies too, congrats:)

    But really, I think you are pretty right on with almost everything you’re thinking.

    For example the colonoscopy and feeling not so great afterwards. Super common. Super pooper common. Like, most people say the same thing. Yes, it no fun feeling worse after the scope, but scopes sometimes need to happen.

    Feeling crappy and depressed when you keep seeing the blood come out. For sure, it sucks a fatty. And like you can for sure guess, everybody feels just about the same way when that is happening, especially when you haven’t fully come out of your first flare/diagnosis stage.

    Seriously Amanda, all the things you’ve mentioned are totally common, and you are for sure a perfectly human UC’er.

    One thing I for sure want to add is regarding diet whether SCD or not. The truth is diet changes don’t equal symptom changes overnight or within one week all the time. I for sure noticed positive changes within a few days of initially starting the SCD diet nearly 4 years ago (that was after a highly regarded GI in San Fran’s UCSF GI deptartment told me to talk to his wife who was/is a colon surgery doctor about getting my colon removed since no meds had worked up to that point…) But everyone’s different, and I think that when people try dieting type of treatments/therapies for a month, and if you still don’t notice symptom reduction, that’s a much more fair shot compared to a week.

    If I was you, and I know this is harder to do then to just talk about…but I’d seriously consider taking a break from your business. If in anyway that is financially possible, my advice would be DO IT. The whole stress reduction component along with conserving your energy may work wonders for you to help get you out of the symptoms you’re dealing with.

    NO matter what you end up doing, I WISH YOU the very very best. Your flare will stop soon, and you’re going to be back at it and ripping out the best pizza’s in SF (maybe the west coast) once again without worrying about bathrooms.
    best,

    Adam

  2. Chris from Massachusetts
    Chris June 29, 2013 at 8:56 am #

    Hey Amanda,

    First off just want to ecco adam’s comments above stress and the job. Not only that when you are in flares they tire you out so much. Man all I want to do is just lie down all day when I am in one.

    Thank you for your story. I was also recently diagnosed (2011). I was 29 at the time. I can definitely relate to you – what the heck you know? I was young, I never had to think about what I ate. It felt good to read your story because it made me feel not alone.

    I can say my experience so far is that diet can be very tricky. Sometimes you think you are safe and then Boom you see blood and you are like – “but I didn’t cheat” I tried SCD but I have found that does not go far enough for me. You (and others) will probably think I am crazy but I eat mostly meat now with the occasional piece of fruit (berries mostly). Stay away from too much fat (animal or otherwise) – at least for me too much fat and veggies are usually the culprits in my flares.

    I am on steroids now (prednisone 30mg) and I can say it is not that bad. At least the dosage I am on I have not had any major side effects. I do think my low carb, high protein doet helps with this though. Too many carbs (steroids or not) can cause anyones system to act up. I too did not want to go on them long term but I was bleeding too much and I had no choice. Hopefully I can get into remission and taper off them within a month or to. Feeling good now though which is always a blessing.

    I lost A LOT of blood over my two years and as a word of advice to make sure to get Folic Acid, B-12 and Iron supplements. Iron is not the only vitamin you have to make sure you get. Folic Acid and B-12 are also critical in red blood cell production. I take the Ironsorb Jarrow formulas capsule and break it open and add to water – I don’t care which Iron supplement you take I have always found them to be hard on my stomach. This is the only one I have found that if I open the capsule and mix the contents with about 16 ounces of water (with some lemon juice added for taste) my stomach can usually handle it.

    Hope this helps =)

    Go Us,

    Chris

  3. bev June 29, 2013 at 2:17 pm #

    Hi Amanda,

    Drugs never worked for me. I have had UC,(also pancolitis now) for over 15 years. I was on meds for 14 of thsoe years…and they were making things actually worse.

    I have been in remission for 14 months now, on NO MEDS at all. I take one ULTIMATE FLORA CRITICAL CARE probiotic capsule by RENEWLIFE, every day on an empty stomach and then don’t eat for at least half an hour. That seems to have restored my good bacteria. I also take fermented L-glutamine powder daily, also on an empty stomach…and that actually HEALS the ulcers in the colon! After a few days on that and there was no more bleeding!

    I can’t believe this either…I never believed in probiotics or anything else natural. I had no idea what UC was, so of course, I just listened to the doctors. I did everything they said to do. One drug after another (the UC merry-go-round I call it), and they all either didn’t work…or they stopped working. I think that’s because treating UC with drugs is not the way to go. The colon needs to HEAL. The drugs don’t address that at all. Most of them just knock the inflammation back for awhile, until that doesn’t work any more…

    Bev

  4. Caroline
    Caroline June 29, 2013 at 4:29 pm #

    Hi Amanda,

    I sure hope you get to feeling better soon! Reading your story made me want some pizza so badly, I can’t lie. But I’m in Charlotte, and I am using diet to help control my UC, and so me and pizza can’t hang anymore. Sigh.

    I get the bathroom anxiety – what happened in there in the morning determined my mood for several months. I was diagnosed in January with severe pancolitis, and it is miserable. I went on prednisone for 2 months to get it under control, and I believe that it calmed things down enough for the other things to take effect. The blood WILL go away – mine did! I still had mucus and that continues off and on. Every once in a while it’s tinged with blood – I try to not let it bother me too much. The more I worry the worse it gets, and I want to enjoy my life!

    For me, I have had success with a paleo diet- I stick to it 100%. I’ve also incorporated bone broths and fermented foods, as well as VSL #3 DS. I take l-glutamine every day, along with Chinese herbs from my acupuncturist, vitamin d drops, fish oil, and astaxanthin. I have tried a myriad of other things but this is the combo that works for me! I also take Apriso but will be weaning off of that within the year. I do drink alcohol in small amounts and do okay with that – many people can’t tolerate that but I seem to be fine if I keep it light. :)

    Feel better soon!

  5. OrdinaryWorldWhereRU June 29, 2013 at 7:22 pm #

    Hi Amanda,

    I am on Remicade and Delzicol. I used to see a small spot of blood every day but now I see it less often. I take a myriad of supplements from ProCaps labs and none of them bother me but I have chosen carefully which ones I will take. I have found that adding organic yogurt to my diet along with whole food green smoothies and other smoothies seems to have helped my symptoms. Pretty much my BM’s look normal 80-90 percent of the time unless I have caught a bug or am feeling a lot of stress. I also eat light yogurts that aren’t organic. I use a Vitamix to make my whole food drinks comprised of baby greens, kale, apples that have been seeded, and peeled oranges. It looks unpleasant but tastes pretty good. I will also juice fruits and vegetables to make a green drink. My pain or discomfort is very infrequent, if not rare. I have shared all of this, and others will share their experiences, to show that what works for one person may be very different than what works for another. So don’t feel obligated to do one thing or another because of what works for a person, just do what works for you which is going to require some experimentation and patience. I have found that stress definitely makes things worse. You will get to the place where things are more settled. It will come. It is important to be honest with yourself about your symptoms and how you are feeling. Ignoring it can be detrimental to your health. In other words, be nice to yourself. You deserve it. (And if you want to throw a duck fit that you got this disease and it is totally unfair, have at it. You earned that moment.)

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