As the Toilet Paper Roll Spins…

46 year old with colitisIntroduction to Trisha:

I am a 46 year old female diagnosed with ulcerative colitis 10 years ago. I have had many small flares ups since 2008 and just recently I have had the worst major and long running flare-ups. 2008 was total denial and the recent was due to incredible stress from child’s illness. Poop and poop jokes are the way we get through – this website is right up my UC alley!

My Symptoms:

I am just wrapping up the second worst episode since 2008. My daughter had four surgeries in one day, including a brain surgery all while going through a divorce. Top that off with an executive level job and let’s say the episode was inevitable. I had bleeding, pain, vomiting from the spasms, exhaustion, dehydration, fatigue, joint pain, etc. with the most humiliating experience of pooping my pants in the middle of Panera bread. I have been close before but this was the real deal and humiliating beyond belief. Today I am down to 1 1/2 of the Pred and 3200 mil of Asacol HD. Reacting well to the HD. The Pred just beats up my body and seems to be less and less effective during even my minor flare ups.

My Story:

Symptoms started in 2006 but was told I had IBS. 2008 I went four months in agony, bleeding, stomach spasms, vomiting, dehydration, you name it I had it. Raising a pre-teen and trying to maintain my job was nearly impossible. Finally found a great doctor that put me on meds and a suggested diet and I found sweet relief immediately. Through trial and error along with food journaling (of course my Asacol) I have been doing well from 2008 until six weeks ago. Prior to this episode – eight months with no flare ups and limited minor flare ups previous to that.

I really felt like my life was “normal”.

I have cut out all dairy (this has been key-using Almond Milk), caffeine, almost all sugar (not going to lie) and limiting the green veggies and using a greens powder to get the nutrition. I have found eating four to five small meals a day has helped. Taking my Asacol daily and the Prednisone only during minor flare ups. Overall my nutrition and iron is holding strong and I am in great shape. I do have an occasional glass of red wine or a beer but only if I have no existing symptoms. I may have a small amount of organic red meat (4 oz) when my body tells me but cut out all other forms of red meat. Eating green veggies daily is not possible for me as I can not process them. I have to space them out.

I have read varies opinions on alternative remedies but hesitant to try anything as to not get false hope or make things worse. However, the Aloe Vera has perked my attention. I would love some feedback from folks that have used it for 6 months or more-both positive and negative. Is it worth trying?

Where I’d Like to be in 1 Year:

I would love to be off all prescriptions and living a life not centered around locating the nearest bathroom “just in case”. Going to professional sport events, taking long hikes with the dogs, being free of pain and having a care free sex life with my mate. Let’s face it, UC does interrupt that at times.

Colitis Medications I’ve tried/taking:

Took Colozal for several years before it stopped working, switched to Asacol for three years and worked well. Most recently switched to Asacol HD and on and off Prednisone since 2008.

written by Trisha

submitted in the colitis Venting Area



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aloe

12 Responses to As the Toilet Paper Roll Spins…

  1. Maggie June 8, 2012 at 5:52 pm #

    Hi, Trisha. I had used aloe vera juice faithfully, especially in the early stages of UC, back in the 80’s not knowing what I had and it worked great. As I’ve gotten older and since I’ve quit smoking, my flares are worse and aloe doesn’t work for me. I spend a lot of money on supplements so I quit the aloe because it can be expensive. I’m not trying to warn you or anyone off of it because what works for one doesn’t necessarily work for another. I think natural remedies are great, it’s just finding the right combination along with diet, same as medications. More recently I’m using a mixture of 4 different powders, Bentonite clay, charcoal, black walnut, and slippery elm. I’ve been in a flare for 2 months or more and as of yesterday I’m finally doing better but coming off pred so have some aches. I also watch what I eat and do eat a lot of yogurt, I peel my vegies and fruits and stay away from red meat. I love seafood. A thought on aloe, it’s a natural anti-inflamatory so maybe it would help to prevent a flare, I think I’ll check into that now that I’m finally getting better. Best of luck to you, Trisha, and I hope your daughter is doing good.

    • Trisha
      Trisha June 20, 2012 at 6:07 am #

      Thanks Maggie. The Aloe seems to be helping but it is hard to tell as my doctor has but me on Asacol HD now at the same time I started the Aloe. So hard to sort out what works and what doesn’t and generally I try thongs when I am in a flare. So confusing! My daughter is doing well-thanks!

  2. Lynn June 11, 2012 at 6:19 am #

    Hi Trisha!
    I am currently using Aloe Vera juice….1/4c. twice a day on an empty stomach and it is helping me get out of a flare and off the Prednisone!
    When you buy your Aloe Vera juice make sure the aloin portion of the plant is removed because this part of the plant acts as a laxative….which you don’t want. The brand I use is George’s Always Active Aloe Vera Juice….it’s tasteless and has nothing you don’t want in there!
    Good luck to you!
    Lynn

  3. Lynn June 11, 2012 at 3:23 pm #

    Hi Trisha,
    Sorry I just read your post again and I wanted to clarify!
    I have not been taking the Aloe Vera juice for more than 6 months….however, for the past month I am seeing positive results with it along with diet, while tapering off of Prednisone and taking Ayurvedic herbs. Thanks to this website, I have been able to explore further options for the management of this condition (thanks Adam!) and was introduced to Ayurvedic medicine (thanks Alice!).
    Take care and best of luck to you going forward!
    Lynn

    • Trisha
      Trisha June 20, 2012 at 6:16 am #

      Thanks Lynn as I feel like the Aloe is working. This website is a huge help with so many different stories. The common theme I find is natural… Most doctor’s don’t even suiggest herbal supplements…

      .

  4. Lea June 12, 2012 at 6:49 pm #

    Yay! I’m not the only one who pooped my pants! :D Panty protection is a girl’s best friend!

    • Trisha
      Trisha June 20, 2012 at 6:18 am #

      I have done it at home but in public is just so embarassing! In the past 10 years I have sworn to never wear adult underwear well after that incident NEVER SAY NEVER! You are not alone!

  5. Blake June 12, 2012 at 8:17 pm #

    Hey Trisha,
    I was really excited when I heard about aloe products too. I was so excited I spent $160 on a bottle of AMP Floracel after searching the web for a miracle. The testimonies on this website were amazing, seemed like a miracle cure. I even called a guy that left his phone number on the website wanting to share his story. I called him up, we talked for an hour, this man had UC and told me AMP worked wonders for him. Anyway, fast forward, I started taking AMP Floracel religously, along with my prednisone, Lialda and combined with my diet. Long story short, it didn’t work for me, ended up getting my colon removed anyway at 30. Sorry, I know that’s not what you wanted to hear, but it does work for some people I guess. Anyway, I’m still happy I don’t have my colon and I would do it again. I still have 2 more surgeries to go till I have a J pouch, 2nd surgery coming up in 2 weeks. I also wanted to let you know I have crapped my pants also. One full blown shit on my drive to work one day and several other times trying to make it to the bathroom, luckily at home. I hope you’re able to figure out what works for you. Good luck!

    • Trisha
      Trisha June 20, 2012 at 6:23 am #

      I appreciate you sharing your honest story. I want to hear all of the various stories as one thing I have learned is UC and diet vary from person to person. My body won’t tolerate some of the things I have heard and tried on here. I am just relieved to find a site where I don’t feel ashamed to share my story. Wishing you the best of luck with your surgery!

    • Judy June 24, 2012 at 9:51 am #

      I tried the AMP Floracel about 5 years ago. It was very expensive and did absolutely nothing.

  6. Wendy
    Wendy June 20, 2012 at 5:46 am #

    I’ve tried Aloe Vera juice. No special kind, just what they were selling at the health food section of the grocery store. I don’t know if it made a difference because I also tried a bunch of other supplements at the same time. I think aloe helps absorption of vitamins and if your colon is affected, this may help absorb vitamins you otherwise would not be able to obtain. Overall, I did get better without drugs using supplements and aloe was one of them in the pile.

    • Trisha
      Trisha June 20, 2012 at 6:25 am #

      Lily of the Valley Aloe seems to be helping me some. I can’t handle many green vegetables so the powedered greens are really helpful. What other supplements are you using?

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