Ulcerative Colitis Tips


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It’s All So New To Me

Susan R fullIntro:

I was diagnosed October 2012, after months of symptoms that were strange to me. I had a colonoscopy and was diagnosed with Ulcerative Colitis, anemia, and internal hemorrhoids. This was in the middle of a very bitter divorce from an abusive spouse.

Some more about me:

I survived an abusive 10 year relationship and a subsequent 22 month divorce. I am a very independent single mother to two sweet kids. The kids and I love the outdoors and spend as much time as we can at our local park. I am an artist but have not painted in years for various reasons. Instead, my creativity comes out with daily experiences with my kids, such as napkin doodles in lunches or food pictures for dinner.

Symptoms:

Frequent, urgent bathroom trips (up to 30 times per day), tired, headaches, knee pain, blood in stool, stomach cramps, lots of bloating and gas. I also have almost daily headaches and I get dizzy spells.

It’s All So New To Me

I don’t have health insurance and am self-employed without the ability to pay for personal health insurance. I cannot afford the medicine my doctor prescribed at $2300 per month. I can only afford once per year doctor visits. I am very concerned about this. I am also concerned for the future; mine and my children’s; I’m scared of what will happen if I get worse. I’m scared of being sent to the hospital and not having health insurance I’m lucky that I can work from home but have had to seriously restrict any life out of my house because I am constantly in the bathroom. I fluctuate between acceptance and depression and am desperate for relief. I’ve had to turn down camping trips, concerts, etc. Most people don’t know I have UC and those that do, don’t understand. My family have been great listeners. I am afraid of new friendships and relationships because this seems to be a very consuming illness and I am reluctant to talk about it; I feel very embarrassed about it. I want to change GI doctors but without health insurance, no other specialist will see me. My current doctor is not available for anything! The day he gave me my diagnosis, all he said was “you have Ulcerative Colitis and here is a pamphlet”. I’ve come about most of my information via internet. He has given me no advice on supplements, diet, etc to help stave my symptoms, only telling me that I have a “rich man’s disease”. I am certain my UC was triggered by my leaving an abusive marriage and the long divorce which followed. As a single parent of two young kids, I am constantly busy and worried, which does not help my symptoms. I have no idea what to eat and am scared to eat anything. I’m a vegetarian, do not eat dairy. but I do eat eggs. I miss eating salads, beans, nuts, apples and other fruits and vegetables. I need help trying to figure out a good diet for myself.

Medications:

Canasa – I can’t tell if it is working or not
I take a ton of supplements – Probiotic (66 billion), Integra, Gas Relief pills, Multi-vitamin, Vitamin D (2,000 IU), Calcium, Folic Acid.

written by Susan R

submitted in the colitis venting area




6 Responses to It’s All So New To Me

  1. Ann October 8, 2013 at 7:49 am #

    Hi Susan, I am sorry you have UC. I have had it for 25 years. I have many posts on this great website. I am just getting out of a flare and trying the SCD for the first time. I think it is working but am also weaning from Prednisone and started taking Asacol. The SCD might be enough for those of you who can’t afford or don’t want to take meds which is my ultimate goal. I have also tried the evoo program but it seemed to be a temporary fix. I can relate to you on blaming the UC symptoms on a terrible marriage/divorce. I too, am divorced but married to my soul mate for 8 years now. I had UC in my terrible marriage and UC in my now very good marriage but maybe not as many. I don’t per se think it is the marriage but might be aggravated by stress. Good an bad relationships can have stress…it’s a part of life married or not. I think the UC is more connected to the food we do or don’t put in our bodies. Adam also swears by the SCD. I never thought I could do it but once I started it in the beginning of September 2013, it is not all that bad once you reprogram your mind and pantry to not have grains, sugar or lactose. I eat eggs, fruits, vegetables, meat and beans. Adam removed alcohol completely but I have 1 or 2 glasses of dry wine per day when I am not flaring and I think by body is okay with that. Good luck to you and feel free to comment to me and I will be happy to reply. You will be flying high like I see in your photo once again! Take Care, Ann

  2. Richele
    Richele October 8, 2013 at 5:00 pm #

    Hi Susan,
    First of all, I’m sorry you and your kids were in such a bad place for such a long time. 10 years in an abusive relationship is enough to make anybody sick, in more ways than one. I’m happy to hear you are on your own now!! Yay for strong single moms!!
    Flares can definitely be induced by stress, among other things, and it sounds like you’re on the right track thinking about changing your diet… Just gotta stick with it once you figure it out. A lot of people swear by SCD and I am pretty much Paleo, which seems to be working for me. The tricky thing is, what works for one might not work for another. Keep taking those Probiotics and try to relax as much as possible if you can. Quiet alone time with my two girls is incredibly relaxing for me. There’s nothing better than snuggling up with my two best loves and reading together in bed. :)
    Be well and keep us all updated.
    Richele

  3. Graham from England
    graham lee October 9, 2013 at 1:04 am #

    Hi Susan,

    Your story sounds familiar to many who find their way here. I arrived trying to share my breakthrough and help others but have learned lots since from this site (most of which a doctor won’t tell you).

    I would try a big spoon of extra virgin olive oil. Morning, noon and night. It is good for you and works as well as anything for my UC with the possible exception of smoking but that is a hard one to endorse for obvious reasons.

    Any benefit, however small is an important part of our future well being. It can be achieved without meds, they play a crucial part for many but are not a long term solution in my view.

    Good luck!

  4. Mary S
    Mary October 9, 2013 at 6:27 am #

    I am so sorry you are going through this. You have had more than enough stress for one person to handle alone. Hopefully now that you’re on your own the stress will be less.

    I certainly understand being scared to eat anything . When I’m in a flare I stick to fairly plain food like grilled chicken and sauteed veggies and smaller meals. The specific carb diet works for many but I haven’t tried it. Gluten and sugar can be culprits too. I completely gave up alcohol and wine because of the sugar content. I highly recommend the extra virgin olive oil regime that Graham Lee posted.

    If your doctor is unavailable and you can’t find another specialist, maybe you could find a doctor who is familiar with uc but not necessarily a gastro guy. The doctor I go to is not a gastro dr and he is very good. While this site can’t replace a doctor, there is a ton of great advice not found anywhere else.

    As far as insurance, if you are in the US you may now be able to get subsidized ins. You know even if the deductibles are too high to afford dr visits and meds at least you would be better covered for a hospital stay. Better to owe a $4000 copay than a $20000 hospital bill.

    Best of luck.

  5. Juliet
    Juliet October 9, 2013 at 5:40 pm #

    Hey Susan

    I totally can sympathize with the abusive relationship! Yes, stress does affect our health regardless of IBD. It certainly has help kick start a few flare ups in the past for me!

    I am originally from UK but living in Canada now! I was here as temp resident for the first 2 years! I met my now husband and we’re going through the residency application! I’ve no rights here. No Ohip, not entitled to any form of health insurance plan. We simply have to pay. And I’m not allowed to work! Stupid system. Plus there’s delays with CIC so it’s all taking way longer. Sux!

    I’m kinda surprised your not on prednisone if you’re going 30 times a day! I know steroids have side effects for long term. But they are cheap and they do have good results kicking a flare up in to touch. This would give your body a chance to start diet changes and try some supplements, EVOO, etc. this is my plan anyway as I have been flaring pretty bad this year!

    Epsom salt baths are so good for aching body and helps me sleep. Maybe you should take up painting again too, stress relieving.

    Hope it helps to know you’re not alone xxxx juliet

  6. Susan R
    Susan R November 18, 2013 at 8:57 am #

    Thanks for all the responses :) Since posting, I have changed my diet considerably by completely removing gluten. My diet is very limited now, as a long time vegetarian who is also lactose intolerant. I’ve been feeling lots better since removing gluten. I still have bleeding almost every time I go but I usually go less than 10X per day now. I am still using Canasa suppositories and take several supplements (calcium, magnesium, zing vitamin D, gas relief pills, multi-vitamin, folic acid, probiotic, integra). I’ve tried to swallow a tablespoon of olive oil but couldn’t keep it down, maybe I could try to mix it with something? My life is still very stressful but I am working on seeing more of the positives in life rather than focusing on the negatives.

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