Acceptance, Embarrassed, and Feeling Frustrated

Introduction:

I was diagnosed with ulcerative colitis back in July of 2011 and didn’t take it too seriously in the beginning because didn’t realize what a flare up was, just thought I had to use the restroom a lot was the extent of this disease.  I’m 27 years old living in Maui, HI.

My current Symptoms:

Inflammation, abdominal pain, uncomfortable, blood, urgency, fatigue
My UC Story:
Ok, so I got diagnosed in July 2011 and for the first 6 months made small efforts to look up the disease and tried to eat a little better, but didn’t see the extremity how this disease can take over you. I was working alot, always on the go and just always thought seeing blood and diarrhea was going to be my reality of this disease, which I had come to grips with and accepted. Last month, March, my flare up got more extreme and I realized the extent of how this disease is something you can’t take lightly in which I was doing before. The biggest symptom for me was abdominal cramps and fatigue in which I could not go to work or function at all which is something I don’t like to do. I workout almost everyday, (crossfit) and it really made me realize how tired and fatigued I was. This is when I realized that I needed to seriously start researching, getting recipes, talking to people, and making this a focus. During this time, I was able to get a colonoscopy to ensure it was only ulcerative colitis and I will be starting additional meds tomorrow, a month later….
I’m writing cuz of my frustrations I have with this, on how up and down it is…I will start to have physical pain, which I don’t take lightly cuz I feel like I’m a pretty strong woman, then I will eat well and rest, take care of myself and then test something new when things get better and I’m back at square one again. Then if I just stick with the foods I know, I get bored and annoyed with them, then have this starvation for more food. I have been talking to my family about this and it seems like they just don’t understand. It’s such a trial and error process that it can be hard to keep staying positive all the time.
Then today, I feel like I ate pretty good food, I think anyway, cherrios (I have read certain places that cherrios are ok during flare ups and they seem to help with my pain aspect plus I enojoy them too), gluten free pasta with shrimp (light on spice), scrambled eggs and while I was heading to my class I ended up having an episode that really just broke me down. Made me have to pull over twice, miss my class, clean up, and just feeling embarrassed by how I lost all control.
I think my acceptance to having a chronic disease is what I’m trying to deal with. I feel like I do have a good support here in my home but it still is hard to really open up to them I guess. Dealing with the fact that I’m constantly going to the restroom, constantly hungry, constantly going through ups and downs of being fatigued, emotionally embarrassed by the constant conditions, constantly dealing with doctors, prescriptions, medicine bottles and feeling alone.
I have always said that this was bittersweet for me to get this because before I got diagnosed I was in the process of trying to get healthy, trying to get sober, trying to eat better, having healthy habits of excercise and just being healthy. I quit smoking after 9 years and a couple months later got diagnosed.  This bittersweet feeling makes me try to stay positive but I have my bad days, I guess. Today is that day.
I’m writing today because of my not one but two accidents back to back that really just crushed my positive spirits and don’t feel I can really talk to anyone because:
  1. I’m embarrassed
  2. feel like friends and family, lover is annoyed with me of constantly mentioning it or venting about it
  3. feel like no one really understands how it can bring you down and make you second guess you’re overall thinking
  4. Feel like people don’t really think it’s that big of a deal
I’ve been reading plenty books that some are contradicting each other but just trying to just eat anything that I know will not give me abdominal pain. That is my biggest wish this could stop. I’m hoping this next month of enamas and suppositories will bring it down but just trying to just accept and deal with it and remembering that it is CHRONIC is what I’m working on. If anyone has any feedback I’d really appreciate it. Thank you for reading.
Where I’d Like to be in 1 Year:
I would like to have a strong recipe food health ROUTINE, of being healthy, more knowledge of what this disease is, and a structure of my vitamins, supplements, medicine so I can go back to working on my other life’s goals and aspirations.
Colitis Medications:
Colazal I have been on for 6 months and see it work but feel like it’s worthless during a flare up. Enemas too are hit or miss as well during a flare up. I have trouble holding it throughout the night.
written by Kelly
submitted in the Colitis Venting Area



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fatigue

5 Responses to Acceptance, Embarrassed, and Feeling Frustrated

  1. Adam
    Adam April 15, 2012 at 11:12 am #

    Hi Kelly,

    Thank you for sharing your story with all of us. As hard as it might be to imagine, there’s hundreds of thousands of us all over the planet who can relate to much if not all of what you’re going through. And for sure it is embarrassing, but I hope you feel better knowing that so many others have been in the exact same spot, and it does get better.

    Make sure to talk with your doctors when you are feeling fatigued. Anemia is very common with UC’ers who have active UC symptoms, and your doctor should know how to help you with that.

    Also, UC can be tricky in a strange way. It’s probably very tough for you to read so much information like you’ve been doing and then to see how what works out for someone doesn’t always work for another. It’s unfortunate, but that is most definitely the case with our disease. I have a close friend who has had excellent success with a certain medication for his UC, I on the other hand did not have any success with the same med.

    And in terms of food and eating, the same is also true. What has worked for some other people in terms of being able to tolerate certain foods, doesn’t always work for me etc…

    I’ve found that no matter what my UC symptoms are doing, by figuring out how to reduce stressful situations, it has helped me emensely with controlling my disease. For example, I remind myself that nothing is worth a RUSH. With work, family, and friends, I try not to be rushed around, as that usually made me stressed out and activated my immune response system, which I don’t think is a good thing.

    Here’s a story I wrote a while back (after a trip to the beach) that goes into more detail about stress which you might want to read up on: https://www.ihaveuc.com/stress-and-ulcerative-colitis/

    You’re gonna get past this, remission is definitely possible, and keep your head up. The tough times don’t last forever Kelly:)

  2. stephanie April 15, 2012 at 11:55 am #

    You hit this right on the head, I know exactly how you feel. It is a lonely chronic illness :(
    I’m embarrassed
    feel like friends and family are annoyed with me of constantly mentioning it or venting about it
    feel like no one really understands how it can bring you down and make you second guess you’re overall thinking
    Feel like people don’t really think it’s that big of a deal

  3. Trish April 16, 2012 at 1:16 am #

    Hi Kelly. I’m sorry to hear you’re feeling rubbish at the moment. Yes, this is a chronic disease, and currently incurable other than with a colostomy. Finding that out can be overwhelming. It helps, I think, to remind yourself that people like diabetics also suffer in similar ways and that if you were faced with their illness, you would be compassionate and understanding – you have a right to expect that from others, but you also have to be realistic about their empathy when they have never felt this themselves.
    When you’ve made the effort to stop smoking, etc, it can feel very ungrateful of your body to then hit you with this disease: it takes practice not to regard your body as the enemy and to learn to work with it, not against it.
    As for being embarrassed, this is somewhere we’ve all been. Yesterday, for instance, I had to spend the day at friends where last time I was there I had spent all evening in their bathroom. And I am currently in a small flare, so I was very nervous about going. Fortunately, I wasn’t ill, and we ended up having a lovely time – the truth is, people are concerned, not judgemental when you’re ill, and if they ARE judgemental, chuck them!
    I hope the medication – some medication – begins to work for you, but diet will help you enormously. Personally I follow the SCD and that’s worked well for me. You mention cherrios – what on earth are these? But if you meant Cheerios then that stuff might well go through you like drain cleaner! Fibre – especially cereal fibre – is NOT what an ulcerated gut needs – fibre is for healthy guts. Remember your UC is like eczema in your gut – if you had eczema on your skin, you would only put the most gentle, soothing things on it, not things that scratch and rub.
    For diet, if you feel unable to follow the SCD (though I would advise that you do), stick to plain grilled or steamed fish, light meats, and vegetables with a high water content such as courgettes and sweet peppers (no skin) or gentle fibre such as carrots. Cook your veg until you can mash it with a fork. Avoid all processed food (eg: anything with a brand name) and anything raw (for the time being). You might find you can manage some cooked fruit, such as apple compote.
    NO SUGAR. Sugar is inflammatory – avoid it like the plague (and this bit is hell, because you will crave it for about three weeks). Personally, I would avoid all cereals too, though some people find they can tolerate white rice. Avoid hot spices such as mustard and pepper – instead, use herbs (I keep tarragon, fines herbes, herbes de Provence, rosemary, sage, thyme, oregano, savory, fennel, dill, chervil always in the kitchen) and mild spices such as cinnamon and ginger.
    Also, would you say you have a bit of an addictive personality? You mention smoking, and getting sober, and that you now do crossfit almost every day. Are you now addicted to exercise rather than substances? Are you a goal-driven person? That is not good for UC. It might be useful for you right now to become addicted to yoga, which is very helpful for UC, and to meditation, which helps enormously with the anxiety that UC can cause – you now need gentle, supportive, stretching exercise, not something hard and tough. I also recommend swimming, especially if there’s a jacuzzi at your pool to ease your muscles afterwards, and gentle walking outdoors, if you have access – start with half a mile and work up (the idea is to calm you down and get you breathing right, not thrash your body or have a goal of any kind).
    I also just realised something – you’re in Hawaii. Did you know that the sulphur emissions from the volcanos can active your UC? I am on an SCD forum where one member can be affected very badly when the volcanos are more active – this is something you might consider as a factor.
    Finally, good luck, and I hope you feel better soon. Trish :)

  4. Shona
    Shona April 16, 2012 at 6:10 am #

    Hi Kelly
    You’ve come to the right place. I look up this site every time I feel sad and lonely. Reading other people’s stories reminds me I’m not alone.
    Most of UC’ers feel what you feel. I have days which my husband n kids I call it my “Tantrum days” – because I want to eat all those spicy, yummy foods that I am not allowed. I was diagnosed for Celiac Disease 7 yrs ago and only got diagnosed for UC in March this year but have had symptoms for over 2 years. Diet does play a huge part for me. My 2 cousins who also have UC can eat most things except very spicy (chillies) food. Both respond well to medication and one of them is even volunteering for clinical trials. After reading Adams story I got the courage to go off medication. Yes!! I went off my medication (Sulfasalazine, Prednisalone n Salfolk enemas) two weeks ago relying only on SCD diet but also making sure its gluten free and nightshade family free. I also take multi vitamins and probiotics. I’m having normal one or two BMs per day – yes normal. One tiny mistake last Wednesday (ate something I wasn’t supposed to) and I can feel a slight burning. I’m hoping it won’t get worse as I’ve only started going back to work 2 weeks ago after 5 weeks off work. This was only possible after stopping meds (meds made me nauseas, drowsy) Like you I used to workout at the gym 5 days a week, now I find it difficult to walk for 5 minutes. As Adam said you could be Iron anaemic, as I definately am and taking iron supplements which has helped. My Doctor got me tested for Iron, B12, Folic Acid, Vit D and Calcium – I am very low in all of these. Please do get your iron levels checked. You’ve come to the right place, this is our UC family or as I call it “Adams Family” as in the tv show :))

  5. Bev April 16, 2012 at 5:03 pm #

    We all feel you Kelly. Definitely.

    It kind of bothers me when people say that this disease isn’t as bad as some other diseases. Each one of us who has ANY chronic illness is in our own reality…so YES, it can be ‘as bad’ as any other disease. Each one of us is living it. And, yes, we have to live with it, like other people who also have a chronic disease.

    I find that I go through ‘up’ times, and ‘down’ times, mentally. I think that’s normal. Who wouldn’t, when, if we really think about what we have, and that it won’t go away, bothers us? Why wouldn’t it bother us, right? I think any chronic illness is a burden. It just is. But, I guess we have to paticipate in life, as best we can, right? There are, and will continue to be, plenty of good times. Of that, I am certain!

    Visit this site often. It really does help.

    Kudos to Adam for starting it!

    Cheers,
    Bev:)

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