Ulcerative Colitis Tips


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The Struggle and Beauty of UC

Nearly two and a half years ago I met a woman that I have fallen in love with.

I knew from the beginning she was someone I could marry! We were very compatible with our personality, and values. I fell in love with her soul and inner beauty. She had so many beautiful qualities. However, the irony to this feeling was an accompanying feeling that in someway we weren’t the best fit. I don’t know why I felt this. I didn’t have much reason to.

It wasn’t until months later that I learned the woman of my dreams had been struggling with UC for over 8 years. Even when she told me for the first time I shrugged it off. I didn’t really know how much it really impacted her life.

A few months more and I began to realize she was using the bathroom a lot! It was then that I began to realize for the first time the lifestyle impact. I began to research as much as I could and quickly discovered that having Ulcerative Colitis impacts your life a lot.

I am an avid adventure enthusiast and self diagnosed perfectionist. This seems to not fit well with UC lifestyle at all!

Over the last two years we broke up more than once struggling with our differences, but the irony was I could never get over her. I couldn’t stop thinking about her when we weren’t together.

At the start of 2017 we were not together! I was living in India and she was back home in the US. It didn’t take long for me to want to Skype her every week and then everyday. When I returned in April we got right back together. I learned that although the effects of UC are not desirable her struggle with it has produced many beautiful personality qualities that I love!

We are now making plans to get married! Although I have learned a lot about UC, I fear there is a lot I don’t know about living with and being married to a partner who has UC. My hope is that some of you can help us both understand what to expect!

Questions for those who have UC or have a partner with Ulcerative Colitis:

1. What help do you expect from your partner?

2. What is the reality of getting into remission and how sustainable is it?

3. My partner has mainly used diet to control the symptoms but hasnt been successful in reaching remission. What are your thoughts on treatment?

4. I love outdoor adventures and traveling. I sometimes feel like I have to choose between her and my passion for exploring. What are some ways to work through this struggle or are we crazy for trying?

5. What else do you think I should know?

Thanks for all your help!

Some more about Jared:

I play the Uke! I have been to 30 countries! I snowboard!

written by Jared

submitted in the colitis venting area




13 Responses to The Struggle and Beauty of UC

  1. Laura August 19, 2017 at 12:08 am #

    Hi Jared,

    Congratulations on finding the love of your life!

    Being married to someone with UC must be hard, I often feel guilty that my husband has to be.

    He has been my rock. When I waa diagnosed, he came with me to my appointments and was there for me after many tests and when I was admitted to hospital for a week he finished work early and spent as long as he could by my side just so we could be together. He asked his parents to come and stay and between them they made the house lovely for when I came home.

    He buys food he knows that I like it need.

    He tells me I’m beautiful even when I’m two stone underweight or bloated from steroids.

    He acknowledges that I have UC but he doesn’t let it be the focus and is great at taking my mind off things.

    He’s done charity events to raise money and helped me do crafting so that I can raise money too.

    He’s pulled over to more service stations than I’d care to admit on long journeys.

    With regards to your hobbies I think it’s so important that you guys find a way to make that work because all couples need to have their own hobbies. Perhaps you can plan your trips between you and if she doesn’t want to go just ask if she’d like someone to come and stay? Does she support your adventures? Or has it caused friction?

    I was diagnosed in 2014 and we had a baby in 2016. Married since 2012.

    • Jared Nygren September 4, 2017 at 1:11 pm #

      Laura! Thanks so much for your comments. I really enjoyed hearing how your husband works through it. It gave me some new ideas and inspiration.

      Thanks again

  2. Brian Stevens August 19, 2017 at 12:41 pm #

    I have had uc for over 10yrs have taken alot of meds, herbs,and special diets with some great success. I wanted to share what got me in remission. I live by the bible,and asked God to heal me.Flax seed tea before every meal.3 slippery elm caps before every meal the hot tea will help dissolve them. I take primal defense probiotic 3 times a day 30 mins before meal, if Im having trouble I take an extra capsule 4 to 5hrs after the last one while asleep, with primal defense u start out taking one a day and increase to 3 it stopped by bleeding the same week I started. I juice every day cabbage, Carrot’s, and celantro and drink with my meals,and drink just juice at night before bed.God bless u on your journey.

    • Jared Nygren September 4, 2017 at 1:13 pm #

      Brian I really, really appreciate what you shared. I will share this with her and see if some of this works for her. Thanks for taking some time to post this.

    • Jared Nygren September 4, 2017 at 1:24 pm #

      Also what health insurance would you recommend?

  3. Cat August 19, 2017 at 4:38 pm #

    Hi Jared,

    You seem like a fun, adventurous person and I’m happy that you are happy in this relationship. However, I think you both need to sit down and discuss your expectations together (if you haven’t already). You state that you both have broken up in the past and that your personality as a “self-diagnosed perfectionist” does “not seem to fit well with UC lifestyle”. Believe me, there is no room for perfection or predictability with UC, and that is a tough pill to swallow, for patients as well as those who care for us.

    In response to your questions:

    1. What help do you expect from your partner? So I’m currently in remission, but when ill I become disabled. I would need financial support for medical bills, physical support for just doing everyday tasks, and mental and emotional support to help me deal with the isolation and frustration of this disease. (I’ve gone through my worst flares single, so the financial/physical support has fallen to family and the mental/emotional I just struggled thru alone.)

    You’ll have to be prepared “for better or worse”. And this is something true of all relationships, but especially of UC. Your fiance may go into remission and feel amazing and almost normal, or her illness may one day progress to being unmanageable and she might need bed rest, hospitalization or even surgery. Will you be able to be her support then?

    2. What is the reality of getting into remission and how sustainable is it? It’s tough! Since you’re in America – you know how messed up our healthcare system is. I first had to be able to get on a healthcare plan where I could get appropriate treatment. I reached remission through a combination of Prednisone, Imuran, and Remicade, a biologic infusion. It depends on the severity of the disease. Mine is pretty extensive and went untreated for some time. I hope and pray that it is sustainable, but only time will tell me!

    3. What are your thoughts on treatment? I would recommend a combination of diet and medication. I realized I am gluten intolerant during my first, mild, flare, and avoiding that very carefully that helped me get into that first remission. I developed lactose intolerance after another flare and am careful with that now too. I try to enjoy alcohol only in moderation. Diet can be tough though – it can limit where and what you eat, which can be so central to relationships.

    If she can’t get into remission on diet alone, she should definitely talk with a GI about medication options. Steroids are a “bandage” for immediate relief – these are so hard to be on, physically and emotionally, so please, make sure to be patient if these are prescribed. If she has a mild or moderate case, she should go into remission using the mesalamine medications that will most likely be prescribed. I wish her the best for remission – it’s amazing to feel almost normal again after being ill.

    4. What are some ways to work through this struggle or are we crazy for trying? Look, I will be honest. You have to be able to make that choice to be with her, and not to make her feel like a burden. Believe me, I’ve been there, and it’s not fair to do to someone with a chronic illness. I’ve given up a lot of my young life to this illness and I would have given anything to be out partying (or even just working!) like other people my age.

    Again, this is where an open conversation comes in. You should definitely make sure to have your outdoor adventures, but maybe compromise. Maybe you will go on one hike a month, if she is not well, but when she is well you will be outdoors all the time. Maybe she can’t do long flights so you will stay closer to home when you both take trips.

    She needs to be comfortable knowing that you care for her and her illness, knowing that she can be honest with her needs and how she is feeling, and you need to be comfortable with compromise and flexibility, and being able to take care of yourself, even if you have to take care of another. I know I may have been a bit brutally honest here, but this is a brutally difficult disease to have. I wish you both the best!

    • Jared Nygren September 4, 2017 at 1:19 pm #

      Cat thank you for your genuine response. I can’t tell you enough how helpful it is to hear this from someone who knows. I really appreciate it. You gave me a lot of perspective and insight.

      I was also wondering. Do you know if there is any health insurance that covers the more natural remedies for UC?

  4. Jennifer August 21, 2017 at 4:06 pm #

    I met my boyfriend right when my symptoms became so bad that a diagnosis wasn’t long behind. My dx came about a month into our current 8 month relationship. I had given him free reign to run the other way without passing judgment on him and he refused. In May, I was hospitalized with severe extensive UC. Aside from him jumping to my rescue to take my dog and handle my house responsibilities for about a week, he also came to visit me and still refused to run away. We’re not preparing my house for rental and I am moving in with him. It certainly takes a strong person to deal with UC – both watching a loved one and being the person with it. Most importantly, it takes a selfless person to care for another in the way that will be required when IBD/UC is being a jerk. He must be so overwhelmed with all of the information I shoot his direction and I know that my diet confuses him (I am on the specific carbohydrate diet and now combining that with LEAP/MRT program). To lessen his and my burdens, I started blogging to keep myself sane and help others. Here’s the best answers I have for your questions:

    1. What help do you expect from your partner?

    2. What is the reality of getting into remission and how sustainable is it?

    3. My partner has mainly used diet to control the symptoms but hasnt been successful in reaching remission. What are your thoughts on treatment?

    4. I love outdoor adventures and traveling. I sometimes feel like I have to choose between her and my passion for exploring. What are some ways to work through this struggle or are we crazy for trying?

    5. What else do you think I should know?

    • Jennifer August 21, 2017 at 4:17 pm #

      Perhaps I should have actually answered the questions! :)

      1. What help do you expect from your partner?
      All I need from him is some understanding and compassion. I don’t make my disease his burden, but he is the type of person who always wants to help and so he jumps at the chance to do things for me if and when I am not well.

      2. What is the reality of getting into remission and how sustainable is it?
      This differs from person to person. I was told that no matter what I do or do not do, if the disease wants to progress, it will. All you can do is TRY. You must try to alter your diet, exhaust any and all avenues of possibility, and finally, avoid beating yourself up if it doesn’t work. Mental and emotional health can take a toll when you feel beaten down and exhausted by something you cannot control. (They think I am close to remission now, but I will always be looking at my UC with a side-eye letting it know I know it wants to take me out at the knees).

      3. My partner has mainly used diet to control the symptoms but hasnt been successful in reaching remission. What are your thoughts on treatment?
      Treatment will have varying degrees of intensity and success from person to person. You are welcome to explore some of the research articles and information at my blog. Specifically, I really suggest (if your partner is of the holistic mind) looking into food sensitivity testing and seeing a functional/integrative doctor. I see an IBD specialist at a research hospital, a functional dietitian,and a chiropractor for my UC specifically. I practice yoga and swim if I am not feeling 100% and when I am 100% I lift weights and ride a road bike. I take mesalamine (the lesser of the evil drugs) and I take supplements. Vitamin D levels are super important for us IBDers. Your partner should be getting tested and needs to be at 40 or above for this. B12 also plays a role. For some, iron is an issue.

      4. I love outdoor adventures and traveling. I sometimes feel like I have to choose between her and my passion for exploring. What are some ways to work through this struggle or are we crazy for trying?
      If she is flaring or concerned about that, there are adult diapers that look just like panties. Accidents are a real thing with this horrible disease. There are also phone apps for toilet locations. I do suggest taking it easy when not feeling well as stress is also in a physical form and many of us have severe fatigue and joint pain issues. Don’t push your partner if they don’t feel well. We hate missing out on things. It’s sometimes like being trapped in your own body. The best thing your partner can do is try to find remission (I realize this is a hard task).

      5. What else do you think I should know?
      I was a heavy lifting, meal prepping, athletic, adventurous, fun-loving, and otherwise healthy human before UC came into my life. It’s not only humbling, it can be defeating at times. We hate not being able to socialize or being flakes because of this crap and the best thing you can do is never make your partner feel any worse about these things. I assure you, we beat ourselves up enough. Try to enjoy the good days to the max so that the bad days aren’t as big of a beast to deal with.

      Good luck to you.

      • Jared Nygren September 4, 2017 at 1:23 pm #

        Jennifer, thanks for taking time to share your genuine thoughts and to answer all my questions. I sometimes feel so isolated trying to get answers because no one seems to really know exactly what our situation is like so I really appreciate you taking time to answer my questions and tell me your story.

        Also, I would love to know what health insurance you would recommend?

        • Jennifer September 18, 2017 at 6:15 am #

          I would look into a health care insurance that will have the lowest prescription co-pays, the lowest specialty doctor co-pays (GI is considered specialty), one that maybe covers some dietitian/nutritionist visits, and one that the doctors you want to see are going to accept.

          The most important thing here is being able to see the doctors that you like and respect. Finding a GI who is well educated and specializes in IBD is key to success.

  5. Jenny August 29, 2017 at 2:32 am #

    Hi!

    Very cute story and I definitely don’t think you should give up on your big love!

    Comment on 3) I don’t have UC but my daughter has and if you are like me and want to do the best for your loved one you could start by learning to heal UC. Being a perfectionist could be good to help her follow a healing diet like GAPS, AIP or SCD. This is what we are doing with good results. But you nedd to be strict and have patience.

    Help her find a good Functional medicine specialist that not only tries to control/suppress the symptoms/immune system but looks for a more holistic view and can help add supplements that she needs.

    Good luck!

    • Jared Nygren September 4, 2017 at 1:09 pm #

      Thank you so so much for your in depth response on comments. I really took to heart what you said and it gave me a lot of hope. We are going to keep moving forward and hope for the best. You gave me lots of great ideas and new thoughts. I can’t thank you enough for taking the time.

      Thanks again.

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