Ulcerative Colitis Tips


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Staying CLOSED OFF From Getting HELP

Dear UC’ers, Family, and Friends,

I received a very short email at 9 pm on Sunday night. Please give it a read, and then I have a few questions.

Here is the email:

I don’t personally have UC. My boyfriend has it. They discovered it about a year ago. I think the hardest struggle has been with his mental health. Ihaveuc has helped me to cope with his illness. Sadly, he wants to stay closed off from getting help. Thank you for all that you do. You’re certainly helping.

-Andrea



My questions:

  • I’m interested to know how many people who have ulcerative colitis feel the same as Andrea’s boyfriend?  (I have a feeling it might be a surprising figure.)
  • Additionally (and this particular question would be for those who have a friend or family member, boyfriend, girlfriend etc…) I’m interested in what people like Andrea might think is the reason(s) behind someone with UC not wanting to get help or why someone would rather “stay closed off from getting help” as Andrea puts it?  Any thinking behind why that might be?

Thank you Andrea for giving me permission to share your email.

I wish you and your boyfriend a happy 2016, and thank you for being a part of the site.

Best regards,

Adam




27 Responses to Staying CLOSED OFF From Getting HELP

  1. Leah N
    Leah Nikolaus February 3, 2016 at 4:57 pm #

    It’s funny because I just saw my GI and it had been a few months. His first comment was that he thought all this time I was doing much better because I hadn’t been making my monthly visits. The reality is that at the time, I had “lost the will to get better” is what I told him. After being diagnosed 1 year ago as well, nothing I had tried was working and it just got to a point where I was frustrated and overwhelmed. No matter what I did, I was still going 10-15 times a day with the occasional accident and it just kind of became my norm. I admit, I closed off and was tired of getting my hopes up on different people’s solutions snd then it wouldn’t work for me. My GI just felt so awful because he just wants to get me healthy again and I’ve a renewed hope that it will happen, just might take some time and more trial and error.

    • Adam
      Adam February 4, 2016 at 4:41 pm #

      Hi Leah,

      Thank you for sharing your comment with us, and yes indeed, that for sure is a very hard time what you’ve described about your past year.

      I think for many of us the first year is one of if not theeeee hardest. Was for me at least, and like many others, not only the mental but the constant struggle of being in the “never ending flare” made me really wonder…

      But, things have turned around for many upon many of UC’ers after year one (including for me), and I suspect the same will ring true for you as well.

      Keep your head up, and big pat on the back for your GI looking out for your::)))

      -Adam

  2. Martin Ems February 3, 2016 at 5:01 pm #

    I was diagnosed with UC 6 years ago. Have it controlled w/ Remicade. I have found it is best to be matter of fact when talking to others about this disgusting disease. Simply stated, by acknowledging you have the disease to others, you are coming to terms with it yourself thus and reducing stress. I firmly believe stress is a huge component of the disease.

    Its true that it is life changing. But it is not life ending.

    • Adam
      Adam February 4, 2016 at 4:42 pm #

      Amen brotha Martin!

      True Dat Amigo!

  3. Ellie February 3, 2016 at 5:14 pm #

    Being newly diagnosed, Andrea’s boyfriend may be :

    Embarrassed by the symptoms, because who wants to focus on their Bowel movements?

    Be depressed by his lack of control, feelings of hopelessness ,or even possible side effects from prednisone or other medications he might be taking

    Not being educated with how others deal with the disease or unaware of how lifestyle can influence UC so doesn’t even want to deal with it as he doesn’t know anyone with the disease.

  4. Mitch February 3, 2016 at 5:19 pm #

    There are times I feel just like Andrea’s boyfriend and I spent many years allowing that feeling to prevail. Now I do everything I can to fight the feeling. The one question I hate getting from people who love me is, “what can I do to help?” Because I want to tell them the only thing they can do is find a cure.

    The best thing I think our loved ones can do is stick with us even when we seem totally withdrawn and for us, we have to come around to accepting what help we can get.

    My life has become so much more manageable since I started opening up and allowing people in.

    Good luck to both of them on their journey and to everyone here.

  5. Anna February 3, 2016 at 5:21 pm #

    I get to where I give up too. After six different kinds of meds, constant testing, and appointments I get exhausted and just accept that my norm is a flare. I have been in flare for over a year though and initially I was very involved. It’s difficult when your life revolves around a bathroom and nothing seems to work. Hopefully he can pull himself out of this “funk” and begin to manage his symptoms.

  6. Wendy February 3, 2016 at 5:39 pm #

    I totally agree 100% with Martin! Talking about this disease does help deal with it and cope with stress. Educate the people in your life, you’ll be amazed by the response you will receive! We’re not alone, thousands of people suffer with this disease. Unfortunately not all medications work, and most of the time it’s a trial and error to find the right one. Stay positive everyone, life is still worth living.

  7. Manas Shukla
    Manas Shukla February 3, 2016 at 5:44 pm #

    I think being “closed off”,as the other writers suggest above, is a stage when all the options of getting better stop working. Then one almost gives up. I have also gone through this in my suffering. If it lasts a while then its OK otherwise there is something serious. It needs to be probed gently with the people close to the patient or professional help should be sought. I am sure trying with the first option is always better because as a patient of this disease one is already fed up with the latter & their methods. As it is, the medicines to treat this disease are the real reason for this mess up in the first place.

  8. Julie February 3, 2016 at 5:45 pm #

    For many of us who have been diagnosed with UC, daily routines and feeling “normal” are disrupted by rectal pain, urgent and frequent watery/bloody diarrhea, cramping, fevers, night sweats, depression, isolation and despair. During a severe flare, I cry a lot. I am thankful for my husband who is at my side through the pain and suffering. Being loved and supported makes a tremendous difference. Finding excellent medical care is essential. A doctor who specializes in IBD and is compassionate is often times, a ticket to remission. And, remission is a blissful state of existence.

  9. Ravi S Pandey February 3, 2016 at 5:53 pm #

    Counselling may help if he agrees to meet a counsellor.Mindful meditation also may help.If depression is the underlying cause for his encapsulation, cognitive therapy may help him

  10. Nate February 3, 2016 at 6:35 pm #

    I have had this disease for 12 years now. And I’ve battled with depression ups and downs. I’ve close myself off and I have spent time at mind-body retreat centers and spiritual wellness centers. I am now I am now going through a second divorce possibly and and feeling just like Andrea’s boyfriend again going into my 13th year.

  11. Michelle February 3, 2016 at 6:39 pm #

    It took me 6 months into a pretty severe flare to finally go to a doc the first time and get help. It was just an embarrassing thing to talk about. Now I’m very open and will take all the help I can get. The only thing I DON’T like is when people who don’t have IBD try and give me tips about how to make my tummy feel better. So I’m all for the advice of people wh have been going through this longer than me… But not from people who have no idea what I’m going through!

    • Milton R. Siebelts February 10, 2016 at 3:26 pm #

      I totally agree with you. People with no idea what ulcerative colitis is and what happens in a flare always have lots of helpful tips that don’t work.

  12. Sharon February 3, 2016 at 7:21 pm #

    I was diagnosed about 3 years ago. Never had a problem until the colonoscopy! I was having bleeding with every bowel movement. Then it got to the point of only passing blood and nothing else. When I had a flare I just didn’t eat when I went to work. Thank goodness I was only at work for a couple hours. But just before my hip surgery in December of 2015 I was having a flare, going on almost 4 months of passing nothing but blood. Then all of a sudden my left ankle swelled up huge! Then it was my whole foot and up my leg a little. Didn’t even look like a foot! Every joint in my body hurt and I felt sick. Went to the Dr. They felt I had an autoimmune disease. Went for every blood test there was. All was negative. Then back to the Dr. And two more blood tests they hadn’t run. Again negative. I was put on prednisone and it took four days for the swelling to go down but I noticed the bleeding finally got much better then I had normal bowel movements. I had surgery two weeks later followed by more prednisone. I’ve been fine since! But I changed my diet completely! NO sugar what so ever! I usually have a couple slices of sweet potato with a couple of organic eggs for breakfast and that’s it. Then lunch could be homemade soup or salad. Then dinner is anything from chicken, pork chops or steak (yep steak) and more sweet potato. That’s my diet. I’m still doing great, no more swelling no more joint pain and no bleeding!!! I’m sticking to this diet! Even while I’m doing good I stay away from sugar and junk food. I don’t drink coffee but I dearly love mocha frappe’s. But none of those either. So far it’s been almost 3 months with no symptoms. The longest I’ve gone without flares. I don’t want to go to the Dr. Because I’m so afraid they put me on remicade or some other horrible medication. I will only go if the bleeding is so out of control that I have to go. I prefer to try it with diet and eating healthy. I was scheduled for another colonoscopy but I still wasn’t able to lay on my sore hip after surgery. I’m almost afraid to even have that done because I’m afraid it’ll cause another flare. But I know it has to be done. But so far so good. For me…..staying away from sugar seems to help a lot! Sugar is such a huge inflammatory! HUGE! My joints ached a lot after eating just a little sugar. I don’t eat processed foods either and stay away from fast foods. Cook your own food! I eat bean soup with a little bit of carrots and celery. Organic broths and I fill my soups with chicken usually. Finding a diet that works for you helps, I’m sure of it. For me anyway. I know sugar is the worst for me even though I’m doing good I will not add it to my diet! I will have a little bit of organic raw honey and a banana with natural organic peanut butter for my sweet tooth. No problem. I do understand why the man closes himself off from getting help. Hopefully he’ll read everything he can to get some sort of help with diet or different things he can try to help him. I wish him luck.

  13. Alicia February 3, 2016 at 8:37 pm #

    I agree with all of the above having been diagnosed 4 years ago and haven’t yet found anything to put me into remission I am also “over it” and the mental challenge of accepting the uc and grieving for the old me and old life the hardest to cope with

  14. Tyler February 3, 2016 at 8:46 pm #

    I was diagnosed only about half a year ago (at twenty years old with moderately severe UC) but have been feeling the symptoms for a couple years i was just too scared to admit that there was something seriously wrong with me. It may just be that im still early on and medication hasnt really been working out all too well for me but it has put a tremendous emotional toll on me lately, im not really old enough with well enough pay to afford all of these constantly building up hospital bills and doctors visits but i have been reading in on other peoples experiances all day and i feel like this site has already helped me beyond anything i ever expected.

  15. Shelley February 3, 2016 at 9:02 pm #

    I was diagnosed with severe UC a year and a half ago. My GI was surprised I had gone that long not having any symptoms or knowing I had it until then. When we did find out I had it, my case was very bad. I was going 20+ times a day and most of which were uncontrollable accidents. During that time I was very closed off. I didn’t want to go out or be in public at all because I was embarrassed or afraid of having an accident. Also, I didn’t want to have to worry about knowing where the bathroom was all of the time. I still make sure to this day I know where a bathroom is anywhere I go but my UC is getting under control. I started Humira in July 2015 and at first it wasn’t working but now it is and it’s helping my UC get under control. Even though I still look for and know where a bathroom is wherever I go I’m no longer afraid of going out and song fun things. I understand where Andrea’s boyfriend is coming from and I hope he gets the help he needs so he no longer feels like he needs to shut himself off from the rest of the world. Whether the help be with medication to control his UC or going to counseling, I hope he gets it so he can and is able to live life to the fullest.

  16. Joe February 3, 2016 at 10:04 pm #

    Hi Guys! I’m new to the site as of this week and am finding comfort and peace of mind reading everyone’s input and support. Much appreciated! I’m a male in my 60’s. Actually lost 55 lbs the hard way with 20-25 “runs” per day. Weight loss mostly in the first year and a half. Pretty stable now at 160. With 10-15 runs per day now. I was diagnosed three years ago. I’ve been on Remicade and Entyvio…seemed to help on a short term basis, but the last two years have not been all that much better. Tomorrow I go in to MGH in Boston for my intro to Humira.
    I’m hoping for the best. Also had a very bad reaction to
    Mercaptopurine last week. It worked great for 3 weeks but during week 4 I broke out in bad rashes and teeth chattering…body shivering episodes. I was also taking prednisone (10mg). Very scary…it took 7 days to get it out of my system. Praying the Humira will help…..running out of options. I think as positive as possible and share the knowledge of my disease with friends and family and it helps relieve most of the stress that could come from those directions….def. best to share knowledge to the best extent possible. Just retired in Sept. and loving a more stress free life style…my wife has put up with a lot and she is my Angel. People around me have been great.
    Glad to hear that Shelly is doing well with Humira.
    So happy to know I’m not alone. Thanks for all of your input! And thank you Adam!

  17. Alison February 3, 2016 at 11:00 pm #

    I was diagnosed almost a year ago and I can absolutely relate with what Andrea’s boyfriend is feeling in being closed off to getting help. I spent much of the last 11 months living in denial JUST as I spent the 6 months BEFORE being diagnosed denying I was sick. I couldn’t bring myself to go to the doctor. My family begged me to go as they feared the worst and still I couldn’t. I suffered my first full blown panic attack in the waiting room of the Doctor’s office and my second at the surgery center 3 days later while waiting to be taken in for my colonoscopy. Although my symptoms improved a bit with medications for a while–I haven’t yet achieved remission. In fact, after each of 3 step-down rounds of Prednisone, my symptoms quickly return. I’m almost as sick now as I was when I finally admitted something was wrong in the first place. Although there is no way I can still deny that I have UC, I continue to remain “closed off to getting help.” The thought of the exam itself sends me in to a full panic. Literally. Irrational as it may be, it is MY downfall to getting better.

  18. Sue February 4, 2016 at 12:24 am #

    I guess it depends on what you mean by getting help. I’m a nurse and it’s clear western medicine has nothing to offer me here except prednisone (I’ve got a prescription to go to the Caribbean in a few weeks but no way would I subject my body to that poison on a regular basis). Everybody keeps asking me when I’m going back to the doctor, and they get upset when I say I’m not. I ended up in the ER Christmas week 2015. But I am “getting help”. I’ve been scouring the Internet for anecdotal stories about people actually healing – so far I’ve discovered the SCD, the Briggs Protocol, information about aloe+tapioca flour drinks, bee propolis, L-glutamine, the Probiotic VSL#3, etc, etc. A neighbor suggested marshmallow root tea (flavored with Stash Licorice Spice Tea) which I sip non-stop. Those of us in Western society have been taught that a quick trip to the doctor for a Rx for pills will cure anything, and taking personal responsibility for our own health is more trouble than it’s worth. I’m watching a friend with diabetes 2 slowly kill herself with pastry and she just keeps going back to the doctor for more meds as she gets sicker and sicker. I know it’s crushing to be told you’ve got something as painful and unpleasant as UC, but once you have had your pity party, put on your big-boy pants and take responsibility for your life. I say that with love in my heart. The Internet is a treasure trove of valuable information and this website is a wonderful resource – I’ve learned so much, including that there are many things I can do to still have a life. I had my pity party and you’ve had yours. Let’s get on with our lives.

  19. Bonny February 4, 2016 at 1:59 am #

    For your poll, I answered none of the above. This is because when I was first diagnosed, I felt exactly like Andrea’s boyfriend. I talked to the nurse and consultant about it, but did not open up to friends and family. It took me over a year and a half, if not 2 years, to realise that you do need to be open so that you can cope with the mental side of it, let alone the physical side. This is an incredibly hard disease to talk about because often people can’t see you are suffering, and it’s not the done thing to talk about your toilet habits, or the fact you can’t pass wind without being on the toilet etc! All I can say is give him time and be supportive, and hopefully the time will come when he can be more open. Good luck!

  20. Susan Kenny February 4, 2016 at 7:48 am #

    Hi
    I was diagnosed with UC in 2008 and was very very sick at the time. I was hospitalised for a while and then put on Prednisolone. The flare up lasted a long time and for about one year I had to very careful where I went and always had to be aware of where the bathroom was. I recovered well for a period of time but I had several flare ups since. I am on Mezavant tablets long term and I have been well for the last year. I definitely contribute my good fortune to healthy eating and keeping stress from my life as much as possible. Work no longer causes me stress as I keep work at work and home life is for me and family. I try to eat healthy most of the time and dare I say it but the odd cigarette seems to have improved my symptoms. All in all I am thrilled with myself at present and long may this spell of normal health continue. To all UC suffers I say don’t give up things will improve but you have to figure the best way for yourself. Good luck

  21. Stacey February 4, 2016 at 8:42 am #

    First I have to say I love this site – I love being able to go somewhere and read about other peoples success stories because it gives me hope. I have had UC for about 10 years and in the beginning I was a lot like Andrea’s boyfriend for many of the reasons others have posted (embarrassed, having to explain the disease to those who had never heard of it, depressed because it’s a disease that has no outer appearance so when you’re feeling terrible no one understands because they can’t see it and you just don’t want to explain it); after a while I became more open about it with family, friends (and even co-workers – so that they would understand when I wasn’t at my desk for long periods of time or didn’t feel good or was off work for multiple days because I couldn’t be away from the bathroom). Once that happened I started accepting the disease a little bit more and started looking for a GI that really understood what I was going through; and I have to say the last 6 years have been pretty good. I’ve had relapses every so often and it’s discouraging not knowing why it happens but I get up, brush myself off and continue on (it helps having an awesome support system at home with my husband and daughter – I honestly don’t know how things would be if I didn’t have them). I’ve been on and off different meds because for some reason after a while they just don’t work anymore. I try very hard to stay off the steroids because they just make me crazy. And honestly, lately I’ve been trying very hard to control it with diet, VSL3 probiotics and acupuncture – I’m still in the beginning stages of remission but so far so good. Hopefully Andreas boyfriend will come around; but in the meantime she is doing the right thing by being his support system and trying to understand this disease and what he is going through – in the long run that’s the best thing someone like us can have – support!

    • Adam
      Adam February 4, 2016 at 4:43 pm #

      Stacey,

      Big thx for being a positively awesome part of this site!

      You Rock!:)
      –Adame

  22. Melissa Lawler February 4, 2016 at 3:06 pm #

    I don’t think there is really enough information to fully answer the question. I do know that I am tired of seeking treatment. When I do receive treatment it triggers a c diff episode. I’m tired and not sure that I will continue to seek treatment because one, they don’t do anything different and two, the hospital treats me like absolute shit each time I am admitted.

  23. DebraK February 4, 2016 at 4:09 pm #

    I have been in a flare up for a good year, maybe two. My GI wants me to go on Remicaid but I just cannot force myself to do it. I was close once. I got a bad cold that lasted eight weeks and changed my mind on the Remicade, thinking my colds would hang on even longer if I was on this crap. I have been researching so much that I have analysis paralysis. I am impatient, I want a quick fix to put me in remission. I am so tired of being sick. I am mentally wearing down. I feel my hope fading. I want other choices than putting poisons into my body. Even the food I eat feels like poison sometimes. Why do they put so much junk in food? The pesticides, the chemicals, the hormones…no wonder we all get sick. I want answers to my questions and better options for treatment. I hate having no control over this disease…on the outside I look fine, but inside I feel I am dying…

    And on a second note, my son could be Andreas boyfriend. I am so stressed about that, but I don’t have good options and opinions for him. He pretty much knows he has Crohn’s–I do and his sister does. But he won’t go get checked out. I wish he’d at least check out a naturopathic doctor.

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