Hope to Meet Some People in My Area with Colitis

Tami who has colitisIntroduction:

Hi, my name is Tami. im 44 yrs old, married and have 1 son who is 15. I was diagnosed 16 yrs ago with Ulcerative Colitis. Seems as the disease, although is not as bad as it has been in the past, but still controls my life and caused me much anxiety. I hope to just make some new friends who actually know what I live with everyday.

My Symptoms:

My colitis is currently contained to 15 centimeters up my rectum. I am on Remicade for the past 1 1/2 yrs. I think its to strong for me as I have had severe constipation issues which is worse then going to the bathroom all the time. I have alot of gas and bloating still, mostly at night, which keeps me home. I do take miralax on a daily basis to help my constipation issues. I also when it gets close to my next treatment get mucus/blood and again its mostly at night.

My Story:

Just wondering if anyone else has dealt with the constipation due to remicade possibly being to strong for them. I am 5’3 and weigh 92 lbs. My normal weight is normally around 105. I have talked surgery with my gastro, but just am not ready to go there yet. I was also wondering if there are any UC’ers that live out in the McHenry, ILL area. There are no support groups close and would really like to meet others that suffer from this disease as well, for support.

In front of the house!

I have listened to Adams story and wondering if the cooking for UC has been of any help to people as well. As my eating habits have drastically changed I dont feel my disease is under complete control and I barely eat these days. I feel the less I eat the less symptoms I have, but that is not necessarily the case. I would love to be off Remicade and I would love to be able to make plans again and know I can follow through with them. That is the most hardest thing besides learning to not over eat all my favorite foods. im a planner and having to live life day to day is very hard for me and I feel so guilty with my husband. He is pretty much living with UC just not the physical symptoms. We lay around alot because I just have no energy to do anything. I also no longer work, so I have lost that sort of interaction with people. Does anyone else feel the guilt with there significant other and friends? I started seeing a psychologist but think it would be more beneficial to meet others living with this disease that live in my area. I think it would help alot with getting my life back.

Where I’d like to be in 1 year:

I would love it if I could just be able to make plans again. I live my life on a day to day basis depending on my symptoms.

Colitis Medications:

Im currently on Remicade, have taken Asacol, Prednisone, Imuran, all which ended up failing. Prednisone is by far the worst med I have been on. The moon face weight gain, loss of hair. Horrible

written by Tami

submitted in the colitis venting area




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5 Responses to Hope to Meet Some People in My Area with Colitis

  1. Beav
    Laura Beaver August 26, 2012 at 9:07 am #

    Hi Tami,
    I also have UC. I have been on Apriso – 4 pills per day. I have moderate to severe UC.
    I’ve noticed diet makes a huge difference. If I eat dairy, I pay for it. Sugars (refined) also
    cause issues and white breads.
    I am not allergic to gluten but have noticed when I stay away from bagels, muffins and donuts,
    my colitis is stable and I feel normal with no bleeding.

    I’m not sure what you eat at home but you may be allergic to something you’re eating and not even know it, which is causing the inflammation.
    I had visited a holistic doctor for 3 mos. in Florida but he was too expensive to continue going to because my insurance did not cover his visits. But he told me for UC I had to make a complete lifestyle change from my diet. He told me NO white bread or wheat bread.
    It’s hard to stick to but he was right, it makes a huge difference for me.

    Read about inflammation – I believe there’s a strong link. Also stress.

  2. Paul Willoughby August 26, 2012 at 2:35 pm #

    Tami,
    never been constipated with remicade, myself. Good luck.
    Paul

  3. Bev August 26, 2012 at 3:27 pm #

    Hi Tami…

    Just want to comment on your comment…I have taken blah, blah, blah,and blah, all of which ended up failing. That should tell us all something. The drugs used to treat UC do not work, or do not work for very long, or do not work again.

    I hope you will read some of my previous comments that I have posted on this site. I have pancolitis, and have for 13 years. I was on asacol for almost the whole time. It worked at the very beginning, but never again. I refused anything harsher, and I’m glad that I did. I kept taking the asacol anyway, because doctor man told me I had to. Forever. If the drugs are so useless, then what are we doing? Whjy do we keep taking them? I certainly did.

    Bullcrap to that. I decided to try a good probiotic ( it matters not which one specifically… one recommended for UC), and after two months felt so good, I was weaning myself off the drug before I knew it. I’ll never look back. Please read some of my posts. I’ve written the same thing over and over again so many times, I’m getting tired of hearing it myself!!

    Cheers, health, and tons of happiness…you deserve it,
    Bev:)

  4. UCinNYC
    UCinNYC August 26, 2012 at 3:57 pm #

    Tami, I know exactly what you mean about feeling guilty about not being able to go out with your husband and friends. Right now my husband is at a birthday dinner without me because I’m not feeling up to going.

    I got this book called Healing Foods: Cooking for Celiacs, Colitis, Crohn’s and IBS and my husband found a few recipes in there that were appealing to me, which allowed me to get some of my energy and strength back. That book has lots of color pictures, which is nice because everything looks appetizing. :) (Full disclosure: I just got a second opinion and found out I don’t have UC, so this book might not help you the way it did me, but I hope it does.)

    I’m really concerned about you having lost so much weight. Can you maybe talk to a nutritionist who specializes in IBD? Maybe your doctor could refer you to one?

    The Crohn’s & Colitis Foundation has a page where you can look for support groups. There were a few listed for IL; maybe there’s one close to you…
    http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/

  5. Steve August 26, 2012 at 8:13 pm #

    Hello Tami! I hope this message finds you well. I don’t want to bore you with one of my rants…so if you want to read one that I think could apply to your situation, put this in the search box at the top right…FDA Update Humira. It is an article Adam posted and there I suggested what I have always believed after being diagnosed 7 years ago and never having success with medications. In fact, with everything outside of Prednisone, my symptoms worsened(way more blood and cramps than I ever saw without treatment) and the Prednisone was no cake walk with all the side effects. It might open you to look elsewhere for help outside of the nasty medications that always seem to fail…Bev suggested probiotics, Laura and UCinNYC(I don’t think she ever mentioned her real name…sorry if I missed it somewhere) suggested diet, etc.

    Me? My advice would be to really research the SCD diet…specifically “Breaking the Vicious Cycle” by Elaine Gottschall(her last name cracks me up because it is almost what my plates say on my car—that’s for another story if anyone cares to know). Adam’s book is likely just as helpful but I haven’t read it…but you can look up ihaveuc on YouTube and you’ll see the kind of meals a person on SCD can have…in time. It doesn’t start out that amazing but it is not all that bad either. I would also recommend researching Dave Klein and picking up his book, “Self Healing Colitis and Crohn’s”. It is a different diet plan, or I suppose they should both be called lifestyle changes…because both SCD and and the raw vegan way go deeper than the food we eat. I digress. Even if you do not plan to eat raw as you will find in Dave’s book, it is is still a great read and one I would recommend to all people, including those not sick with a digestive illness. I have both of the above books and I’ve done the raw way…only stopping because it is not feasible to drive fifty miles one way for food a few times a week…or I would still be doing it. I’m trying SCD now so I’m still learning, but in the little time I have been doing things, I have seen positive results.

    Does diet work for everyone? Some would say no. I would say yes…when the principles are followed precisely and the body is allowed to partake in the process AND the person avoids the stress and other factors that can bring on UC and diseases like it. By that I am saying…lots of people seem to think…”so and so said this would be okay on this plan so I’ll eat it” only to later not feel well because they didn’t listen to their body or follow the plan completely…then they assume the diet will not work for them. Unless you are allergic to lots of fruits and veggies, or hate the idea of making fresh meals from scratch(much healthier than buying pre-made meals where they put all kinds of ingredients, no?), you’ll find success in helping your body if you choose to go that way.

    Like I said…I have the books and I know them inside and out. I also have studied a lot about nutrition as it relates to UC because my first semester in college was when I became sick…so if you have a ton of questions, feel free to send them my way. I’d be happy to help.

    Sorry if I suggested different methods too much as opposed to mentioning support groups or Remicade but I think the proof is in the pudding. You’re having to take a daily dose of another drug to combat a side effect of the Remicade…and you’re underweight, either from a lack of appetite because you know you will end up the bathroom or because of the medications. You can’t plan ahead and you’re living day to day just as someone with UC without any treatment does. Either way, none of it seems like it is any fun, nor is it really working all that well. If you’re happy with the Remicade, I’ll be happy for you…believe me I will…but is it giving you your life back? Or do you want more out of life where you can live free and be with your husband to do whatever you like without concern?

    Hoping I hear from ya and thanks for sharing your story…Steve

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