Looking Forward to a Normal Life

Introduction:

61 (soon to be 62) year old white female diagnosed with UC in 2009. Currently live in Florida and had lived a very normal lifestyle but now am placing many restrictions on myself.

My Symptoms:

Frequent urgency to move bowels
Blood (and clotting…is that normal?)
Rectal pain
No appetite

My Story:

While being diagnosed in 2009 have always had success with meds to put this awful disease back in remission, i.e., Rowasa, Prednisone. Unfortunately not working this time. Gastro doctor informed me that time choices were removal of colon or to start through a Remicade treatment plan. Remicade, obviously, is what I chose…only been 2 days with no result. My family is very supportive. I would never even consider colon removal without more dr. opinions. UC has definitely changed my life because now I feel that the safest place is within the confines of my own home. I am very concerned about getting on an airplane on Monday to go up for the baby shower for my first grandchild. Trying to think positive. I have many questions for other people afflicted with UC. Did Remicade work for you? After how many treatments? If not Remicade what did work? How quickly did it work for you? What did you do when you needed to board an airplane or leave the comfort zone of your own home? What about food? I’m almost afraid to eat most things or things in general because if I’m out and have an attack, not sure how close I will be to facilities. Have also been feeling very exhausted probably because of the loss of blood and not sure what supplement might be good to take….any suggestions? Plan to discuss this with my doctor but next scheduled appointment is not until the end of August. Has anyone resorted to removal of the colon because all else has failed? Not sure what all this involves and am almost afraid to research on the internet because sometimes too much information is not such a good thing but a friend did say she has a friend who had hers removed and lives a very normal life.

Where I’d like to be in a year:

In one year I’d like to be living a normal lifestyle and enjoying my first grandchild which is due on 10/11/12.

Colitis Medications:

Rowasa and Prednisone have worked in the past but not this time!

written by Florida Karen

submitted in the colitis venting area




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12 Responses to Looking Forward to a Normal Life

  1. Steve August 7, 2012 at 11:35 am #

    Hi Karen. I hope I can answer a few of your questions.

    I have never taken Remicade but my mom does. It seems to work for her, though I see her struggle and would tell her there are better options.

    From my understanding, as with most medications, a little time is needed to know if it works. Two days surely is not enough so stay positive. Even if it does not work, there is still plenty of hope, especially for you to get on a plane confidently and see your first grandchild. I’m not that wise enough to have grand babies yet, let alone kids, but I bet you are excited!

    If not Remicade, what did work for me? I was diagnosed in late 05. I tried medications but often found they all made me worse. I learned when I was diagnosed that there were possible natural alternatives but had a hard time finding the resources to try it out—time, rest, money, a supportive family, etc. That made it much harder so a lot of time, like you described, I was a prisoner in my own body and I just dealt with the illness because medicines made it worse. Then I went back to what I learned and finally worked at it. I changed my diet, specifically the raw diet and I did well…incorporating rest, exercise, lots of water, etc. Meditation and relaxation techniques were a huge help too. Now I am trying the SCD diet after—eating organic produce and having to travel to get it is taxing and with gas prices, yikes—getting the book, “Breaking the Vicious Cycle” from Amazon.

    How quickly has the diet changes worked? Well, speaking in terms of SCD, I made my soup a few days ago—chicken with no additives, fresh parsley, onions, carrots, celery, and salt…gosh, I am going to go have some as soon as I submit this comment!…and even though I have cheated slightly, I can already feel improvements. Going to the bathroom is easier. I go less and there is no mucus or blood noticeable. I honestly feel energized even though my body is rather beat up inside.

    What have I done to help me leave the house? First, food will help which I will touch on in a second. Also, stay positive and keep your stress levels to a minimum. Stress directly affects our digestive tracts, so being as calm as you can will go a long way. I know how hard it sounds—being stuck at a red light or on a long car trip—it all sucks and we’ve all been there. But learning to control your breathing and finding thoughts that keep you centered will ultimately help you avoid the bathroom. So will proper sleep, a little exercise, etc. For me, listening to music helps.

    About food…once upon a time, just in order to work, I would go 20 plus hours without eating. So I know exactly how you feel. It is even more tough when you are having UC symptoms because it feels like all food is bad but there are foods you can eat that will allow your body to avoid the inflammation and avoid the nasty symptoms. If you really want to change your symptoms, I would urge you to pick up the book above(or Adam’s book here, though I have yet to do that) because you will learn more than I can share here…but avoid grains(breads, pastas, dairy, refined sugar, fried foods, and heavily processed foods—store bought frozen meals or meals in a bag, etc. Vegetables, while healthy and actually key to any UCer’s recovery should be avoided in raw form, unless you have a juicer and read Self Healing Colitis and Crohn’s by Dave Klein. Vegetables from a can should be avoided. Frozen and fresh are okay if cooked really well. The fibers have to be broken down or our weakened guts cannot digest them, causing more mucus and discomfort. I could keep giving you tips but I would suggest researching the three books above(Adam’s book is talked about on this site) and picking at least one up, if not all three. Then you can have all that information at your finger tips and make the choices you feel are best for you. If you do have questions about any of the books or methods, feel free to ask. I’ll be happy to answer. To end on food, eat simply and make meals from scratch. The more processed something is, the more likely your body will not like it.

    As far as supplements, I am really shocked your doctor has not said anything. I find supplements unnecessary but even I raised an eye when you mentioned blood and no iron supplement. There are others here who can offer better advice so I am going to pass on saying much here.

    Colon removal…I would never do it unless I was about to die but I have heard of people having success. I have also heard of people still being sick because surgery does not correct the root of the problem—like a UC suffer gets their colon removed only to later end up with Crohn’s too. Why? Because their lifestyle choices remained the same, keeping the body in a perpetual state of illness. In other words, removing the colon never removed the cause of the illness so the body manifested the illness in a different place. It is sad because all too often the people who struggle are the ones who listened to everything their doctors suggested without getting second opinions or looking for other remedies. Whatever you do, give it all a chance before you consider colon removal. It may offer normalcy to some, but once you do it, there is not “undo” button.

    I hope I helped and didn’t ramble too much…given my own experiences, I know exactly how you feel but there are ways you can be well and very much enjoy your grandchild. Myself—I was diagnosed around the time my first niece was born. There are two of them now. They have yet to see me in truly great health but they should soon…in December I am hoping to take them to the National Aquarium :)

  2. April August 7, 2012 at 1:07 pm #

    I have had colitis for 22 years and i am 33 years old. I have been on Asacol for 20 years regularly and i have been on prednisone quite alot. I am currently on Pemicade now for 1 year and it started working after my loading doses about the 2nd or third one. Although some epole do feel relief after the first infusion. I am also taking Iron supplements like ferrous gluconate 300 mg for blood loss and anemia. you may want to inform your doctor or ask if this is ok. But after 22 years i am now facing a colon removal or colostomy surgery, but all in all i have had a pretty successful control over the disease but have had enough of the gaining weight from prednisone and all my flare ups. Just looking for a easier life. And yes i find it hard sometimes to schedule trips around bathrooms and mapping places to be available for bathroom use. Im sure my family gets upset about short distance travelling.. but hoping to do more after surgery. Hope all goes well. Hang in there.. hope it gets better for you. Good luck :)

    • Florida Karen August 8, 2012 at 7:24 am #

      April:

      Wow…22 years is a long time. I know how you feel about the prednisone. My feet were so swollen and I felt like a chipmunk storing nuts for the winter. Fortunately so far my husband has been very supportive but it is tiresome planning your life around when you may need to use the facilities next.

      Next Remicade treatment is scheduled for 8/17 and I am hoping for a little more success. I do plan to talk with me doc about iron supplements since I feel so tired. Curious if you have kept with the same doctor all these years or have gotten other opinions?

      Goog luck to you and do hope that colon removal can be avoided for you!

  3. April August 7, 2012 at 1:08 pm #

    *** Remicade ***

  4. JamieIsLame
    JamieIsLame August 7, 2012 at 1:27 pm #

    Hey Karen :)
    My name Is Jamie, I too am on Remicade! you wont see a result right away, it took me 2 weeks to notice any change and I wasn’t fully in remission until my 3rd infusion!
    I swear by the stuff, it’s an amazing drug!

    I’ve been fighting colitis for just under a year, I’m 18 and so far this is the only drug that’s worked for me! I hope it works for you too!

    also, about the clotting. that is normal, it usually means you’re colitis is further up or pancolitis. it doesn’t really change anything, it’s all treated the same way!

    • Florida Karen August 9, 2012 at 7:12 pm #

      Hi Jamie! So sorry that you have had to deal with this dreadful disease at such a young age. Infusion #2 is on 8/17 so I am hoping for some better results. For me it almost seems that food is my dreaded downfall…every time I eat I get that crampy feeling. Hope you continue to do well.

  5. Maggie August 8, 2012 at 7:21 am #

    Hi, Florida. Remicade worked immediately for me but I’ve been off and on it 2x so can’t go back on it. It sounds like good results for the people here so I wish you the best of luck. There are a lot of good supplements out there, too, that can help and don’t forget to watch your diet. I am also a 61 year old female living in Oregon. I had mild uc in my 30’s but didn’t know what it was till I was in my early 50’s. Best of luck to you.

  6. Florida Karen August 8, 2012 at 7:27 am #

    Thank you Maggie! Was not aware that if you go off Remicade you can’t go back on…why is that?

  7. shelly in maine August 8, 2012 at 8:51 am #

    Florida Karen this is Shelly from Maine who used to live i n Florida! :-)
    UC is not easy, but trying to stay 1 up mentally on it can help, being prepared-carrying change of clothes, etc. just in case, and well read Plus PROBIOTICS. You should read the remicade survey Adam did. Also probiotics and diet do play a key role contrary to Dr.’s popular belief! Read some of the stories and you will see! There is life with UC.
    There is some kind of disability card from the CCFA site you can download. Perhaps you could contact the airline and get some kind of assistance type thing like the elderly perhaps with a note from your GI/or regular Doc.? I’m not sure because I don’t travel. Perhaps you could contact CCFA plus they have a card that says “I can’t wait” for a direct spot to the front of the bathroom line! I never had time to pull out the card! :-)
    Oh, forgot to mention a sense of humor and destressing activity. :-)
    Open this helps, Shelly

    • Florida Karen August 9, 2012 at 7:17 pm #

      Thanks for responding Shelley. I am trying yo keep positive but sometimes the mind takes over. I love the comforts of home. Are you currently on any meds? Infusion of Remicade for me is 8/17 and I am hoping for a much better result. Do you have any issue with dairy products?

  8. Maggie August 8, 2012 at 2:55 pm #

    Hey, Florida Karen. The reason you can’t start and stop Remicade is because our bodies build up antibodies to it. My rheuamatologist prescribed it and it was after I went on it that I learned you need to stay on it for the rest of your life because of the antibodies. The 2nd time I went on it I started itching all over and told my nurse and she immediately gave me Benydryl and it stopped the itching. Another person I talked to about this said he got all swollen up, his throat was closing on him. I think this is something the docs need to tell their patients BEFORE they start this stuff. The reason I stopped and started and eventually quit was because of the high co-pay out-of-pocket cost which was $650 for me at the time. I did get some help with the co-pay but still had a hard time paying for it, which is too bad something that can help costs so damn much.

  9. shelly in maine August 10, 2012 at 8:25 am #

    Hi Florida Karen,
    Sorry about all those weird self correcting typos! Anyway, I know 100% about the comforts and safety of home.
    I just rewrote my story..”.Grimm Reaper Uc…”couple of weeks ago, but I am Med free after 30+ years of doagnosed UC, but really a lifetime! I did do remicade and it worked for 3 good years, but like everything else I became allergic. That’s why I say to do your research and be well informed because the doctors will blame everything else besides they meds. Not saying they are bad, but just what they’ve been taught. Anyway, I never got out of the maintenance dose and actually had a higher amount every 4 weeks. There are discount programs as well-remistart-you can Google it.
    I highly recommend probiotics-i take a prescription amount of vsl#3 DS, but others take over the counter you can read what Bev takes on most her posts…right Bev? :-) :-) I also take omegs 3’s -4g’s(I have an rx for lovaza for that) please read up on that and really look at diet-scd and gaps they make sense I am not strict, but staying away from the processed foods is key, no alcohol, no soda, limit sugar,and bread,low fat is good. I can tolerate some skim milk with my cereal.
    Soup very basic and no spices -i just did chicken with very well cooked carrots and no yolk noodles-will help with the stomach aches, etc. Smoothies, too. Small meals. I could go on and on.
    Hang in there…read lots and empower yourself. Look into those other things I mentioned in the last post!
    Good health, Shelly

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