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Day to Day Struggles of Ulcerative Colitis

Introduction:

I’m a 31 male living in northern NJ who was diagnosed with ulcerative colitis back in 2007. I am happily married and have a 1 year old son who is a joy in my life. I am a database analyst in a semi stressful environment. I play hockey, ski and enjoy many other outdoor activities.

Current Colitis Symptoms:

My worse symptoms are the uncontrollable urges to go “number 2.”
Having to worry about where a bathroom is wherever you go.
Lower back pain, sore joints, fatigue

My Story:

As I said, I was diagnosed back in 2007 but I suspect had mild colitis pretty early on. My aunt and uncle have severe Crohn’s and my other uncle has ulcerative colitis. This is all on my mother’s side yet she stayed away from it but this crap was passed on down to me (lucky me).
I was in a long remission for about 3 years then this past fall I went on some antibiotics for an upper respiratory infection and all hell broke loose.

Since then, UC has been back with a vengeance. The worse part of it all is the uncontrollable urge to have to.. well how else do I say it… blow up the toilet. My wife is understanding but doesn’t truly understand what we go through. I also suffer from OCD and depression so when I know I am leaving somewhere my mind kicks in and all of a sudden I have to run into the bathroom. While going to the bathroom I get this uncontrollable surge in my body which makes my whole abdomen sore.
I’ve been caught a few times on my way to work sweating it out trying to pull off somewhere and find a bathroom. I’m so sick of this routine, going 5 or 6 times in the morning then worrying I’ll have to go on my way to work. The worst part is sometimes the urge comes so fast that it’s unstoppable. That’s all I’ll say there, I’m sure others can figure out the rest. Let’s just say it’s embarrassing being a 31 year old that has to worry about shitting his pants but I feel it’s safe to air this particular frustration in here ;-)
My doctor is pushing me to start the heavy hitting drugs (Azathioprine and Remicade) which are what I am most concerned / scared about. Being a person who worries by nature I see the side effects such as cancer, fatal infections etc.. And that’s it for me. As far as 6MP that is chemotherapy, how can I be comfortable taking that for UC?  If I choose not to ever take these I’m concerned I’ll develop colon cancer but I do know that the increased risk is not that high and having my butt exam every year or so is a great preventative measure.

My family is very understanding especially since half of them have Crohn’s / Colitis but bottom line is everyone’s experience is unique in some ways so something that helped for one person may not help for another.

I plan on trying the SCD. At this point I have nothing to lose and I’d do anything to stay off prednisone and do even more to avoid the hardcore drugs.

Having found this website which allows me to vent to people that actually understand has been extremely helpful and satisfying.

Thanks Adam!

 

Where I’d like to be in 1 year:

I want more than ever to be back in remission not having to worry about where and when I’ll have to go to the bathroom.
Medications:
The usual, Pentasa, Asacol, Lialda and of course…prednisone. The main ingredient in getting into remission for me has been the prednisone but I gain so much damn weight.

written by Jeff

submitted in the Colitis Venting Area





14 Responses to “Day to Day Struggles of Ulcerative Colitis”

  1. Polly
    PollyApril 30, 2012 at 2:46 pm #

    Hi Jeff,

    Sorry to hear about your current troubles… please know that you are not alone; there are plenty of us out there! Yeah, it’s definitely less-than-awesome being an adult and worrying about shitting your pants.

    It is frustrating that UC is so unpredictable and that it affects everyone differently. This makes it even harder to try to explain to outsiders (such as bosses and co-workers). “Aren’t you taking your meds? What did you do wrong? How long until you’re better? Your diet isn’t working?”

    My Doc has told me that my UC flares are caused by anxiety/stress (I am also a worrier). He told me to take GABA. It’s an amino acid that can be bought over-the-counter at a health/natural food store or co-op. I take 750 mg a day and it help tremendously. It has the same results as prescription drugs for depression, but without the side effects.

    Have you tried probiotics? That might help regulate your system and hopefully slow down the urges, and start to rebuild your intestinal flora.
    There are lots of posts here on ihaveUC.com about others who are taking meds and probiotics at the same time.

    Recently my Doc also told me to take psyllium 3 times a day. It coats and soothes the colon, and it also slows down digestion, which helps sooooo much. He was very specific about which type of psyllium to take, though. It is “Certified Organic Powdered Psyllium Husk.” It’s working wonders for me.

    Best of luck to you, Jeff, and thanks for writing.

    • JeffMay 9, 2012 at 4:53 pm #

      Polly,

      It’s so nice to talk with people who share the pleasures of this disease!! I am taking detailed notes from peoples responses and have a little list to go to my doctor tomorrow with. I went to a new doctor which I really like and he had me tested for C-diff and let me tell you that collecting stool is the most unpleasant task I’ve ever been tasked with.

      As I expected the C-diff test came back negative so back on prednisone. I’m going tomorrow because of a fissure I developed which bloos A LOT so I will mention the GABA and pysllium.

      Thank again..Keep in touch!

    • deanpFebruary 3, 2014 at 6:12 pm #

      Hi Polly,

      Thanks for sharing re: the gaba + psyllium husk. I’m currently experimenting with potato starch (and Resistant starches), which have a similar end result (ie. producing gaba).

      Dean.

  2. BevApril 30, 2012 at 4:53 pm #

    Jeff Jeff Jeff…

    You are ME all over!! Everything you say is so true. What a disease this is, right? That, as adults, we become number two incontinent. If someone had have told me when I was little, that this would be my life…well, I wouldn’t have believed it!

    I did not have the familial component, but think I acquired UC from the four courses of accutane (for acne) that I took in my 20s, and then two very powerful antibiotics (minocin and avelox), that I was prescribed for acne (again), and pneumonia. Ever since the avelox, for the pneumonia, my colon has been totally messed up! I have not been able to get the UC (actually I have pancolitis now, total colon colitis, which I think avelox gave me, because before that antibiotic, I only had UC with 60 cm involvement…but I digress) into remissiom. I have refused the steroids, remicade, imuran, and all of those other dangerous drugs that the gastro doc wants me to try. I don’t know how they can expect us to do that to our bodies. I know they are trying to help…but I don’t have cancer YET…and I do not want to get it!!

    Why the dermatologist would prescibe an antibiotic to someone who already had UC, is beyond me. Believe it or not, that was way before I had a computer and could research the drugs that I was prescribed. I didn’t know it could cause a flare of the UC, or that it was even an antibiotic. I wasn’t told either. This was the very same dermatologist who prescribed me accutane four different times prior. Back then, in 1997, there were no warnings about that drug causing all kinds of bowel diseases and problems. Blah blah blah…

    I do not blame you one bit about not wanting to put those drugs in your body. How will they even make you feel? There must be side effects. Even terrible ones. Nausea, vomiting, hair loss…geez! The doctors want us to try everything, and then, it seems, inevitably, get our colons removed. Only after we’ve tried EVERYTHING in the drug arsenal. What is the point of endangering our lives even more with these drugs? I just don’t understand. Our choices are so limited, and really suck! This damn disease…

    We’re all with you, Jeff. This disease is frustrating and cam make us feel helpless and hopeless. It seems that there are no good choices…and I am so tired of it all. It all gotten SO OLD. My posts on this website sound just like yours! Go figure…

    Cheers,
    Bev:)

  3. california karenApril 30, 2012 at 7:37 pm #

    well all u uc ers this last thurs another er visit but this time i got a prick for a doc and said no reason to keep you well send you home bleeding! and antibiotics! and the drugs made me itch for 2 nights and days so bsck to primary to get itch meds and some heavy sleep meds! now hub said thought this time you werent as bad because they didnt keep you, I said no the doc was just a Prick!the hospital couldnt reach my gi and she wasnt in the office, and to make things worse my husband and are fighting wich we dont ever do!!!!!he called me bitchy and hard to get along with and i dont do anything for him!!!!! Ireally need some help, im gettin to the point
    of not wanting to be around!!!! it would be easier on everyone else!!!!!!!

    • JeffMay 9, 2012 at 5:04 pm #

      Karen,

      Trust me I know what you are going through but don’t think like that. Aside from the colitis I’ve been on anti-depressents for a long time, now Paxil and I speak with a physcologist regularly. Hang in there it’ll get better.

      Please keep in touch.

      Jeff

  4. HeatherMay 1, 2012 at 7:55 am #

    I know it’s easy to be afraid of the heavy drugs but 5mp saved my life. I have UC pretty bad and I tried just about every dietary change to try and get into remission. Nothing worked for me. I was afraid of 6mp at first, but life is normal for me now. I can eat fresh fruits and veggies and live a normal life. I even took up running and run 4 miles three times a week. Because of 6mp I can be healthy and have ZERO bathroom worries.

    • BevMay 1, 2012 at 9:09 am #

      Really Heather? That’s great!

      What were the side ceffects of that drug while you were on it? Do you have to stay on it indefinitely? If not, are you on any meds at all?

      Bev:)

    • JeffMay 9, 2012 at 4:44 pm #

      Heather, I’m curious of the side affects as well. My new doc tested me for C-Diff (which i prayed it would be even thought I knew it wouldn’t) and it came back negative as expected. Back on prednisone but I hear that prednisone has as much or more risks than 6mp, Remicade etc..

  5. sallyMay 1, 2012 at 8:08 am #

    have you tried the suppository called canasa? i was in remission for 4 years on asacol, then BOOM! 6 months of bleeding. i’m now on lialda (apriso didn’t work) and the canasa. i have stopped bleeding. the urges are almost all gone and less gas. i will use the canasa until the doc tells me to stop. hope this is putting me back into remission!

    • JeffMay 9, 2012 at 5:06 pm #

      Sally,

      I haven’t tried Canasa but I’m going to my doc tomorrow and have compiled a list. I’m willing to try anything. The only thing I’ve tried similar to Canasa is mesalamine rectal suspension in the past. That seemed to help target the trouble area so might give that another shot.

      Thanks for the input..keep in touch!

  6. AidaMay 4, 2012 at 6:51 am #

    Jeff:
    Give probiotics a try!
    According to one nutritionist I consulted the best in the market are from http://www.natren.com
    According to my sister’s acupuncturist Dr. Ohhira Probiotics are the best http://drohhiraprobiotics.com/

    I have tried both and in my case Dr. Ohhira’s worked much better.

    Natren need to be refrigerated and Dr. Ohhira do not so you can take them easily anywhere.

    This site sells Dr. Ohhira’s Probiotics at a better price than the official site:
    http://www.crohns.net/page/C/PROD/OMX1030

    Regular consumption of Dr. Ohhira Probiotic Formula is strongly recommended for people with digestive challenges like Crohns disease, IBS, leaky gut, peptic ulcers, bloating and heartburn (GERD), ulcerative colitis, constipation or diarrhea, as well as those suffering from yeast infections like Candida albicans.

    Ohhira’s Probiotic is also recommended for people on weight management programs that utilize certain natural products, such as psyllium and other colon cleansers, as they tend to strip the colon of the good bacteria.

    Each of Dr. Ohhira’s Probiotics’ ingredients is readily absorbed and used for various important functions of the human body, thus enhancing proper cellular functions and strengthening the body’s autoimmune system.

    probiotics help to manufacture specific vitamins,
    probiotics regulate peristalsis & regulate bowel movements,
    probiotics assist immune functions by keeping the colon at the proper pH level,
    probiotics break down and rebuild hormones, and
    probiotics help to normalize cholesterol and triglycerides

    • JeffMay 9, 2012 at 4:45 pm #

      Aida,

      Thanks for the suggestion..I’m willing to try anything. I did try VSL3 for about a month but it was disgusting to take and refrigeration was a pain. I might give Dr. Ohhira products a try.

      Thanks!

  7. CatherineMay 30, 2012 at 3:57 pm #

    If you ever consider surgery, you are in the right place! My daughter just had her jpouch surgery at Englewood Hospital by an EXCELLENT surgeon. He does more surgeries for U.C. than anyone. Less than 2 weeks after surgery, my daughter feels FANTASTIC. No pain, no drugs, and only 4 or 5 B.M.s a day.

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