My Butt is Ruining My Life!

Jackie with UC full shotIntroduction:

Hi. I was diagnosed with UC in December 2012 after a colonoscopy because of my severe bleeding. My symptoms started a year before I saw a doctor…I was embarrassed and terrified of what might be wrong…

and I didn’t want a doctor

looking in my butt :

( It all started with mucus and then light blood and then one day I thought I had diarrhea but it was all blood. I almost fainted at the sight. I tried to heal myself through drastic measures. I did an all water fast for 30 days, zero food or juices. This turned out to be a HORRIBLE idea and no one should do this in my opinion. Finally I got so weak and delirious that my parents forced me to go to the doctor. Im thankful that they did. I needed a blood transfusion and stayed in the hospital for 5 days. When I have to go to the bathroom its urgent, like 1 minute warning urgent. I’ve had accidents more than 10 times in the past 2 months because of not having enough time to get to a bathroom. That really takes a toll on my self esteem and mental state.

Some more about me:

I’m 31 and single with out children by choice. I like being single : ) I love to get dressed, do my hair and makeup and go out with friends. I love to go to comedy clubs and I’m a major foodie. I’m a chef so Im always cooking for family and friends even though I cant eat most of what I make Lol. I love being by the water and having cocktails and laughing with friends. I like to think I’m funny, very compassionate and loving. I read about health and nutrition allllll the time. I cant say Ive been that great about following the advice I give to others.
My sisters like to randomly buy me toilet paper because its crazy how much I go through. We’ve learned to laugh at some things.

Symptoms:

: ( 5 or 6 BM’s by noon. 8am-12noon is a very rough time for me. My BM’s are full of blood and leave me exhausted. Sometimes my hips and joints hurt so bad I have to get back in bed for hours until its better. Stretching does not help. Throughout the day I have 10 more mucus-y/blood movements which are super urgent. I have about 1 minute or less to haull a$$ to the bathroom. Ive had accidents over the past few months because I cant get to the bathroom in time which makes me really sad and frustrated.

My Butt is Ruining My Life

I use to be the life of the party, a hard worker and just always out & about doing something fun. Not any more, I feel like a MAC truck hit my life. I’m not working because I’m too weak from severe anemia and I cant stop using the bathroom. I don’t go out often because I don’t feel well and I’m nervous about bathrooms being available. I’m tired of my butt being probed!!!! My doctor sucks…he has no answers or suggestions for me. All he did was diagnose the problem and then basically I’m on my own to figure out the solution. He says diet has nothing to do with UC….WHAAAAT?!?!? Tell that to the Arugula I ate that later made my stomach feel like that alien from space balls was going to pop out of my stomach!!!!
*Currently applying for medicare and then I’ll get a new doctor*

I’m blessed in that I have a really loving family. I moved back in with my parents and they are helping me a ton! I can’t thank God enough for my family. I was not close with my family before I got sick and now here we are talking about poop…that’s LOVE! Lol

Sometimes my mom is insensitive and makes jokes about how much toilet paper I go through or that I get to nap all day. She dosen’t realize I’m not napping because I want to. I would love to go back to work and pay my own bills. I would love to only nap on Sundays because Ive had a long week and worked hard…not because my skeleton is aching like crazy.

I’m most concerned that I won’t find what makes me feel good again. That I’ll be stuck on what feels like a loser path of not working, living with my parents, being broke and frustrated with my body. Things could be worse. I thanks God that I dont have cancer or something worse.

QUESTION:

How do you get out of your own way/negative thinking?
How do you manage to leave the house…like do you not eat for certain amount of hours beforehand?

Medications:

Lialda 4 pills per day with no results/changes.
Coconut oil and mango in morning smoothies seem to help a lot. Less blood in BM’s

written by Jackie

submitted in the colitis venting area




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14 Responses to My Butt is Ruining My Life!

  1. Freddie
    Freddie May 3, 2013 at 10:21 am #

    Jackie sorry to about your tough time. I was diagnosed in July 2012 but, did not have a flare up until Dec 2012 it lasted till Feb 2013. In response to your question about negative thinking. I can sympathize with on that, I found it best to try and do something that I liked no matter how bad I felt. I would ride my bike on a stationary trainer. This helped me clear my mind and the exercise actually helped me with my symptoms. It is also gave me a since of normal life even if it was for a short period of time. In regards to managing leaving home, I would eat several hours before I prepared to go out and made sure that I hit the bathroom right before I left home. Additionally, I would make sure a packed a safety kit (spare clothing, tp, wet wipes, and a large zip-lock bag.)

    About diet and UC, your doctor is absolutely wrong. I bet he told you that there is no evidence that link food to UC. Of course there is no evidence, because no one a study. Who is going to pay for the study? The pharmaceutical companies. I found that what I eat directly effects my symptoms. I have progressed through several meds (Lialda and Prednisone) and I am on Humira now and hate it. I found a book called Breaking the vicious cycle, it is about intestinal health through a specific carbohydrate diet. I am in the process of starting this diet. I have read several good reviews about this diet.
    Hang in there things will get better.

  2. Caroline
    Caroline May 3, 2013 at 10:38 am #

    Jackie,

    So sorry you are having a rough go of it. I was diagnosed in January during a terrible flare – and I felt so hopeless on many days. For me I was just scared I would never get better. I would rather control things naturally in the long term, but I needed a round of prednisone to jump start things for me. It’s a terrible drug but I felt better so quickly – it’s funny how much your attitude will improve when you can get out of the house without worrying too much.

    I have had great success with the paleo diet, probiotics (VSL DS), and supplements (Vit. D, glutamine, and astaxanthin). I also am taking Apriso but would like to wean off of it once I’m more confident. This site is a great resource – keep trying things until you find what works for you!

  3. Teanna
    Teanna May 3, 2013 at 11:14 am #

    Hey Jackie, sorry to hear about the UC, it’s definitely a tough battle. In response to your question about leaving the house, I definitely agree with Freddie about the ‘safety kit.’ I’m 22 and have been in a flare for 4-5 months right now, and I only have accidents about 1-2x/week. I say only, because during my last flare when I was 20, I had one at least every day, sometime 3 a day!! It was horrible (I sometimes have so little warning that I can’t make it to the bathroom when I’m in my own house!!). As awful as it sounds, my mentality has started to become “I might have an accident today. But I’m still going to go out and do stuff. And if I have an accident, I’ll just deal with it.” I throw on my adult diaper, put some spandex over top in case of leaking, stuff my safety kit in my purse, and off I go! It’s not easy, and I definitely do get sad and frustrated sometimes (I’m a 22 year old girl.. I should be wearing sexy, lacy panties and feeling like I’m in the prime of my life, not rocking a giant Depends!), but it becomes about trying not to let UC control your life.

    I also just wanted to comment on your sisters buying you toilet paper.. I’ve always thought humour was a great way to deal with this disease (everyone’s different of course, but from your post you strike me as someone with a great sense of humour). The other day I was talking to my dad and telling him I was feeling unproductive (I’m not working either) and he said “Why don’t you go babysit your niece (she’s 9 months). You know.. you can change her diaper.. she can change yours..” We both burst out laughing and it was so nice to know there’s people in my life who know and understand my disease and are there to help me through it. So when you can, laugh about it, make light of it and it’ll be easier to cope.

    Last thing! I had awful joint pain at the beginning of this flare and my mom bought me and “EFX” bracelet. It’s got holograms in it, and it’s often marketed to athletes to improve balance, strength etc. but it can also help with joint pain. She also got me some extra holograms, and when I feel joint pain coming on I just tape them to the joint. I’ve found them very very helpful. http://efxusa.com/ if you’re interested!

    All the best!

    • Freddie
      Freddie May 3, 2013 at 12:21 pm #

      I agree that humor has helped me deal with the disease. In January some of friends has a port-a-lot delivered to my house as a joke. I came home from a doctor appt and there it was sitting in my back yard with a sign on “use in case of an emergency”. I laughed my a$$ of about that one.

  4. Angela May 3, 2013 at 4:38 pm #

    Hi Jackie!

    I’m sorry to hear about UC! I have to agree with Freddie and Teanna. Having people around you who know whats going on and can still help make you laugh is soo valuable! I’ve had UC for 11 years (I’m 24) and my family and close friends have been great all these years. I haven’t been in a flare in some time but I do still have bad bouts of joint pain sometimes which makes me look like an old woman trying to stand up and friends have taken to saying “lets go grandma!” which always makes me laugh. Keep making jokes about this (I love your Spaceballs reference)and I still hate having my doctor look at my butt. Its particularly depressing when you’re having your colonoscopy and there’s a cute, young anesthesiologist.

    Another big thing to keep the negatives away is to keep reminding yourself that you will BEAT this. It might be hard to see it now, but you will! :)I’ve still done everything I want to. It just takes time to heal back up and then you won’t have to worry about leaving the house (I’ve routinely made it through 8+ hour road trips). Just stick with a good diet that seems to work for you and keep laughing!

    Good luck with everything!

  5. Artie May 3, 2013 at 7:06 pm #

    HI,
    I was diagnosed in January and had almost the exact same symptoms as you. We def feel your pain and can relate. In fact the Mayo hospital dr who looked up my backside said it was the worse he had ever seen in 25 years so that was great news.

    I never moved in back with my parents (I am married with kids – lol) but my mom actually came over on days when my wife was working and basically helped pick of the slack aka take care of me. It actually brought us closer together even though we had our moments.

    So I know you may not have the insurance but you probably need to be on something stronger than Lialda. I just had my fourth infusion on remicade AND I am taking Lialda, plus mesalimine enema, plus all the supplements mentioned on this site. After fourth months I am def a lot better but not 100%.

    Anyways, I am not saying meds are the way to go, but I do think when we are at this state of colon damage it takes A lOT of time, diets and yes I believe meds to pull us out of it.

    Like I said, I just had my fourth infusion of remicade yesterday. Interestingly, the guy next to me was infusing Vedoliuzmap, the trial medication. My GI office only had great things to say about Vedo and how it will be the first line of treatment for moderate/severe Colitis. It basically works like remicade but has less side effects and targets the gut. This patient actually said he plays tennis after his infusions if you can believe that. They are saying it will def be FDA approved and is in it’s final trials so should be sooner that later. That will just be another option for us that go the drug route.

    Lastly, fecal transplants are another option to research. Starting next week I am actually going to perform 7 days worth or more of transplants to see if that helps improve my condition. I even informed my Dr that I was going to try it. They were not against it but could not not give me the “ok” either because it’s not something that is FDA approved. They just asked me to wait a week to see how this fourth infusion goes. Sometimes when you see improvements and you are doing multiple things it’s hard to figure out what is helping thus why they want me to wait a week.

    No matter what you do and like Adam always says, it def will get better!! It just takes time.

    Artie

  6. Andy May 3, 2013 at 11:50 pm #

    It will get better. But you have to find your path.

    I have never seen the same thing work twice, so try everything.

    Make sure you get your vitamin D levels checked, take a folic acid supplement to reduce chance of cancer(folate is better, but dont take too much, or just eat liver regularly). Glutamine, probiotic, pre-biotics, some zinc work well for alot of people, but they aren’t a cure for most. There is great research going on with helminths, fecal transplants and olive oil that looks very positive.

  7. moe May 4, 2013 at 8:40 am #

    Dear Jackie
    I really feel what you are going through. I was unlike to have UC during my college and as a young engineer the loser path was not an option. I to, had to move back home and continue my degree at a nearby university. Now, I have few flareups per year and I have great family that understands what I am going through.
    The thing is ….don’t lose hope. We all thought the same!!!! I am getting better with time??? .
    Well, Think about now and forget about the future.
    First thing first, get a medical insurance and make sure you get one that covers remicade .
    My advice is to get rid of anything that can cause you flareups and eat smaller portion of foods and no antibiotic without taking probiotic (two times I been infected with C-diff) also stay away from these.
    1. Alcohol …. Not even one beer.
    2. Food spices.
    3. Caffeine and pop drinks.

    start with a round of prednisone and soon as the bloody stool stops, taper it off

    Take your current meds with food. Best way is to take it in the middle of your meal; I feel that by using this technique, I will give the meds more time to work in my colon. ( it works for me)
    Also probiotic seems to help a little with the gas and bloating
    Stress management is essential. Exercising daily can help relieve some of the stress.
    UC cause a lot of stress and stress can cause flareups
    I am currently having a flareup…. It’s not bad, but it is exhausting …. What is different from yesterday is that as soon as I got up, I showered then went to the gym. As soon as I got back to my room I felt that I had to go to the restroom!!!. I also noticed the same thing when I was in college or work, 75 percent of the movements happens to me at home.
    anyhow…. a day with out workout 7 BM with workout 4 BM

    Try and leave your house more often, I know it’s hard but maybe you could use some adult diaper as failsafe. I have used it before and guess what, the only accident I had was at home.
    Stay strong an positive
    mOe
    Age:27 , diagnosed at age 20 with sever UC
    Pentasa 500 mg 2 taps twice per day , remicade infusion every 8 weeks (started 5 years ago)
    Prednisone only when blood is presence.

  8. Jackie with UC
    jackie May 7, 2013 at 3:21 pm #

    Thanks so much every one!!!! This is such a good place for support. I was having a bad day when I wrote my story. Im not usually that negative but I guess we all have our days. I pray that we all feel better xo

  9. Agnes May 7, 2013 at 9:00 pm #

    Jackie,

    Colitis is hell on earth. I was diagnoses with lymphocytic colitis back in Oct 2012 and my family was anything but supportive at the time. They thought my diarrhea was anxiety induced and that I wasn’t really bleeding with bowel movements; even after I showed a bloody toilet bowl to my mother! I would suggest that you see a gastroenterologist that specializes in colitis and has an office or hospital setting that is equipped to deal with any issues that arise. Like my doctor’s office has the GI LAB next door so when i get any work ups the information is right in that same office and less stress about getting results and making appointments. It does sound like you need to be put on heavier medication because your symptoms are pretty moderate to severe and not improving. As for your family, people are always going to judge whether or not they have a disease, just keep doing what improves your symptoms and makes you feel 100%. I hope you start seeing improvements and feel better soon! I would suggest stay away from high fiber foods and dairy products at the time. More binding foods like crackers, toast, applesauce with no added sugar, and white rice. Keep your fluids up and have a plain yogurt a day to add probiotics to your system. I recommend StonyField plain greek yogurt; lots of live cultures and low in sugar!

  10. Michael Hurst
    MichaelKHurst May 13, 2013 at 12:22 pm #

    Hi Jackie,

    I have a couple of suggestions to your questions. While I dealt with Ulcerative Colitis for over 12 years which brought me to the brink of surgery. Fortunately I am now done with it and have been symptom-free without drugs after using self-administered fecal transplants, which I go into more detail about on my website http://www.FecalTransplant.org

    In terms of dealing with negative thinking, getting out and being around people is helpful and being determined to keep making progress on goals. As a happy bachelor in his early 30s, my dating life was pretty good and I found many women who were very understanding about my health condition, even if it meant having to let their bathroom vent for some time after I used it. Anti-depressant drugs were also helpful to me, and ultimately the anti-depressant drug Bupropion (Wellbutrin) seemed to trigger an almost spontaneous remission in me. There is some evidence that the drug is also a TNF-a inhibitor similar to biologic drugs like Remicade, however without many of the side effects.

    As for leaving the house, Immodium (Loperamide) is very helpful. You can actually take it continuously, including an hour before meals. Gas-X (Simethicone) is also very helpful too. I agree with Agnes about diet including binding foods and avoiding unfermented dairy. I had good results with bananas or banana bread and / or water soluble corn, or gluten-free wheat starch like Benefiber for soaking up excess water and slowing down bowel movements. I agree with Moe about diet and leaving the house. When I left the house I often had fewer bowel movements, maybe because I had too. I also discovered that sometimes I had urges, but over time I discovered I could control them. I also did kegel exercises, which I had read about for boosting sexual health, but were originally used to help pregnant women control their bladder. These muscles can help control bowel movements on the go as well.

    Also avoiding carbonated beverages including beer was helpful (I switched to wine and liquor instead.) Fruits with high amounts of vitamin C while healthy also seemed to trigger bowel movements. I also had good results by making my own yogurt and fermenting it about 24 hours to break down the lactose, similar to the yogurt for the Specific Carbohydrate Diet (SCD.)

    An all-liquid diet or mostly liquid is not necessarily a bad thing, bowel rest is one way of treating a flare, the elemental diet and the starter diet for SCD utilize this principle. However you still need to make sure you get essential nutrients and especially protein to heal damaged tissue. I had great results using Muscle Milk, sometimes mixed with rice milk and flax seed oil for a complete meal replacement shake. However binding agents, especially from banana bread was very helpful. There is a great recipe for brown sugar banana bread for IBS which I found to be very helpful and deliciously addictive.

    For energy, high amounts of B12 Vitamin supplements or self-administered injections as well as high amounts of iron supplements, including iron glycinate (Comfort Iron at Vitamin Shoppe) is very helpful. If you get enough iron and b vitamins you can help keep your energy level up by maintaining your red blood cell count.

  11. Emie
    Emie May 21, 2013 at 8:42 pm #

    Hi Jackie,

    I totally feel yor pain! I battled uc for 9 years, tried everything, had to quit my job, didn’t do anything because I was to scared, and let me tell you, that is not living. I too am a very social person, I love going out and having a good time. I finally decided in October of last year that I was done fighting uc and that I was going to have surgery. That was the best decision I ever made. I was very scared because I am a little vain and didn’t want to do that to my body and I was worried about what other people would think, that they would be able to see my poop bag. I had surgery in December, had the bag until the beginning of march and my life has been so great since then. I went out to the bar and danced and had a great time while I had the bag and no one even knew, and I’m not a big girl and it wasn’t hard to hide. I went back to work 2 weeks after my second surgery and have been able to eat whatever I want except for spicy things. If you want to read my stories they are in the before and after surgery section. I hate to hear of anyone feeling the way that I did for so long. It is such a terrible disease and it makes you feel so alone. If you can get a good doctor and a good surgeon I totally recommend having the surgery. In a matter of 5 months I have gotten my life back. If you have any questions please feel free to ask. You have found a great website with a ton of people to help you no matter what you decide to do. Best of luck to you!

    Emie

  12. Blake May 22, 2013 at 9:47 pm #

    Hey Jackie,
    Sorry to hear about your butt! My butt used to piss me off too. Shit was serious! Haha! I was sick of the doctors looking in my ass, sick of the bathroom, sick of the blood, sick of the occasional crap in my pants cause I couldn’t make it in time. I know what you’re talking about. I still remember my crap schedule. I would take about 8-10 dumps before I left for work. This was in about an hour an a half window. The mornings were the worst! I would usually end the day with 15-20 trips to the crapper.

    I did all the drugs, Asacol, prednisone, Remicade… I can’t even remember most of them anymore. I got the only fix known to UC, colon removal. I was out of choices, but by that time I was ready for them to operate because I was miserable. I’m not trying to pressure you to join the colonless club or anything, but just want to throw it out there like Emie did. Like Emie, I’m so happy I did it. Pretty sure I would be dead right now if I didn’t get it, but that’s besides the point. I’m here to answer any questions you have if you feel like that may be an option. I hope your UC goes into remission for the rest of your life and you never even have to think about it again, but just in case… let me know if you have any questions. Good luck!

  13. Don
    Don May 23, 2013 at 9:42 am #

    Hi Jackie! Reading your story reminded me of how much pain and torture I have been through. I would get really depressed when I had accidents. I would feel that I had no control and it was my own fault. Weird! When I was first diagnosed in 2007 my GI doctor told me there was no cure and that I would have this for the rest of my life. I cried after that phone conversation but then cussed him out and decided that I was going to find a way to get better. He also told me, as have other doctors, that diet has nothing to do with this disease. I couldn’t accept that and began my search for an answer. That led me to Elaine Gottschalls website and her book titled Breaking the Vicious Cycle. From day one on the SCD diet(Specific Carbohydrate Diet) I began to feel better. There was so much damage to my colon that it took 2 years to heal! The diet is a very healthy one and really worked for me. I had been hospitalized twice for 5 days each since 2007 and now I’m pretty much back to my normal lifestyle. I go out dancing and have a few drinks with friends (vodka and water), I work 50 hours a week in the engineering department, and my wife and I love to take trips, go to concerts, and explore the countryside in the convertible. Please consider the diet. I truly believe it is the answer.
    Take care and let us know how you are doing ok?
    Later,
    Don

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