Ulcerative Colitis Tips


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Virginia’s Colitis Story

20 year old with colitisI’m from New Jersey.

I lived a pretty normal life before I got UC.

I went to community college where I studied nursing. I watched a lot of TV. I hung out with friends. I used to eat basically anything that I wanted. I don’t really know what suddenly caused me to flare up because it’s not like I changed my diet or anything. My doctors said it was probably stress but I didn’t feel any more stressed than usual so I don’t know. This disease sucks.

Colitis Symptoms:

I have a lot of pain, usually in the morning and at night. During the day I’m usually fine but that might be because I take a pain killer when I wake up and it lasts me through the day. I had bloody diarrhea for about 3 weeks before I finally decided to go see a doctor, the blood has stopped now, but I still have the diarrhea.

Virginia’s UC Story:

I went to the ER one night because I was having a lot of abdominal pain and I wasn’t actually expecting them to find anything, but they did a cat scan, and the doctor told me I had colitis. He didn’t really give me any other info so I went home and made an appointment with my GI doctor. The next morning I woke up with so much pain, I didn’t even want to get out of bed, but I went to see the doctor anyway because I wanted the pain to go away. I was thinking that she’d give me some kind of prescription and I’d be cured. Sadly, she sent me back to the hospital, where I stayed for the next 24 days.

They did a sigmoidoscopy and confirmed it was Ulcerative Colitis. It was pretty awful, I was in constant pain, I didn’t want to eat anything, I ended up losing about 15 pounds and becoming malnourished. I was only 115 to start with so now I’m down to 100 pounds, that part didn’t really bother me though because I w anted to lose some weight anyway. I had to get a blood transfusion and iron because my hemoglobin levels were so low. I was even on a cardiac monitor because my heart rate was really high.

The hardest part during that time was the lack of understanding from my family and friends. My parents thought I was faking the pain and thought I was addicted to morphine, which I wasn’t. My siblings were mad at me because they thought I was stealing all the attention from my parents. A lot of my friends never visited me or asked how I was doing. I felt pretty alone and I cried a lot during my time in the hospital.

I finally made it home after spending 3 awful weeks there and I’m doing better. I hate having this disease though, I feel like I’m constantly sad now because I’ll never live a normal life again.

Colitis Medications and How that is Going:

My doctor wanted me to take Humira but my parents didn’t want me on such a heavy drug, but after 3 weeks of seeing me suffer, they finally agreed to let me take it. Unfortunately, my doctor found out that I have inactive tuberculosis so I didn’t qualify for Humira. I’m currently taking 60mg of Prednisone and 1600 mg of Asacol. I’ll have to take tuberculosis medication too, in case I ever really need to take Humaira. So yea that’s my story of how I suffered with UC.

I hate this disease and I’m scared of having another flare up.

written by Virginia

Submitted in the colitis venting area

leave her a comment or write her a question below!







7 Responses to Virginia’s Colitis Story

  1. Maura carter February 20, 2016 at 9:06 am #

    You’ll get your life back once the medications kick in. My advice to you is to stay on them even if you feel better & think you are “cured” (not the prednisone but the ones that keep you in remission). I’m so sorry you have this disease. Hopefully your friends and family will become educated about it and understand your situation a little better. You need their support. Best of luck to you as you recover & regain your normal life! It will never be the exact same as before you were diagnosed, but it can be pretty close :)

  2. Mitch February 20, 2016 at 11:52 am #

    Virginia, there is some good news…. It gets better.

    It really does.

    Also, you are far from alone. For each of us, our stories will differ but ultimately the parts of our disease are similar. First, the pain and the discomfort and the misunderstanding from the people around you is normal, it is also treatable. First thing’s first, you tell people, especially your family, “I have an autoimmune disease called ulcerative colitis”. That is what it is. Your medications will wreak havoc on your system at times, and finding the right combination can be difficult, but work with your doctor and figure out what is best for you.

    It helped me to understand what was really happening so I did some research and talked to my doctor and basically our bodies see our colon as a threat and our immune system attacks it just like any other autoimmune disease.

    Adam put a great site together here with a ton of great resources to dig throu including some helpful information for your parents on different types of drugs and how they have helped or affected people with UC.

    The one thing I recommend to anyone new to this disease, even though it makes sense because the main symptom is that we are always in the bathroom, try not to be embarrassed by this disease you have. There are going to be good days and bad days and hopefully you will be able to get things under control and get into remission quickly. People live with this disease (not in constant daily pain) for very long periods of time with long remissions in between flair ups. And when you do flair up like you are now, talk it out, nothing you are going through is new to anyone on this site or thebfacebook page.

    Good luck on your journey.

    Mitch

    http://www.mitchsisms.com/random-musings/insidious

  3. Angel Weimann February 20, 2016 at 1:49 pm #

    Hi Virginia! My name is Angel, I’m 26 years old and i suffered from ulcerative colitis for 5 terrible years. I was diagnosed when I was 20 years old as well. I had moved to another state, away from my family, with my husband who was in the Marines. Even though I was happy it was stressful being alone with no family besides my husband and our 2 year old daughter. I started having painful symptoms and 10 to 15 bowel movements a day. I then found out I was pregnant and when I finally told my ob/gyn about my symptoms she sent me to a GI doctor who performed a sig and diagnosed me with UC. In the next 4 years after I had my second daughter I tried every medication for UC there is, including steroids, apriso, 6mp, and humira. I even tried special diets and herbal remedies. Some meds helped, others created more and worse problems than UC. After several hospital stays and countless rounds of steroids it became clear I could no longer live this way. I made the decision to remove my colon and have an ostomy bag. BEST DECISION OF MY LIFE!! I have a whole new lease on life! No more pain, no more being centered around the bathroom, no more anxiety or fear of having an accident in public, no more turning down invites to go out, I can be intimate with my husband anytime I want, I can eat anything I want anytime I want it. Educate yourself about ulcerative colitis and how to cope with it and stress. It’s very important to have a good support system so I hope the situation with your family turns around. If you have any questions for me or would just like to talk, let me know. Best wishes to you !

  4. maddy February 20, 2016 at 3:33 pm #

    Different stories reflect my own. My best help has come from functional medicine. For anyone who doesn’t know what it is, there’s a lot of literature out there. Currently I see both a western medicine g.i. MD and also an MD who practices functional and integrative medicine. Both have no problem with this. They really do complement one another. Oil of Oregano was a god send. (Grapefruit Seed Extract helped but didn’t do a lot. Goldenseal did nothing.) All this was under medical supervision. Liquid meal replacements to make sure I was getting the vitamins and minerals I needed. There is a great webinar on the CCFA site about the role of nutrition and UC flare ups. According to this, if I have interpreted it correctly, elemental diets bring people out of flares fastest of all. I am currently in remission and working to get rid of the IBS it left me with. It’s a slow, slow, up and down process, but I am improving. I take Lialda and cannot tolerate sulfa either.

  5. DebraK February 20, 2016 at 8:42 pm #

    It is a hard disease for non-UCers to understand. A silent disease that doesn’t usually show on the outside. People don’t understand the pain, the exhaustion, the frustration. It’s sites like this one–especially this one–where we can get advice and support that help us mentally and sometimes physically get through tough times. As far as friends, relatives, spouses, most of us are fighting this alone, I feel. We don’t typically “look” sick, so unfortunately don’t get much empathy. Be strong. There are plenty of us on your side…even if we don’t really know each other personally…we are connected by this disease…

  6. Kandis February 22, 2016 at 9:36 pm #

    I can relate to all of you. I am really depressed right now. I was diagnosed w UC about 7 yrs ago. For a while it was under control. Now it’s not. I have a 2 yr old son that I stay home with. He is extremely active and hard to keep up with. Last year I got really sick, lots of bleeding, diareah, gas, and never ending cramps and pain. I finally found a doctor that sent me to pain management. I have been doing a lot better. No more diareah and a lot less pain. The problem is my husband is very unsupportive calling me a lazy drug addict because I don’t work. I feel that raising my son is all that I can handle. My husband stresses me out everyday. He doesn’t believe I am sick. Some days I just want to give up. I’m exhausted. I don’t want to leave my son. I love him more than anything.

    • Sher April 8, 2016 at 11:43 am #

      Kandis,

      I hope you are feeling better… I also had a husband that thought I was lazy & making up symptoms & his being unsupportive stressssssed me out more, (needless to say that relationship ended). I wasn’t going to pretend for him that I felt well when I didn’t! However, we did not have children so I understand why staying is important for you. I do have a piece of advice for you though… Look up EFT therapy. It has helped me tremendously with stress & dealing with this disease & for depression. YouTube is filled with different videos that walk you through… I like Julie Schiffmans tutorial. She has an Video for digestive disorders, depression, relationship problems. I was sooooo skeptical & thought it was stupid at first, but it has helped clear my head & accept myself & condition a lot!

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