Losing It

Introduction:

I am 41 yrs old and live in the south; close to New Orleans, LA. I am married and have an 8yr old son; who is everything to me. I was diagnosed with UC in 1994.

Some more about me:

My favorite thing to do is read. I read everything and everywhere. It’s the perfect place for me to escape my own mind for a little while and it relaxes me. I love board games and video games that the whole family can play together. I love spending time with my son. I love the internet. I also love coloring…always had since i was a kid, especially when i am sick in bed. I have a whole bunch of scrap-booking stuff and pictures, all ready to be put together, i just get so overwhelmed when i think of starting. I have 9 years to catch up on. I love watching tv and listening to music.

Symptoms:

I am currently in a flare (since late October). Last scope was last month. My entire colon is inflamed, I have proctitis, a fissure and hemorrhoids. Having terrible stomach cramps, diarrhea, gas, nausea, lots of blood (mostly from the fissure). I am exhausted and have very little energy. It takes all i have to make it to work everyday, by the weekend all i want to do is rest, but then nothing else gets done I and i miss out doing things with my family. . Oh and I also have migraines. When I am down with my UC those migraines love to pop up.

Losing It

I have had symptoms of UC since high school. When I went to my doctor at the time with blood in stool, he actually thought it was my fault (or my boyfriends/now husband) and that i had a tear which was causing the blood. We were 16 and definitely weren’t doing anything that would cause a tear. No tests, no nothing. Especially no dx. I never went to him again. In my early 20’s I started having symptoms again but much worse. I was pointed to a gastroenterologist and given a dx of Ulcerative Colitis immediately following a colonoscopy, even though she told me before the scope that she was pretty sure I had UC. Since then, I have seen quite a few different GI’s (including one who made me cry by refusing to believe i was taking my meds as directed and told me i could die) until I finally found the right one a couple of years ago. I travel an hour to see him and it is so worth it.

Stress plays a major part of my flare-ups. This recent one I have been dealing with layoffs at a state run hospital I work in. The lay-offs happen about every 4-6 months and finally in the coming months, we will be bought out by the private sector. Everyone will be laid off and we will all have to reapply with the new company for our jobs, knowing they will not need all of us. I am on intermittent FMLA, which means my job stays safe when I have to be out due to UC issues. When we are all let go, I will lose my insurance. Then I will have to try and find a job in my little southern town where it wont matter if I have to excuse myself to the bathroom suddenly at any time. That rules out a lot of jobs.

Of course there are always other stressors including several family members who are very sick, etc. There always seems to be something to worry about and I am definitely a worrier.

My diet is a big issue right now also, I weigh more now than I did during my pregnancy. It seems the only things I can eat that do not hurt my tummy are fattening. I try to exercise but don’t usually have the energy.

Medications:

Sulfa drugs were quickly ruled out when I broke out in a rash. There have been so many meds since I have been dx’d, I feel like a guinea pig. Asacol worked for a very long time, until it didn’t anymore. I remember trying 6MP which made my liver levels out of whack. I took steroids off and on for years. I am now on Lialda, max dosage. My latest flare started last October but I tried to self treat with retention enemas, suppositories, etc. that have usually helped me cut a flare if I caught it early. Earlier this year I gave up and went to my doctor. After the colonoscopy, he came into the room and was talking about options…surgery, biologic drugs, etc. I think I went home and cried the entire weekend, then I started scouring the internet for answers and info on these “options”. I didn’t like what I found…..surgery doesn’t seem to be a cure all and comes with its own complications. The biologics scared the crap out of me, especially when I told my sister that it listed a slim chance of lymphoma….what are the odds that a lady in her church took humira and got lymphoma and died. I went to my next appt armed with all this info and practically begged him to put me back on steroids. I hate them and their side effects but at least one of the side effects of steroids is not death. He agreed and so here I am, armed with prednisone, canasa suppositories and nitroglycerin cream. That cream worked wonders on the fissure but still having UC issues. I’m afraid maybe he didn’t starts the steroids at a high enough dose (we went with 20 a day until i see him again next week). I’m afraid of higher dosage, I already feel moody, psychotic, and you know, all the other things that come along with steroids. I just yelled at my son. I never yell at my son, I feel terrible.

written by Lisa

submitted in the colitis venting area




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9 Responses to Losing It

  1. Tharisa March 14, 2013 at 11:38 am #

    So sorry to hear Lisa. I am a 38yr old mother of 3 and just experienced a major flare as well. I felt like I was going to die I was so sick. I have also tried most of the same meds that you mentioned above and they either did not work or only worked for a while. For this flare I was put on Prednisone for about a month and then finally gave in and agreed to try Remicade. I have/had all the same fears as you, but felt out of options. There was no way I could continue to live that sick. I noticed immediate improvement of my symptoms with the first 2 week Remicade infusion and continued improvement with the second infusion that is a 4 week infusion. I am due for 3rd infusion (my last induction dose) that will last 8 weeks on 3/20. I’m starting to have some colitis symptoms this week and I did gain several pounds since my first infusion, but Prednisone has the same effect.I’m going to go ahead with the 3rd infusion and see how it goes. It really did make most of my symptoms go away. I have not been this free of colitis in 10 years. Now if I can get the weight gain under control and not get lymphoma, I’ll be in great shape. I’m still nervous about taking this stuff, but I’m also happy a drug like this exists that can help me live a more normal life. I was thinking about not taking it again, but then this week as the medicine started to wear off and my symptoms started to return, I realized that was a bad idea. Good luck!!!!!!

  2. PeterNZ March 14, 2013 at 2:34 pm #

    Hang in there Lisa,
    I’m on the pred too and know how you feel.
    Some of these stressors are just beyond your control so try and just let ’em go.
    Tomorrow is another day.
    All the best,
    Peter

  3. bev March 14, 2013 at 3:37 pm #

    Hi,

    I, too, detest meds. I was on meds for 14 years straight…asacol mainly, in differing doses. Not only did it stop working, but it actually began to make me even sicker.

    All of the drugs seem to eventually stop helping. I think that the only way to REALLY manage UC is to find what works naturally, whether it be diet, probiotics, or a combination of both. There is some great success with extra virgin olive oil (you can read up on it on a thread on this very site by Graham), and L-glutamine. Vitamin D and other natural anti inflammatories also are successful.

    Not only that, but these natural things are not dangerous in the long term. I know that we all want to find a quick fix, but unfortunately, with that, comes risk.

    Cheers,
    Bev

  4. Graham from England
    graham lee March 15, 2013 at 7:40 am #

    Hi Lisa,

    Sounds like good advice to me Bev and thanks for the (Evoo) mention..I also believe we must maximise what we can do naturally to reduce the meds and their long term effects.

    Stress is a common factor it seems and I have only just accepted this notion. My life has been full of it and always thought I thrived on it, “last minute Lee” as my Dad always called me. Reckon I’m not the only one here..

    One theory is that when we are stressed the body thinks we are under some kind of attack and prepares for this by saving energy it would be using in the digestive system. This is ok for a short time but being constantly stressed and a resulting under performing digestive system makes sense to me. http://www.constipationexperts.co.uk/blog/2013/03/can-stress-cause-constipation.html
    Its only been a few days but I am actually enjoying preparing my body better for bed (eating at least 3hrs before and a herbal remedy to relax), therefore optimising my immune system to repair and reduce inflammation (over 8 hrs if poss). Crazy, well its something I have bought into and will work on, cant hurt can it? I have also found myself more relaxed during the day, I’m sure my body temperature is lower but its only been a few days.

    I also realise that during a flare we are far more sensitive to foods, carbonated drinks etc. Obvious probably but I had always eaten what I liked and have never had any doctor or consultant tell me otherwise, bloody shocking that is!

    So these are my 2 new prevention measures and the amazing (real) Extra virgin olive oil. The health benefits go on and on but I think the oleocanthal natural anti inflammatory is the biggest benefit without the negatives of other Nsaids.

    Yes Evoo is still working but I am determined to be 100% at my colonoscopy so I am not offered meds and can shout Evoo! It is UC war, be vigilant and good luck…

  5. Graham from England
    graham lee March 15, 2013 at 8:39 am #

    A nice read…http://drbenkim.com/articles-ulcerative-colitis-treatment.htm

  6. Tim March 15, 2013 at 9:07 am #

    Sorry …genius

  7. Graham from England
    graham lee March 15, 2013 at 9:51 am #

    You forgot “part time idiot”..I have seen that research and its good to see more mainstream publicity for a great natural solution. I think Dr Andrew Hart must have provoked most of the Evoo study’s, even though he put the benefits down to oleic acid and mentioned just “olive oil”. The results he uncovered were significant and the answers are still unfolding. It seems that Real Evoo and the polyphenol/oleocanthal are the main benefits, cant wait to learn more.

  8. Ellen March 16, 2013 at 8:50 pm #

    Hi, have you been resting?
    I tried to figure out whats important in the remission and keeping that way.
    For me, resting 8-9 hrs a day (going to bed early and getting up early), eating at the same time on schedule, eating unprocessed food, doing yoga or walking (not running, or weight lifting because it provokes hormones and not calming I found) are the key in maintaining remission.
    For jobs its hard, but somethings are out of my control. When a person loses a job, he/she can pick herself up and get another one. Worrying over things that would happen add more stress in life of UC person, and I found that it is not good for my health.
    Its hard to keep having UC, but when it comes to worst, its better to have a surgery I think. If you dont go for J-pouch, most people get cured by having permanent illiostomy, and no risk of pouchitis and one surgery just does it (I mean I dont want to relearn how to go to bathroom again…) There are some people on youtube having ostomy and they are very happy, perhaps you can check that out? I hope you feel better…

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