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Good Times – I Copped The Mother Load

Introduction:

Hi, I am a 52 year old female, divorced with three grown children. My daughter still lives with me as she has Charcot Marie Tooth and requires regular care and assistance throughout the day. I completed a teaching degree in 2004 and began what I thought was going to be lucrative teaching career. Unbeknownst to me, UC had other ideas. I have to say though, I have recently acknowledged that I have never handled stress well. My heart beats fast, I stay awake at night, I feel turbulent and think the world is against me. Luckily now older and wiser, things don’t bother me so much and I have learned to protect myself. I have also acquired a quick sense of humour and spend my time laughing instead of crying. I used to feel very hard done by, misunderstood and crappy about myself. However, now that I have Ulcerative Colitis things are looking up. I jest!!!! I do think it’s karma that I have this embarrassing disease and I am laughing as I write this. All my 5 siblings have bowel problems but I copped the mother load. Lol. That’s what you get for being the eldest!

siblings with bowel problems

My Symptoms:

Currently, not working except for caring for my disabled daughter fulltime. Much more relaxed but still have to watch what I eat like a hawke. Usually have to make a bee line for loo 30 mins after eating or drinking. Diarrheoa, blood and whatever died back there are a constant in my life. Have decided to remove my profile from the singles website. I cannot lie or sleep on my left side at all as this will necessitate a leap in one bound from the bed, forget the slippers, just get to the bathroom! I spend quite alot of time in the bathroom at night and have gotten through several books lately as I have found it breaks the boredom and as I am waiting for the contractions to subside I massage my abdomen to achieve the best evacuation results. I think that’s the right word.

My Story:

I began having symptoms in 2007 when I started work at a new job. The unethical nature of the business bothered me so much I couldn’t sleep, my stress levels soared and I left after 6 months. My symptoms disappeared to the point that when I finally had my appt with the gastro doc I felt like a fraud. I started relief teaching at primary schools and contracted chicken pox, which I had had when I was 8 yrs old. Then I won a perm. teaching job 2 months later. Three wks into that my symptoms returned, clearly triggered by stress. You don’t want to teach with UC. I had stomach pain all day. Then for some reason, as soon as the last student had left the building I would have to surreptitiously gallop toward the only loo in the school, way down yonder. Sometimes I didn’t make it and resorted to keeping a change of clothing and wet wipes in my vehicle. I ate very little until teatime so that my stampedes to the loo at the far end of the school were minimized. Finally had colonoscopy. Diagnosed UC. Put on Pentasa and Prednisone. Then tried Azithioprine for 18 mths at which point my symptoms were pretty bad so learned to inject myself in the abdomen with methotrexate which helped for a time. While on the Methotrexate my arthritis symptoms disappeared but the UC was untouched. Had a crappy Christmas while doc and specialist were on holiday. Am still on Pentasa and have Infliximab infusions 2 monthly. Prednisone is a quik fix and you feel great but it stopped me from sleeping. Plays havoc with yr adrenal system when coming off so I don’t want any more of that unless I’m dying and then what will be the point?

Where I’d like to be in 1 year:

Well, It’s not really looking like I will find that funny forgiving man to spend the rest of my life with so let me think – I currently have my house on the market to pay my debts so I am looking at a new adventure that may include a different town where the cost of living may be a little less. I would like to be able to hold down a part time job, enjoy my friends and family, take control of my life so that UC is not controlling me. I dabble in acrylic painting. I would like to spend more time with that as it relaxes me and I would love to travel to Italy for inspiration or the south of France. I doubt that will be in my 1 year plan but I hope to reach that goal as soon as.

Colitis Medications:

Infliximab seems to have done some good. The recent colonoscopy showed that at least half of my bowel is now looking normal. Back in 2008, my diagnosis was pan colitis, the bowel 100 percent affected.
We all know that sometimes Prednisone is a necessary evil but it masks symptoms and really is not good for you in the long term.

submitted in the colitis venting area




4 Responses to Good Times – I Copped The Mother Load

  1. Richele
    Richele October 2, 2012 at 12:13 pm #

    Hi Coralie!
    It still blows my mind when I read stories that are so similar to my own. I just shared my story a few days ago, if you care to read it ;)
    Sleeping on the left side sucks…makes my run to the potty 9 times outta 10. I miss the freedom of sleeping however I want. Sitting on the toilet, waiting for spasms to subside is so annoying! I just wanna get back in bed and sleep for an hour, before I’m back on the pot again!! LOL I’ve found that abdominal massage works for me as well…also bending my torso to the left to smoosh the descending colon…has the same effect as sleeping on the left. It helps to get things going when you’re ‘stuck in the loo’ forever! Hey, can you suggest any good books? hahaha!
    I love your upbeat outlook on all of this. Makes the day go by a bit easier.
    Wishing you the best..to you and your daughter :)
    Bye!
    Richele

    • Coralie October 2, 2012 at 2:46 pm #

      Hi Richelle

      Thanks for your comments and for sharing your story. If you are serious about the books, lol, yes I can recommend some goodies! I just realised the other day that I have read so many and can’t remember what they were called so have taken to keeping a notebook of title and author. Ha ha. I am finding it a little difficult to access a reply button so that I can reply to fellow UCers and this was the only way I could reply to you, finding your note to me.
      Anyway, about the periods, being 52 yrs old I found that my periods were getting heavier, coupled with the fact that I was bleeding from the bowel as well has kept my ferriten levels at 6 for a couple of years. Needless to say, I am often ready for bed at lunchtime due to exhaustion. I think it’s partly why I have taken up reading. Only my eyes get tired. Lol Lol. I was referred to a gaenocologist who says periods add to our inflammation so he installed a Mirena (look it up on the internet) into my uterus. It releases a tiny amount of hormone with that idea that eventually my periods will stop pretty soon. It was done in August. I pretty much had non stop spotting or bleeding for about 6 or 7 weeks. Last week it stopped and hopefully that is it. The specialist believes it will reduce inflammation in other areas of my body as well. When yuou think about it, it makes sense. Periods can be pretty debilitating what with mood swings, pain, throbbing and out of controlness. So you might want to think about that further down the track. Who would have thought that there was a condition like this waiting for us, eh? Throughout your whole life, have you ever known of a disease that makes grownups lose control of their bowel contents, apart from tummy bugs? and food poisoning? I bet you those thugs out there who are robbing, murdering, raping and pillaging don’t get anything like this. Should we consider a career change? Definitely not!!!!! I have heard that the damage is done to our colons long before we get wind of it. Oh, I crack myself up. (Rolling about on the floor spilling my coffee) Well, my daughter is waiting for me to take her shopping and I haven’t had a shower yet! Got sidetracked talking to my new homies! We started playing table tennis a couple of months ago. It’s about the only sport I can indulge in. Toilets are handy and the people are friendly. So we are off to that this afternoon. Nice sharing with you.
      Coralie

  2. Bev October 2, 2012 at 5:50 pm #

    What a ultra cool and wonderful person you are Coralie!! Welcome to the site. I can’t wait to read more of your posts, should you post more.

    It is good to hear that half of your colon now looks normal. I have pancolitis too, and am having a routine colonoscopy in November. I am in remission at the moment, and I am looking forward to the same kind of news about my colon! Here’s to us…I’m crossing my fingers!

    Cheers,
    Bev:)

  3. Freda Jones January 8, 2016 at 7:21 pm #

    Im so happy ive Open this page To read some of your comment.UC is pretty bad. Im 60 years old a grandmother even a great grandmother And no one in My family really knows what I have ..I lost about 40 pounds In less than 6 months My body size is kind of painful to me I used to be so nice and sexy and now I feel like my legs are skinny my arms are skinny So I don’t go out in public much I don’t accept dinner dates because I would have to Run to the restroom Which would be embarrassing So to say the least I’m home everyday Laying in bed watching TV Because I know if I go out there is a great opportunity That I’ll have to find a restroom It happens so often all night long with the diarrhea ,bloody stool Im Really tired of this

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