Living with Crohn’s Disease: The Combat Within: The Present Situation (Post #8)

I think I’ll take a break in my chronological story of my Crohn’s history since I’ve had some trouble that I feel I should talk about.  It started after Christmas.  I got what I think was the H1N1 flu.  I was laid up in bed for about two weeks with that.  However, some of the meds I have been on have caused me problems.  I have a Crohn’s flare up at the present but don’t feel it’s as bad as I thought.  I think it has something to do with the medications.  Not only am I on Remicade  which is an immune suppressant to work on my Crohn’s disease since nothing else has ever worked–prednisone is the only thing that has ever done anything but it doesn’t throw me into remission, it just gives me the nasty side effects that I have mentioned before in my other posts.  I’ve tried methotrexate which works for some and is a chemotherapeutic agent, but it caused my liver to react badly (as noticed by liver enzyme tests) so I had to stop it immediately.  I have been on Remicade for about 5 years now.  I take immuran which is another immune suppressant (it’s also given to those with organ transplants to help prevent rejection) all in attempt to keep my immune response to Crohn’s disease to a low-level.  I have to take this with the Remicade so that the remicade will keep working, so far it has.  However, I have other problems from the loss of my ileocecal valve (the valve which separates the small intestine from your large intestine).  One thing the valve does (it’s a one way valve “down”) is to help prevent the flow of colonic bacteria into the small intestine, some of the colonic bacteria isn’t “good” and the small intestine is not where bad bacteria is supposed to be.  I also take alternating antibiotics for bacterial overgrowth which is a result from the loss of the valve and also getting caught in wet,dark, small places such as adhesion areas,and strictured areas.  The antibiotics I alternate with are Ciprofloxacin–which is a broad spectrum antibiotic, meaning it will take care of gram + and gram – bacteria; metronidazole (also known as flagyl) which will take care of gram – bacteria and also bacteria known as Clostridium difficile which results when the antibiotics you take cause overgrowth of bad bacteria by killing off all the good bacteria; xifaxan, which is an antibiotic that is not absorbed into your entire system, just your gut (which is always a good thing, less side effects from the drugs);   I sometimes take tetracycline; I also try to alternate with Florastor which is an over the counter probiotic recommended by my doctor instead of acidophilus to recover from antibiotics.  I really like the Florastor, it helps a lot.   So, I alternate with all these antibiotics, it’s not easy determining which one to take and when to take it but when I start feeling the diarrhea getting much worse as well as the cramps, I switch.   I feel this is what happened to me over the last two weeks.  Not only have I been having a small flare but the bacterial overgrowth took on a major part.

I had just seen the doctor with no real advice given except to try the xifaxan and flagyl again.  I had been on Ciprofloxacin and Flagyl as directed by my doctor for about a month since nothing was working and I felt my Crohn’s was worsening.  I felt the two of these caused a bacterial overgrowth.  One problem, since I had the flu, I felt as though it ended up in pneumonia as it usually does (since I also have asthma)so I stayed on the Cipro (Ciprofloxacin) and stopped the flagyl.  I stayed on the Cipro for at least 7  days after the flu.  This layed me up for another week since I had massive diarrhea, all liquid.  I couldn’t eat, since whatever I ate or drank came boomeranging out of me as soon as I took it in.  I stayed with the fluids though.  At one point I was having diarrhea 30 times/day.  I had to wear “diapers” since I was incontinent.  Embarrassing to admit but I never know when I’m going to have an accident.  It bothered me at first but I have no problem with it now.  Now, the people I know, next time I see you, don’t go looking to see if I have a diaper on.LOL   Anyhow, to get back to these past weeks.  Christmas was great, things didn’t get bad until around New Year’s I think (who keeps track).  All I know, is I’m no longer taking the Cipro, I am taking the xifaxan and Florastor which seem to be working well.  I’m down to approx. 8 times/ day and haven’t had an accident in a few days.  So, I’m getting better.  I’m eating a light diet, like eggs and toast and doing well—-it’s not running through me anymore.

I’m also exercising again.  I’m doing the Wii Fit and we now have the Wii Fit Plus which I have not yet tried.  My family also joined Planet Fitness with their $1.00 special registration for the New Year, and their $10.00/month fee.  I’m talking about money here because this disease is not cheap.  God help those who don’t have health insurance.  Remicade is in the area of 12,000-15,dollars a treatment which I get at short stay at the hospital every 8 weeks.  Thanks God its covered.  Even though I have ins coverage the deductible is high for this insurance as well as the co-pays but I think it’s the way of all health ins now.  My co-pays are approx. $300./month and that doesn’t include things like over the counter meds like Florastor and constant need for adult diapers.  My dental bills are also enormous –my teeth are also so bad because of my disease– the dentist says its related to all the acid production (I also take something for that twice/day–nexium).  Even the teeth I have gotten capped in the past  are getting cavities on the bottom, and I’m using a special fluoride tooth paste and prescription rinse for this.

Now that I’m back on the path to recovery, I shall get back into quilting, already said working out and cooking for my family.  I was so slacking when I was sick, I was too sick to make supper.  But my husband and daughter have been very supportive of me.  I’m so lucky to have a family like this.  I’m back!  I “grinned and bared” it (haha) and now its on to the next day of my life.  Remember don’t look back unless its to look back at things that might have helped you during your down time. Live in the present, if all you can do is get through it then do it, “and this too shall pass”, and live day-to-day!  Hope you all had a happy New Year and have set some great goals.    I know I have!  I’ll be here next week!

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Tags: Crohn's Disease