I have been MIA all over the internet for the past several months or more.  I had been on a depression medication, Celexa, which was giving me nightmares (ones I didn’t much enjoy), trouble sleeping and so, rather than speaking to my family doctor about it and getting something different, I just quit taking it. One thing is for sure.. my doctor told me right up front at the beginning of all this.. It’s not unusual at all to feel depressed when you have Crohn’s Disease.

Not a good idea.

After several months of progressively getting worse, I finally talked to doc about it.  He put me on something different (Effexor, which doesn’t have very many supporters if you search about it).  After about two weeks, he bumped up the amount I take.. I feel better now, but wouldn’t mind feeling a little bit better than I do.  I need to go see him soon and will talk to him about it then. Depression is no fun.

I notice a pattern with how I deal with things, and always see the pattern in hindsight, but when dealing with it at the time, I just can’t deal with it.  I knew last summer and fall I was depressed, but I kept thinking it would be better tomorrow and I’d call the doctor, but then didn’t feel better and wouldn’t. There was always some reason for me to put it off.  Not healthy, but at the time, I don’t know how to work around it.  Ah well, knowing the problem is half the battle, right?

As for my Crohn’s Disease, I started Humira and am feeling so much better.  I still get pain in a few different locations, and still use prescribed pain med to manage it – both my family doctor and my Digestive Specialist doc are fine with it.  What would I do without them (both of my doctors.. and yeah, the pain med too.. but my doctors are awesome)? I just don’t know.  Humira, used for both crohn’s and ulcerative colisit, is easy to do – self injection every other week with the pen (pen is called a self-injection pen or an auto injector – they are disposable, and Humira will provide a container for them for free).  As long as I put ice on the injection location both before to numb it and after to calm it, I do alright.  Sometimes it swells a bit, sometimes it bruises badly, sometimes it bleeds more than other times and sometimes it itches like crazy. GI doc gave me a cream to use for the itching, very helpful.

While everything is going well with me, my sister was just recently diagnosed with colitis. … sigh …

Edited to include:
I forget what search I did to come across this couple and their story about Ulcerative Colitis and surgery.. I got caught up in reading about Mark and Megan – while Mark is the one diagnosed with UC, it is very much a part of Megan’s life too.

They tell their story about Mark’s battle with UC, their choosing surgery and, the best part, they share pictures of things along the way.  Their story is amazing, their relationship true (honest, open), they deal with things in such a positive direct manner.. If nothing else, at least skim through the few different links of their journey, skim the story and see the pics – nothing off-putting. (Since my dad had to have an ostomy this past summer – reversed in fall – it was nice to see such a direct and open story about Megan and Mark. And to Megan and Mark.. if you happen upon this link, know I through kudos to you both!)  UC Story w pics.

I’m making the switch from Remicade to Humira for my crohn’s disease.

The muscle aches, which we attributed to an allergic reaction to Remicade, went away mostly.  However, after my 3rd Remicade treatment, the achey joints returned (maybe some slight muscle pain, but mostly just joints).  It was my elbows, fingers and wrists, ankles and knees.  For the most part, after about 5 weeks, all that remains of the aches are one elbow and both knees – consistently anyway.

Doctor today seemed like he was thinking about suggesting another round of Remicade… but then just said, lets just do Humira, I think that’s what we should do… Are you ok with it?  Oh, yes.  Definitely ok with it.  I certainly don’t want to feel these aches and pains… not feeling confident to carry laundry up from the basement for fear my knees will give out.. or carrying a couple bags of groceries makes my arms feel like they’ll fall off.. while I am happy to not have the abdominal pain, I didn’t plan to trade it for other pain.

The tail bone pain I was feeling before the holidays is completely gone. I actually wouldn’t have given it any thought, except he asked about it today.  So, I’m assuming the abscess was small and insignificant enough it just went away.

So, humira.  I will go to the doctors office and a nurse will show me how to do it.. from then, I will adminster the shots myself at home.  They assured me it’s easy to do – but I also don’t want to mess it up, as it’s so expensive.  No pressure.  But really, I think giving myself a shot will be a cake walk compared to going and sitting for hours at the hospital while they give me an iv of remicade.. yeah, I really don’t mind the switch.

Now, keeping fingers crossed Doc can push the change through my insurance.

I had my second remicade treatment last week.

The morning of my doctors appointment, we had so much snow and ice, I called and cancelled the appointment – asked the nurse to just make an appointment for the remicade treatment at the hospital as planned.  I got a call back saying I *had* to see the doctor before I could get the remicade.  Since he was going out of town for a week or more, I had to make it in.

Thanks to my husband for getting the ice off my car and warming it up, I was able to make it in to see the doctor.

All was fine and the remicade appointment was scheduled.  It all went smoothly, if not just a little slowly.  I don’t know if it was late in the day that made it seem to take so long, or that I’d had a cup of coffee before the appointment and I was continually unplugging the IV, uncuffing the blood pressure cuff and dragging the pole to bathroom to go… again.  But regardless of the reason, the few hours I was there seemed to take forever.

Luckily, I had four episodes of Weeds, Season 3 on my ipod and I laughed through each one.  I love that show.

So, I know, what about Remicade.. well, so far, it seems to be working for me.  The few days I had before the treatment I started feeling really crampy, painfully so.  Wake me up through the night painful.  The day after the treatment, I woke up way too early, stayed up the whole day, felt great and come night, was too jazzed to sleep… wasn’t liking that much, but I don’t think it was the medication directly.

Anyway, status is… remicade is good.   I am good.  I am feeling hopeful.

Last Friday, I started Remicade in hopes of it working to keep my crohn’s disease under control. I am also continuing to take my azathioprine (imuran) daily.

I had been feeling so totally crummy.  It’s like I’d  been drinking a “lethargic” potion.. my body was so tired, my arms and legs so heavy – like lead.  To make myself get out of bed, or off the couch, required every ounce of willpower I had in me.

But in the last week, since having had my first remicade treatment, I’m slowly starting to feel more normal – as if I even know what normal may feel like any more.  I am still having some crampy, even sharp pains in my lower abdomen.. but overall, I am feeling much less pain than a month ago.

I’ve been on Flagyl and Cipro for almost 30 days now (for a small abscess and a flare)… so my feeling better could be attributed to the antibiotics… I’m hoping that’s not just it though. I really just want this to work.

How did the Remicade Treatment go?

When I was looking for information about what they do, I couldn’t find much, other than it was given via IV. Here’s how things went for me…

I had mine done at the hospital. Some people get their treatment at the doctors office, but apparently, some insurance require it to be done at the hospital.

When I got there, I wasn’t sure where to go, so I asked at the information desk. A really nice volunteer took me up. She even made sure I was in the correct place before leaving – just in case I wasn’t where I was suppose to be.

I had a room to myself, with a pretty view of the woods behind the hospital. There was a bed, which I considered snuggling into right away, but instead I opted for the not-totally-comfortable recliner and kicked off my boots.

The nurse explained a few things – that it would done via IV, they would start it very slowly and check it every 15 minutes, slowly upping the speed until it was going all the way. She said they’d found it to cause less issues starting slower (as in, less irritation, less allergic reaction). When I get there, they place a call for the remicade medication to the pharmacy. It takes about 45 minutes for it to get processed and brought up to the room. Once there, they hook it up to an iv – which they started just before it got there, as well as a blood pressure cuff. They also put a steroid (similar to prednisone) in the iv, which also helps to keep down any reactions.

I asked for a blanket (she pulled from the warmer, yum!) and snuggled in with a book – Mortal Fear, by Greg Iles (I haven’t got my Amazon Kindle yet, but when I do, oh boy!)

The whole visit took about 4 hours, but we were slow getting things started. She said it takes about 2-2:30 hours for the iv remicade to go in (I didn’t bother to check the clock, but will next time) – so the rest is just getting things ready to start. Once it was done, it was very quick getting out of there.

No reactions, no issues at all, other than the nasty headache, which lasted the rest of the night.

My next appointment for remicade will likely be Jan 30. It’s suppose to be given at 0, 2 & 6 weeks then moving to every 8 weeks – though I think my cousin gets his 3 months apart now (he has colitis, so maybe it’s a different timeline.. not sure).

I had my doctors appointment last week – the day after our Ike Wind Storm here in Dayton… Crazy days.

Anyway, Dr wants to have me to have another CT scan to see what’s going on with the absess I had.  If it’s still there, she’ll put me back on antibiotics.  Plush I am to back down off the prednisone, coming down 5 mg a week.  I started at 40 and dropped to 30 the week before I went to the appointment. So, I’m (rather quickly, I think) coming off the prednisone and I worry it’s too fast.

She (Dr) said we have to show what we are doing isn’t working before we can move forward to something else.  It didn’t dawn on me until a few days later (because of the lack of electricity and my mind was certainly on other things) that she is most surely expecting me to get “sick” again so we can prove to insurance we need to move on to Remicaide or something else.

I’m feeling pretty bummed about that – the thought of feeling sick again.. Right about the time the holidays are getting good, I expect to be dealing with more pain.  Yeah, sounds fun.  But I guess we do what we need to in order to get better.

by Jahir Ahmed

Recent research has revealed that a daily supplement of probiotics can help to relieve the symptoms of Crohn’s disease in sufferers.

Crohn’s disease, an inflammatory bowel disease, can cause painful discomfort for people who suffer, and is characterized by an imbalance of bacteria in the gut. Whilst antibiotics can help to rid the body of offending bacteria, probiotics offer a natural way to balance bacteria in the digestive tract, replenishing the body with ‘good bacteria’.

Not only does the friendly bacteria in probiotics help to balance the gut flora and fight away any yeast or bacterial infections, for those who are dairy intolerant or are not keen on the many probiotic drinks on the market, a probiotic supplement is an effective way of maintaining a healthy balance of bacteria in the body. These remarkable tiny organisms have been found to be play a key role in the treatment and prevention of many diseases by neutralising the effects of offending bacteria.

In a recent study, two thirds of people taking a prebiotic and probiotic supplement experienced complete remission of the disease, strongly suggesting the effectiveness of a combination pre- and pro-biotic supplement in relieving people who suffer from Crohn’s Disease.

ABOUT THE AUTHOR:
Jahir Ahmed is an Internet marketer, publisher and copywriter, and have been working for Simply Supplements as an online marketer and copywriter for last three years. He is particularly interested in diet and nutrition and has written many articles on health issues and nutrition. His articles are published weekly which can be found in popular article directories.

I’ve been meaning to post this.. if for no other reason than to have it for my own records down the road.  As I’m sure things will change soon since I’m still having issues.

Current Daily (long-term) Medication:

Asacol® (mesalamine)
- affects a substance in the body that causes inflammation
- 2 ?mg pills – 3 times a day

Azathioprine (Imuran)
- used to inhibit the immune system
- 75mg alternating the next day with 100mg

Aciphex (rabeprazole)
- treat gastroesophageal reflux disease
- 20mg – 2 times a day

Prednisone
- synthetic corticosteroid
- 40mg (though this should change quickly, I hope!)

Antibiotics

Flagyl – 500mg @ 3 times a day (14 day cycle this time)
Cipro – 500mg @ 2 times a day (14 day cycle this time)

Other medications I take, either daily or as needed:

Claritin – generic, for allergies – this also helps my sinus headaches which I call “sinus migraines”.
Yaz – I have 4 wonderful children, love them dearly.. do *not* want any more.
Vicodin (acetaminophen and hydrocodone) – no longer strong enough
Norco – equivalent to 2 vicodin without the extra acetaminophen – 1 pill every 4 hours as needed
Percocet – 1 pill every 4 hours as needed
Antidiarrheal – as needed, according to package instructions.

I left the hospital early on Tuesday, against their wishes… and immediately got in contact with my Doctor.

I spoke with the assistant on Tuesday evening and then again on Wednesday afternoon.  This morning (thursday) my doctor called to tell me I needed to come in so she could show me how to care for the catheter.  But since I already knew what do to and had been doing it all.. she had the assistant call and schedule another ct scan.

This time, they want to see how much the abscess has gone down.  For her to order the catheter to be removed, the abscess must close off.  This is to help prevent re-infection.  It’s also possible the catheter will need to be moved, if part of it hasn’t drained.

I’m actually glad she called and took a few minutes to explain things… I was reaching a point I was tempted to take the catheter out myself.  But understanding why it needs to stay in place for as long as it does, and knowing if it did not heal I’d have to do it all again.. well.. that’s enough for me to be patient about this.

And as mad as I was at the hospital, I am actually going back to them to have this follow up done.  I will be taking my own pain medication with me, for sure and won’t bother to ask for any if I am in pain.

So far, since having the catheter in place, I feel so much better.  I don’t have pain when I walk, sit, or when I’m bumped.  Of course, the catheter placement is uncomfortable and I have been taking percocet to relieve it.  But it’s a different type of pain.

If it’s not removed tomorrow.. we’ll make arrangments for next week.  I’m hoping for tomorrow, but not holding my breath.