Imuran (azathioprine)

Here's some reading material on the new drug that my Doctor has put me on.  I highlighted a few areas of concern that I have. I have been fighting taking this medication for almost a year now but I just want to be healthy and live a "normal" life like everyone else.  I don't know what the future holds and this isn't the direction that I wanted to go... but I'm trusting that there is a reason for all of this and that everything I am going through has a purpose.

Warnings:

Azathioprine may increase your risk of developing certain types of cancer, especially skin cancer and lymphoma (cancer that begins in the cells that fight infection). If you have had a kidney transplant, there may be a higher risk that you will develop cancer even if you do not take azathioprine. Tell your doctor if you have or have ever had cancer and if you are taking or have ever taken alkylating agents such as chlorambucil (Leukeran), cyclophosphamide (Cytoxan), or melphalan (Alkeran) for cancer. To decrease the risk that you will develop skin cancer, avoid prolonged or unnecessary exposure to sunlight and wear protective clothing, sunglasses, and sunscreen. Tell your doctor immediately if you notice any changes in your skin or any lumps or masses anywhere in your body.

Some teenage and young adult males who took azathioprine alone or with another medication called a tumor necrosis factor (TNF) blocker to treat Crohn's disease (a condition in which the body attacks the lining of the digestive tract causing pain, diarrhea, weight loss, and fever) or ulcerative colitis (condition in which sores develop in the intestines causing pain and diarrhea) developed hepatosplenic T-cell lymphoma (HSTCL). HSTCL is a very serious type of cancer that often causes death within a short period of time. Azathioprine has not been approved by the Food and Drug Administration (FDA) for the treatment of Crohn's disease or ulcerative colitis, but doctors may sometimes prescribe azathioprine to treat these conditions. If you develop any of these symptoms during your treatment, call your doctor immediately: stomach pain; fever; unexplained weight loss; night sweats or easy bruising or bleeding.

Azathioprine can cause a decrease in the number of blood cells in your bone marrow, which may cause serious or life-threatening infections. The risk that the number of blood cells that you have will decrease is highest if you have a genetic (inherited) risk factor. Your doctor may order a test to see if you have this risk factor before or during your treatment. Taking certain medications may also increase the risk that your blood cells will decrease, so tell your doctor if you are taking any of the following: angiotensin converting enzyme (ACE) inhibitors such as benazepril (Lotensin), captopril, enalapril (Vasotec), fosinopril, lisinopril (Prinivil, Zestril), moexipril (Univasc), perindopril (Aceon), quinapril (Accupril), Ramipril (Altace), or trandolapril (Mavik); trimethoprim and sulfamethoxazole (Bactrim, Septra); and ribavirin (Copegus, Rebetol, Virazole). If you experience any of the following symptoms, call your doctor immediately: unusual bleeding or bruising; excessive tiredness; pale skin; headache; confusion; dizziness; fast heartbeat; difficulty sleeping; weakness; shortness of breath; and sore throat, fever, chills, and other signs of infection. Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this medication.

 What special precautions should I follow?

Before taking azathioprine,

• tell your doctor and pharmacist if you are allergic to azathioprine, any other medications, or any of the ingredients in azathioprine tablets. Ask your doctor or pharmacist for a list of the ingredients.
• tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention the medications mentioned in the IMPORTANT WARNING section and any of the following: allopurinol (Zyloprim); aminosalicylates such as mesalamine (Apriso, Asacol, Pentasa, others), olsalazine (Dipentum), and sulfasalazine (Azulfidine); and anticoagulants ('blood thinners') such as warfarin (Coumadin). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
• tell your doctor if you have any type of infection, or if you have or have ever had kidney disease.
• tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. You should use birth control to be sure you or your partner will not become pregnant while you are taking this medication. Call your doctor if you or your partner become pregnant while you are taking azathioprine. Azathioprine may harm the fetus.
• if you are having surgery, including dental surgery, tell the doctor or dentist that you are taking azathioprine.
• do not have any vaccinations during or after your treatment without talking to your doctor.
 

What side effects can this medication cause?

Azathioprine may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• nausea
• vomiting
• diarrhea

Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately.

• rash
• fever
• weakness
• muscle pain

Azathioprine or 6‐mercaptopurine for maintenance of remission in Crohn's disease

 

Azathioprine (1.0 to 2.5 mg/kg/day) used among patients with non‐active Crohn's disease is effective for reducing the risk of disease recurrence over a 6 month to 2 year period. Higher doses of azathioprine (2.5 mg/kg/day) are more effective than lower doses (1.0 or 2.0 mg/kg/day) for preventing disease recurrence. There is also evidence that azathioprine may reduce the need for steroid treatment which could help reduce steroid related side effects.  Azathioprine appears to be more effective than 6‐mercaptopurine but this may be due to the relatively low dose of 6‐mercaptopurine (50 mg/day) used in the one study assessing this drug.  The long‐term effectiveness of azathioprine and 6‐mercaptopurine is unclear due to the short duration of the studies (6 months to 2 years). Azathioprine and 6‐mercaptopurine appear to be slow acting drugs. They are associated with some uncommon but serious side effects. These include suppression of the body's ability to produce white blood cells (which fight infection) and platelets (which allow blood clotting to occur), inflammation of the pancreas and an increased risk of lymphoma. Patients who may benefit from this therapy include those whose Crohn's disease is chronically active or flares frequently. Azathioprine or 6‐mercaptopurine may also benefit patients who are dependent on steroids but have experienced steroid side effects, or for whom steroids no longer work. The choice to use azathioprine or 6‐mercaptopurine should be made after careful consideration of the risks and benefits of using these drugs.

Has It Already Been a Year?!?!

It's crazy to think that it's been over a year since my last post!!!  There are SO many changes in my life since my last post that I'll try and sum it up as quickly as possible so I can move on to life as I know it today... there still so much going on!

2011

* Had setons removed because my body seemed to be healing.
* Aug 15th, I was admitted to the hospital for yet another abscess drainage and spent my mother's birthday having surgery.  As a result, we stopped the Humira injections because they were obviously not working to stop the fistulas and abscesses.
* Returned to the hospital again on October 25th and spent my sister's birthday having surgery for ANOTHER fistula and abscess drainage.
* Less than a month later on November 16th, I was back for my 3rd surgery in 4 months and my fourth for 2011... and again for the same reasons.

I returned back to work after each surgery as soon as I thought I could... but definitely didn't take the time that I should have.  Call it being stubborn, a Taurus, my mother's child... I am all of the aforementioned. I mostly did it because I felt like I was a burden to my co-workers.  My body was exhausted and was not getting enough time to heal in between attacks even without returning to work. It was a ROUGH and EMOTIONAL time for me!!!

My husband, doctors, and I decided that we should give the Humira another try but decided that this time we would change my injections to once a week instead of two injections every two weeks.  Same amount of medication but more frequent injections.

2012

* January/February - Said "See you later" to some of my best friends from work due to position eliminations, retirements, and new jobs.  The hubby also moved 3 hours away from me to take a new job.
* March - Humira seemed to stop working as well again.  By the end of the month I was having full blown reactions to the injections (it looked as if baseballs were trying to come out of my skin!!!).  That was the end of my Humira injections.
* April - Started the month off right by taking a week off to spend up north with my husband, celebrating our 3rd wedding anniversary and 14 years of being together.  Much needed!!! The day before I returned to work we started the loading doses for Remicade and I started packing to move out of our apartment to parts unknown.  By the end of the month it was clear that I needed to focus on myself and be close to my husband.  The day that I decided to give my notice, I was actually called into the office to be told that my position was eliminated.  That night I turned in my keys to our apartment and closed the chapter of our lives in Vancouver.
* May - Moved 3 hours away from my family to join my husband in the 2 family home he was renting with his brother and his family but returning every few weeks for my iron infusions and Remicade doses.
* June - Was blessed with the birth of a new nephew but also lost my grandmother to cancer.  Her passing was one of the hardest things that I have ever had to endure... even through my Crohn's battles.  My grandfather told me at her graveside service that she left me all of her strength to help me get through this and trust me, when I am down, I remember those words!!!
* July - Enjoying life but my health is not getting better.  Spent most of the month in A LOT of pain.  Finished my loading doses for the Remicade but already not seeing the results that we'd hoped for.

And here we are all the way to August...  I welcomed another nephew, this one from my own sister :)  Also, visited my GI doctor who agreed that our results are not what she'd hoped for as well and would like to run tests to see if I have enough Remicade running through my system.  She also started me on another medication called Imuran along with the Remicade to see if we can hit this harder.  I took my first dose tonight... but that's a whole other post that I'll have to save for tomorrow :)

Blessed Beyond Measure

Getting up this morning I didn't particularly feel as if today was going to be a good day.  It's been a struggle for the past month to stay positive as I feel like I've got attacks coming from all sides.  Peace has been hard for me to find and the places that I usually ran to felt so far away.  I've felt secluded and unable to share what's going on with me because I don't want to remind people that I'm the "sick" one (as I heard myself being called by someone this month) or to become a topic of conversation in one of the little gossip circles around me that I want absolutely nothing to do with (I'd rather not know what's being said behind my back as is).  To put it simply, I'm drained.  I'd taken a few extra days off last week to clear my head but my plans fell through and I ended up stuck exactly where I was trying to get away from. By Sunday night I thought I was going to lose it... mentally or physically, whatever "flew off the handle" first.  All day Monday, I started planning my escape even if for no other reason that to bring myself sanity. 

Then it hit me... that first sense of peace. 

It wasn't the heavens opening up and it may sound silly to someone else but it was my first little bit of the healing that I so desperately needed.  I was standing in the kitchen after just getting home from waiting in my car for over two hours for my husband to get out of a meeting that should have been over two hours prior (while my groceries were sitting in the backseat).  The meeting didn't go very well (something that I'd been praying for different results for a long time) so needless to say it wasn't a fun car ride home.  Anyway, like I said, I was standing in the kitchen trying to get dinner done as quickly as possible just as I do every night in between the short few hours after I get home from work and my husband goes to bed.  Nothing out of the ordinary, the same job I do every night because according to someone, like it or not, it's my job.  Then the peace... my husband walks into the kitchen and says, "thanks for coming to get me today and for making dinner," then leans down and kisses me.  It wasn't much but it was exactly what I needed to hear at that moment.  Those simple words stopped me in my tracks and brought tears to my eyes.  I felt loved... the greatest of all gifts.

Today came the second blessing.  Like I said in the beginning.  I woke up this morning a little sassy.  There were still a lot of things weighing on me.  Yesterday was NOT a good day and I'd driven myself to pure silliness last night just to make it through.  Not things that I can go into because they are not my stories to share but all hurt me the same as if they were my own.  With that being said, I had a doctor's appointment this afternoon and due to my insanity lately, I hadn't gotten my blood drawn.  There was the issue of time but also that fact that I had two doctors requiring the same tests and then two different ones but from different clinics so I didn't know how I was going to manage to accomplish this without having to pay for one set out of pocket because of the duplicate test so I decided to just wait until I could figure it out.  Normally not such a big deal but today's appointment was with my hematologist... the blood doctor ;)  But Dr. L is a blessing on her own.  I wish she could be my doctor for everything.  She walks in the room today and asks me how I'm doing and I blurt out, "I didn't get my blood drawn."  She laughs and says, "Is that your big confession?"  Did I mention that I love her?!?!  Any other doctor in her profession would say, well what's the point of this appointment if I don't have blood to look at... but not Dr L.  She sits down and says, "now how are you really doing?"  This woman does not ask just to be nice, she expects me to tell her.  So I do.  All of the things that I have been holding back from everyone else in my life because she knows and understands what this horrible disease is doing to me on the inside and how all of the things on the outside truly make it worse.  She passes no judgement (she also counsels cancer patients after work and has told me that I'm welcome any time) because she knows that I am not looking for sympathy or to have my feelings held against me.  Then she tells me even though I'm not sure that the Humira is actually working that I look healthy for the first time in a long time and she's not worried that I'm going to collapse on her.  It means more than I can express and it gives me hope.  It's doctors like her that make living with a chronic illness bearable!!!

 Peace and hope... what more could one ask for :)  But wait, there's more!!!

Blessing #3 came this evening when I saw my husband walk through the door.  He was carrying 2 new sets of tools that he won today at work.  He was happy, I could tell, and that in itself is an unusual sight when work is involved.  As he sets down the tools he says, "I got a call from X today."  I immediately stop and give him my full attention knowing that this conversation could go only one of two ways... especially after the not so good meeting from Monday.  But as I look up, I see that my husband has a huge smile on his face and I know what he's going to say but I let him tell me anyway.  "Starting Monday I'm finally going to be a Journeyman,"  is all he says.  I'm still speechless, it's what I have been praying about for the last 2 years.  We don't know how it happened because this guy has been the #1 person stopping this from happening this entire time but it's finally happening.  I couldn't be more happy for him.  I give him double high-fives and a huge hug.  "So today's been a good day," I say to him.  "Today has been a great day," he replies.  That statement alone is almost another blessing in itself.

Peace, hope, and security.  What can I say, I'm blessed beyond measure!!!  In our darkest hour we learn that we are never forgotten, never forsaken, never alone. Take that grain of sand no matter how small and run with it, nurture it, watch it become beautiful again.

Well that's it for me tonight... it's injection time!!!

An Update Over Due

Can't believe it's almost been two months since my last post?!?!  What can I say, I'm a work in progress!!!  There's been so many times that I have sat down to update but most times I log on just to turn around and log back off because I'm not quite sure what to write.  It's not that I don't have a lot to say but I'm definitely one that likes to look towards the positive and to be honest... I'm just not feeling it.

Let's start from the beginning... I started Humira on April 14th. I do not want to go into the details (the main reason this post took so long) but let's just say those first 4 shots at the doctor's office were unnerving.  I thought that I was there for teaching and she would show me how for the first 6 shots (4 that day and 2, two weeks later) but after the first shot, it was all me. Ugh... I'm getting "butterflies" in my stomach just thinking about it again.  The injections hurt!!!  It's not just the shot but the medication itself hurts going into my body.  Not sure what I expected but it definitely wasn't that.  The nurse and I decided that maybe the hubby should do my injections for me going forward just so I wouldn't have to deal with psyching myself out and we could just get it over with.  Ever heard the saying, "paybacks are a..." well the hubby agrees 100% and has no problem giving me my shots.  The good part is though, is that he has just enough understanding for what I am going through with enough "no nonsense" to get business done.

We made it through the start up doses before we hit the first snag... I got a cold.  A cold has never been a big deal for me before but when you no longer have an immune system, everyone starts to get a little concerned. I got it right after my last start up dose and it had only gotten worse by the time it was time for my first maintenance dose (2 weeks later).  The Dr immediately said no to my next dose and that if it wasn't better in the next few days then they wanted to look at my white cell count. A few days later came and it was traveling into my chest. They sent me in to check for pneumonia and thank God, the x-rays came back negative.  It took another week before my Dr felt it was safe to try again.  An entire week later than I should have waited.  The big thing with Humira is that you need to keep a certain amount of it in your system at all times which is why you have to give yourself an injection every two weeks.  The Dr gives you 12 weeks to see if it's working well enough before they pull you off and I'd hate to go through all of this to have it not work because I can't take it like I'm supposed to.  Anyway, back on my doses again.  I don't really notice any difference but I can say that the 3 weeks that I was off of it, I was extremely tired again.  So even though I don't really feel it, it must be doing something :)

Other than that, I turned 30 on the 9th of May.  Age is definitely just a number to me but at the same time I really don't feel like I've been on this earth for 30 years.  How does it go by so fast?!?!  My hubby has now been apart of my life for half of it and we've been together 45% of it :)  How crazy is that!!!

Well I know there's more to catch up on but that's it for now, the time clock is calling my name :)

An Online Enemy of Sorts

I've been searching all night for blogs of others with Crohn's Disease in hopes of finding someone else's journey that I could relate to or see how this wonderful and lovely (major sarcasm there) disease affects others.  I have to say that they are not many.  That's a good and a bad thing depending on which way you care to look at it.  What ending up happening though was that I had a revelation that thoroughly freaked me out and is definitely not healthy for my state of being at the moment.

Everyone's journey with Crohn's Disease is different.  It unfortunately has the capability to jump all over your digestive tract which is why everyone does not respond the same to the disease or treatments.  I've never found anyone with likeness to my journey.

Here's the shortened (ha ha... that's a joke) version my last 14+ year journey with Crohn's: 

I was diagnosed at 15 with Ulcerative Colitis after being told for a month that it was just a really bad stomach flu (thank goodness for my strong willed amazing mother who knew better than that).  I was immediately put on Salfasalazine and after a while I started to feel better so I weaned myself off of it.  The spring of my Jr year in h.s.  I became extremely ill again, went back on the meds, and immediately made an appointment to see a G.I. (which was booked until July).  By the 4th of July I was so sick that I could eat and couldn't take my meds because I threw EVERYTHING up, even water.  My amazing boyfriend (now husband) spent those last few days carrying me around because I was too weak to stand longer than a few moments.  On the day of my appointment, the G.I. took one look at me and said that she was admitting me into the hospital and we could talk after I was checked in.  That first stay at Doernbecher's Children's Hospital was 31 days.  During which time I was put on TPN (a feeding tube that bypasses the stomach) so that my colon could rest but it didn't do what they'd hoped and 3 weeks into my journey they let me know that I needed to have my colon removed. My family prayed and talked but the doctors said that at this point there wasn't any other choice. They showed me the horrible pictures of what my poor colon looked like but it wasn't until after I came out of surgery that they told me that if I hadn't gone with the surgery when I did or even at all, that my colon would have burst and all that poison in there would have killed me.  This also was the first I'd heard of Crohn's (the un-curable sibling to U.C.) but they wouldn't know one way or the other til they looked at it during surgery.  Best case scenario they should be able to create a j-pouch on the inside with my small intestines so I wouldn't have to have a permanent colostomy on the outside of my body at 17.  The whole process would take 3 surgeries to complete during the course of next 6 months (wasn't quite how I thought of spending my senior year in h.s.).  Surgery went well and they were 100% sure they were dealing with U.C. and not Crohn's which meaned that life would go on as normal after I healed because without a colon you can't have U.C.  I made it through my senior year very exhausted, not at school a whole lot, and a little cautious (hiding a temporary ileostomy can do that to a teenage girl) but with high hopes for the future.

I started college that next fall really excited but still feeling really exhausted.  I kept getting what they called pouchitis - an infection to the little reservoir they'd created for me.  I also never returned the health they expected me to.  During my sophomore year I lost my health insurance and it all started down hill from there.  That summer I exhausted myself that my anemia became so bad that my legs became covered in welts that looked like someone had hit me repeatedly with a baseball bat.  From there I got my first fistula.  I had no idea what was going on or what it was and no doctor to talk to.  I went to the emergency room and came home in tears because the doctor had no idea what I was talking about tried to tell me it was an STD (I was a virgin and not sexually active).  It would heal and go away and then return.  I was hospitalized many times over the course of my Jr and senior year in college and it even caused it so that I only completely my degree as far as I could to graduate... completely missing out on completing my program and student teaching.

It wasn't until after college that my mom could get me on her health insurance for a short while.  I went back to the doctor and they kept saying how they must have missed some of the U.C.  It wasn't until I had a major fistula that sent me to the emergency room that we finally started talking about Crohn's.  The light bulb:  U.C. doesn't have fistulas but Crohn's does... and Crohn's is not curable.  I then found out the next big blow.  In Crohn's you never want to do a complete removal of an organ because the disease will just attack another digestive organ, you are just supposed to do re-sectioning.  But I'll never know if the right choice was made to just take it all out... I mean I saw the pictures and they were really bad... but my doctor's not around to ask, he's now called Dr. Death and sitting in jail after being charged with errors that caused the deaths of many of his patients... but who's to say whether it was a mistake or it was just the way that my path with this disease was taking.  I lost my insurance again due to age but got set up with a Dr during one fistula surgery that was willing to help out however he could.  He got me set up with Pentasa and infusions of Remicade but both were too expensive without insurance that I was told I couldn't continue without paying my bill.  I really wasn't on it long enough to know if it worked but once off you can't go back because you become allergic.

This roller coaster has been they craziest thing.  It's only gotten worse as time has gone on.  My worst fistula was 2 years ago and came 3 months before we got married.  This one decided to travel outside of my digestive tract into another organ and I had to take an entire month off of work to re-cooperate... re-cooperate, not heal.  My poor husband, being married to me must be a nightmare.  Neither one of us had any clue that the road was about to get so bumpy... nothing in the past 11 years of our relationship had prepared us for the newness Crohn's had in store for our future.  Each fistula has gotten worse... to the point that I'm starting Humira next week (which I've done everything possible to avoid).

Thinking about my journey and everyone else's tonight is what freaked me out so much.  Tonight I saw a picture of a woman who had a fistula that traveled out to her tummy by attacking a scar from a previous surgery.  Sounds disgusting and scary but it's not what scared me.  What scared me is:

1. I can control most of this disease but I can't control the fistulas. From what I've read, anyone who's ever "cured" their Crohn's has never had a fistula.
2. I can't have a resection to remove part of the disease like everyone else because none of my fistulas begin in any place that can be removed without removing the little hope that I have for not having a permanent colostomy for the rest of my life.  As my Dr says, we loose that and we loose all other options.
3.  If these injections don't work, outside of some miraculous healing, I am out of options
4.  I'm scared -- I can't stand admitting it but I am.  I've been strong for 14+ years.  I'm always the optimist.  I'm not worried about getting through this... I have a blessed life and will no matter what.  But how am I going to feel if it doesn't work and this disease will have stomped on every path I thought I was supposed to travel down.  What will happen to the things that I cherish most if this same path keeps it's unending circular shape and nothing changes?!?!

Sorry to unload this but I can't wake up the hubby to confess my fears because we both have to be at work in a couple hours and he needs his sleep. 

Just goes to show you that all the information on the Internet isn't good for you ;)

quick update

It's been almost exactly two weeks to the hour since I got out of surgery and I have to say that I've felt better.  Overall, I have been doing much better but this recovery is a lot sorer than some of the other times.  Just when I think that I'm well on the road of recovery my body will just start aching (for lack of a better word) all over again. But I'd definitely rather deal with this than how I felt pre-surgery any day :)

The real update though is that I heard from the company who was setting up getting me on the Humira and... the order is being processed and will be here on Tuesday.  Completely freaking out here!!!  I called the Dr's office and we have my teaching and first injection set up for Thursday.  Ugh, one week from today.  I am still a mix of emotions but I know that God's not going to put me in any situation that I can't handle either way it goes.  Thank you God for that!!!  So we shall see.  I welcome all of your thoughts and prayers these next few weeks.  I'm going to need them!!!

I know this is a fairly unknown disease and topic for some so if you have any questions... just ask!!!  Education is the key, not to mention that talking about it helps me sort out what I know and feel :)

I'm Going Left... No, I Mean Right

So, I failed....

Not really, but my number one and two priorities didn't happen.  Apparently someone had other plans for me.  I managed to barely make it through my husband's 30th birthday weekend extravaganza with some major help from a dear friend and one of my sister-in-laws (thanks ladies).  It was only by the grace of God that I physically made it through though.  That weekend plus two days of struggling through work and my body put it's foot down on my priorities.  One crying phone call to my boss about how sorry I was that I couldn't even stand up long enough to get ready for work and I knew that this wasn't going to get any better.  I got off of the phone with her and made the call to my Dr's office.  The first response was that she (my doctor) was booked all the way out til June but since I was in bad shape they were going to find her to see what she could do.  A matter of minutes later they were calling me back to say that my surgeon saw this and wanted to see me the next day after he got out of surgery... aww crap was all I could say, however as far I knew at this point he could also take one look at me and say that it looks like it hurts but nothing's infected yet and I was going to have to wait it out.

Talk about one of the longest and painfullest nights of my life.

The next afternoon I had the hubby drive me to OHSU.  Definitely shouldn't have been driving myself for sure and it also was a precaution so that I wouldn't be alone just in case the worse case scenario happened (surgery).  I don't think that I've ever waited so long to see a doctor... but I knew exactly why it was taking so long.  See, my surgeon has known me long enough to know that if I actually drag my butt into their office then there is something really wrong, so he was putting other patients in front of me so that he would be able to take me right into surgery if needed.  The problem was that the longer I waited though the more worried I got that there wasn't going to be anything that he could do and I was going to leave in the same amount of pain that I arrived in but with a more than irritated hubby who'd been sitting in the waiting room for well over an hour at this point.  His medical student kept on checking on me and asking me more questions which I have to say was making me a little crazy.  Finally my surgeon walked into the door.  He asked me two questions and immediately after I answered said, "Well you know I'm going to have to take a look now." "I kind of figured that," was all I could say.  A two second peek and response of, "Ohhh-kayyy" was all I got.  Darn it, I knew what that meant.  We went through the same routine:  well, it's definitely an abscess... dang it... well, I can try and drain it here... um okay, but you know how well I do with that...  well, you'll feel some instant relief if it works...  okay, but you'd better get my husband so I can break his hand.  Hubby comes in the room thinking who knows what and my Dr sits him down and shows him how to hold his hand and fingers so I don't break them while he makes the incision.  A little numbing and it's time to do this.  One cut and I scream and I do mean scream... whole body, head to toe, no way of controlling it scream.  I've only screamed twice in my life before this and the first time was the first and last time he'd tried to do this same thing 2.5 years prior and the second was in the car after wards on the ride up to the hospital because by trying to drain it only made it worse.  Instantly I started to sob... the tears flowed for so many reasons.  I cried for feeling like a baby because I felt like I should be able to take the pain.  I cried because I screamed.  I cried because of the pain.  I cried because I knew that because he couldn't get it drained that he'd have to do surgery. 

I get myself back in check because this is my reality... this is my life.

We sign all the consent forms and he tells me that he wants me to stay overnight this time so we need to get headed up to the hospital to get checked into my room before surgery.  It's getting late and hubby has to be up for work at 4am so I call my parents to come so he can go home but of course he won't go until he's sure that it all goes okay.  Surgery gets scheduled for 11pm and I am still in the process of getting checked into my room when all of a sudden they're at the door to take me to surgery 2 1/2 hours early... guess that's one way to not have time to get nervous.  A few questions from the doctors and a few kisses from my wonderful husband and it was off to sleep for me. 

The surgery went fine but they found a lot more infection and damage than anticipated which was why trying to drain it in the clinic didn't work.  I woke up with another seton in, which was exactly what I'd asked them not to do if at all possible but as the Dr said, "we didn't have a choice, it was that bad." 

It's been a little over a week since surgery and for the most part I'm doing better but it's still very sore and at times painful.  According to my actual G.I. doctor though I'm doing better than she expected.  She told me today that she's surprised I can even sit upright comfortably.  Thank God for my high pain tolerance is all I can say to that!!!  This surgery though has brought me to the bottom of the barrel though in regards to what choices I have left without allowing them to take more of my organs from me.  I have gotten all upper digestive attacks under control but everything lower is still under attack with no apparent signs of ceasing.  The morning after my surgery my G.I. doctor told me that she was going to start pushing me on the Humira issue and that I needed to give it a try.  I've been praying and asking for prayer all week.  It's in the process of being approved through insurance and should be here next week.  Some parts of me are totally at peace with this and others are completely freaking out. I'm asking for more prayers!!!  The usual saying that it doesn't hurt to try doesn't apply here and there is no guarantee that it will work.  The possible and probable side effects of this medication aren't something that I am taking lightly but at the same time, neither is my quality of life... and right now, I want it back!!!  Please join me in prayer and send me a message if you'd like some more specifics.  I am grateful for any support I can get!!!