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Tuesday, March 29, 2011

Tuesday Turnabout

Today is Tuesday, so of course that means it's time to see more doctors! ;) I took my films in to Dr. Saturday to see what he thought. He and another doctor loaded in the films... and as they came up, there was a collective groan and "Oh. My. Goooooosh" as my sick little guts filled the screen. They apparently look quite bad. I heard this a few times yesterday, but the reaction today was pretty dramatic. I'd rather receive special attention for doing something cool besides growing a veritable garden of pelvic abscesses. But I digress.

Once he finished looking at the scans, Dr. Saturday turned to me and pointed to my bookbag. "You packed?" he asked. He wanted to admit me to the hospital on the spot. I looked at him with terror in my eyes. He modulated and said he'd allow me a few days to get mentally prepared (See? I like this guy. He understands me). He really did want to admit me on Saturday for a PICC line and TPN.

When all the dust settled, this was the plan:
  • Thursday at noon: Get admitted.
  • Get a PICC line inserted.
  • Start TPN (IV nutrition) and IV antibiotics.
  • Thursday - Tuesday: Get plumped up and juiced up and full of antibiotics while watching movies, entertaining millions of guests (PLEASE COME AMUSE ME!), attempting to catch up on thank you notes from August surgery (impossible), studying for the MCAT, decorating my room, attempting to eat a lot, harassing the staff, etc.
  • Tuesday night: SURGERY
Surgery will be what I've discussed previously - basically removing the (here it comes again!) anal canal and cleaning out the pelvis as much as possible through that hole, packing the wound with stuff, and seeing how it turns out! Of course, they don't really know for sure what they will find or what they need to do until they actually open me up, but that's the best guess.

Hopefully, about 2 days after this, I would be able to go home. But we all know how well I do after surgeries. So no real conjectures on this.

Last night, I was praying that God would give clear direction as far as the "when" of surgery. He certainly did that! He, once again, shows Himself faithful...

After getting all this news, I felt a little weird. Agreeing to another surgery was tough. I went up to see my brother at church for a hug... and ended up also having Tom and Rocky and Mrs. Bone and Dusty all pray for me! It was very special, and I'm thankful for the fellowship of God's people who are so faithful to pray for me and my family! Please keep us in prayer as we prepare to embark on a new adventure (sounds like a tag line for a new movie)!

Hannah ;)

Monday, March 28, 2011

Monday Doctors

My prayer over the weekend was that God would make it very clear which doctor I should choose. I was worried that it would be a tough choice...

Monday morning I went back to see Dr. Sidekick. He explained that I have basically two choices: one, surgery to remove the (wait for it... favorite phrase ever....) anal canal and clean out the abscesses through that incision only, then packing that wound. This is the conservative surgery. The more definitive surgery would be to open me up and really clean everything out, possibly necessitating plastic surgery and stomach muscle flaps transposed into my pelvis to reconstruct things. HUGE surgery with several WEEKS in the hospital. I elected for the conservative approach... ;) The problem is, of course, that it might not actually work. It might not heal, they might not get all the infection out, etc. It was sobering.

The interesting thing is that he gave a name to the weird pain/body freaking out episodes I've had after both my surgeries and after my drain placement procedure. It's called SIRS, Systemic Inflammatory Response Syndrome, basically a form of shock. My immune system is just so reactive that it causes inflammation everywhere after it gets "assaulted" by surgery. And it makes my heart rate soar, blood pressure plummet, oxygen levels bottom out, incredible pain, etc. So we would be hoping that my body will NOT do that if I have surgery again...

Next I went to Dr. Second Opinion.

Pros:
He gave very detailed explanations.
Very caring and helpful, and experienced with the surgeries I've had.
His office building is snazzy and mod with comfy waiting chairs.
This picture was in the exam room:



Cons:
He definitely thought of himself as a second opinion only. He did not really want me as a patient.
He told me to stick with my current doctors, since they are "doing their very best for you."

Not Really a Pro Nor a Con But an Interesting Side Note Worthy of Blogging:
His nurse had an honest-to-goodness mullet. No joke.

In conclusion, God made it so apparent that I should go with Dr. Saturday. All three doctors have essentially laid out the same choices and possible surgeries for me - they are all saying the same thing. So that consistency is good. Dr. Saturday had the most holistic approach and was willing to take me with all my millions of issues. The only thing that makes me nervous is being at a different hospital that is not familiar with me. God is so good and I'm so thankful for His clear direction!

Hannah ;)

Sunday, March 27, 2011

Dr. Saturday

So... Saturday bright and early found me trekking to the doctor's office to meet with a new surgeon. I was undecided if he was a sick workaholic masochist or just incredibly devoted to his patients to see me on a Saturday morning!

Since I'm getting 2 opinions besides Dr. Sidekick, I started making a mental list of Pros and Cons for Dr. Saturday...

Pros:
His waiting room has two fish tanks! My pediatrician's office had fish, too. This is a good sign.
His exam room has slightly dirty colon jokes on the wall
He is seeing me on Saturday

Cons:
His building smells like mold
His building was hard to find
His exam room has antiquated scoping tools and such laying on the counters. This is a major turn off.

The appointment went well. He seemed to instantly grasp the entire situation, knew exactly why I was having the problems I'm having, he saw the big picture... it was pretty amazing.

One of his first comments was about my size... he wanted to admit me to get a PICC line and start TPN (IV nutrition) to get me plumped up a little. I balked, so he said I needed to do 2 cans of Boost/Ensure per day in addition to what I'm doing now. I told him I had talked to a dietician and was trying to do the 6 meals a day thing. He looked at me and said, "Honey, it ain't working." So I got some shakes and I will be trying to incorporate them into my diet... yuck. I am losing weight again, though, and I definitely want my body to be better nourished for this surgery, so now is the time for action! ;)

He said that I still have my (least favorite phrase ever coming up...) anal canal present. He says that he usually takes that out because... get this... leaving it in tends to cause pelvic abscesses that can't drain and can't get better. So yeah. It needs to come out.

His plan would be something like this: Get me admitted for 3-4 days to get some IV nutrition going, re-run some tests, and then do a small surgery or "exam under anesthesia" to see exactly what is going on in my pelvis. Then, the next day, he would do surgery to remove the last remnant of my J pouch and try to clean out the abscesses as much as possible. Then, he'd put in this foam WoundVac stuff to suction out the infection. After a while of this, they might replace the foam with a drain like I had before. This could all be done, hopefully, through my, um, bottom. Hopefully, eventually, the infection will all drain itself out, and the wound will heal, and my bottom will one day heal itself shut.

This would be an unpleasant, uncomfortable (drains and wound vacs in my bottom) experience, but it is much less invasive than my previous surgeries have been. And hopefully, it will work to get rid of the abscess!

He couldn't really say anything for sure (and I still haven't seen my other opinions) until he saw my actual films, not just the reports, which was all I had. So he asked how soon I could get them. I told him that I could probably get them on Monday... and his response was, "Okay, I'll need to see you again on Tuesday." He definitely is responsive! The only thing I didn't like was that he didn't do a ton of explaining... He did explain everything, just wasn't super in depth. Hopefully was just because he didn't have the actual pictures to look at yet. But I liked him and had a good experience and would feel comfortable with him. He saw the complete picture of all my weird symptoms and problems and didn't just focus on my stomach issues. That's a good sign...

The day ended on a somewhat awesome note. The building across the way was having this party... on every floor, there was a different catered buffet line. There were 10 floors. In keeping with my desires to follow Dr. Saturday's instructions to get in some nutrition... we crashed the party and hit up every single floor. No joke.

On Monday I will meet with Dr. Sidekick again and another opinion. Fun fun!

Hannah ;)

Friday, March 25, 2011

The Rest of the Week

Well, Tuesday ended up being very tough! I had to leave work early because I was hurting so badly that I could not concentrate at all and none of my meds were helping. ;( I've NEVER left work EVER, no matter what, so this was a big, big deal. I felt so horrible and I felt bad that I let the folks at work down, but it was for the best, I guess.

Dr. Pain's office worked me in, 'cause they are just awesome like that. ;) The nurses told me that I was their favorite patient. He gave me some different pain meds to test drive. You see, I have really, really strong pills - I call them my "ABORT, ABORT" pills, because they pretty much knock me out. Obviously... I cannot take these at work. ;) So he gave me some of the same drug in 1/3 the strength, so I can try to see if I can achieve functionality - hurting little enough that I can think straight, but not so drugged that I can't see straight. Oh my life... ;P So far, the plan has worked. And once I got the pain under control, I actually took quite a bit LESS medicine overall for the rest of the week.

He also talked to me a lot about the mental side of things... just asking questions about how I think about my illness, and stuff like that. I thought that was an interesting question, and I've been pondering that. He also talked to me about some natural stuff that I'm trying. He does the absolute best job of treating me holistically.

The rest of the week got a little bit better each day. It was definitely a rough week, and my energy is pretty low, but I was functional again, thankfully! I'm thankful for God allowing me to make it through the week... I was afraid, after Monday and Tuesday, that I was going to have to just throw in the towel at work.

Hannah ;)

Monday, March 21, 2011

Up and Down

Thank you for your prayers - I know SOMEONE must have been praying, because Friday and Saturday and Sunday were BETTER! I took extra steroids on Friday, and it was a much better day as far as pain and energy and nausea were concerned! Praise God!

I did get into trouble with my endocrine doctor. She is upset that I have not been able to taper at all on my steroids since... August. Ugh. Trust me, she's not as upset as I am! No one wants to be off steroids more than I do! It just isn't working. Every time I drop down, I feel so awful. I've tapered off steroids before. It's been hard at times. It has made me feel crummy at times. But I've ALWAYS been able to keep tapering. Until this time... I don't know what's different, but I really think my body just can't do it! Anyways, please pray that God will give Endo doc and I wisdom to know how and when to taper, 'cause whatever we're doing now isn't working. I dodged a bullet, though, since Endo doc decided it would be unwise to taper until after I'm better from my upcoming surgery. At that point, we will regroup and figure out a new game plan. I am already dreading that day. The attempts to taper followed by complete crashes just destroy me. I've tapered off steroids many, many times since I got diagnosed with UC, but for some reason, my body just can't do it now! Anyways, that's a battle I don't have to face until after I am completely recovered from my upcoming surgery, so I'll leave it in His hands!

So, like I said... the weekend was GREAT! I went HIKING on Saturday... that's right! ;) I could hardly walk a few weeks ago, and now I'm hiking... yesssss! Praise God! Sunday was great, too, until the evening. I totally crashed - lots of pain, lots of nausea, too tired to move. I fell asleep around 5:30, got up briefly to take night meds, and went back to bed. But whatever - I had a wonderful couple of days and I fully enjoyed and lived up every second of feeling good!

Getting out of bed this morning was HARD. Today was HARD. My belly is just really painful. Wearing a seatbelt hurts, because that's right where the abscess and my pain is. Going over bumps or sitting down hard causes waves of pain. I'm also having that all over pain again - my whole body just hurts. Work was tough today. I am having a hard time working. Usually no one can tell when I don't feel good, but this afternoon, my stomach was hurting too much to hide. ;( After work, I had to curl up in my car for over an hour until I felt okay enough to drive home.

My GI doctor and I talked tonight. He is going to talk with ID and see if we can perhaps change my antibiotics to something that will cause LESS overwhelming nausea (I drove to work with a cup beside me because I feel like I'm about to toss my cookies. It seems to be bad in the mornings and evenings, but okay during the day... He is also going to talk to Interventional Radiology about my most recent MRI on the remote chance that I could temporarily delay surgery/be more comfortable until surgery by having another drain placed.

I am so thankful for the temporary reprieve this weekend! I felt so good that I thought maybe I was fine and beating the abscess... Sunday evening and today were "back to reality" for me! I'm back to feeling pretty miserable. Please pray that I would be a light for Christ!

Hannah ;)

Thursday, March 17, 2011

Trust and Obey

Thank you all for your prayers and encouragement to me... it is a huge blessing and greatly needed! Please keep it up... I am so thankful for the encouragement.

I went back to work on Wednesday, and I was okay, but went to bed soon after getting home. I did talk to GI Dr on the phone yesterday. He reiterated the scope findings - basically, that there is some intestinal tissue that should have been removed in August that is still present and is causing problems - possibly that is setting off my systemic inflammation (arthritis, etc). This needs to come out! Also, the abscess is causing my other pelvic organs to be "reactive" - everything is inflamed and angry. The abscess also needs to come out and my abdomen needs to get cleaned out. We discussed surgical possibilities again... he is working on sending my records to some other folks, too. Basically, I will be seeing THREE surgeons next Monday (in a little over a week).

I'll be seeing Dr. Sidekick, and also two other surgeons... each representing different hospitals. Just to get three opinions on what is going on and what needs to happen. Maybe three is excessive; I don't know. My GI doctor and I don't think that I have anything to lose by getting opinions from other experienced doctors. It was totally divinely ordained how all three of these appointments fell into place so amazingly yesterday and today. The hard part is going to be choosing between the three doctors - I really don't think that there is a bad one in the bunch.

I'm feeling sort of miserable... I'm having that all-over body pain, and my abdomen is really hurting. In speaking with my doctors, the consensus is that I will likely just feel awful until they get the infection out. Although I'm not convinced that all of what I'm feeling is from infection. Plus, the antibiotic cocktail I'm on is infamous for being very harsh. They make me pretty nauseated. I'm SUPPOSED to be working on eating well and gaining weight, but I've been feeling too sick to do a good job. If I'm going to have surgery, I really really need to be better nourished going in so I have a better chance at healing this time. Please pray that my tummy settles down so I can get in some good nutrition!

I am still trying to figure out what to do about work. I had today off, which was great, since I barely got out of bed! I am having a hard time getting comfortable enough to be functional and my energy is pretty shot! ;)

Please pray for wisdom and strength and peace. God has given me a lot of peace, because I can't really do anything else until after I see the surgeons. I can't make any surgery decisions or plan my life or anything until then. So, on a purely pragmatic level, I have nothing to worry about! On a spiritual level, God calls me to NOT worry about tomorrow. He is in control of this whole universe, and whatever He calls me to endure is really just a drop in the bucket. And He always has a reason, although He does not have to explain it to me! My job is just to trust and obey. We used to sing this hymn all the time as kids - how Sarah and I learned to harmonize ;)

"Trust and obey,
For there's no other way,
To be happy in Jesus,
But to trust and obey."

Simple words? Perhaps. But what deep truths. Do you practice this every day?

Hannah ;)

Tuesday, March 15, 2011

The LAST Scope

The title of the post reflects my heart's desire... ;) and I am BELIEVING that this was the last scope I will EVER have to have!

I just have to have a big shout out to everyone who cared for me today... each and every person, from the check in lady to the anesthesiologist, was exceptionally kind, caring, and so wonderfully nice and tender and sensitive... the great people made it a much more pleasant experience than a scope should be! ;) God is so great to provide such sweet folks to take care of me.

I talked to Dr. Sidekick before the scope. Basically... I need surgery. The abscess, based on the MRI report, has actually spread to involve my left ovary, my uterus, my vagina... it's spreading throughout my pelvis, and he thinks it could spread to my bladder and my pelvic bones, which would be NOT. GOOD. AT. ALL. What he is recommending is surgery to go in, remove all my remaining anus/rectum (which, if you recall, Dr. A was SUPPOSED to remove in my August surgery), remove the abscess, clean out my pelvis, and attach a WoundVac to literally try to suck out the infection and suck the wound shut. This may also call for the involvement of plastic surgeons to basically reconstruct my pelvic area. He HOPES that this would heal and that they would be able to get all the infection out. I asked him about watching or trying more antibiotics, but we are past that at this point.

The actual scope was a pediatric scope, using CO2 gas instead of O2... they were scoping in all my, um, holes down there to see if there were connections and what was unhealed. Basically, they could not really see much and couldn't get the scope in very far.

I woke up in quite a lot of pain. Usually, I wake up feeling fine (if totally druggy and loopy), but not this time, alas. The recovery nurse asked me what I wanted... fentanyl, morphine, or dilaudid! Haha - not a bad choice in the bunch! I went for my personal fave, dilaudid. Then a chaser of my other favorite, Zofran (for nausea)! It took a few rounds, but I eventually started to hurt less and felt more comfortable. I was totally loopy for the rest of the day. The recovery nurse was awesome and my number one hero, because she also gave me a bag and a half of IV fluids. She (correctly) figured I was pretty dehydrated. She was so smart. A Semi Colon going without water all day so she can have anesthesia gets pretty dry! Getting the fluids was fantastic!

I am struggling with the unfairness of this whole situation... it's not fair that I need another major surgery to remove stuff that I was told would be removed in August. But then I have to stop and think... it is not fair at all that I lived in rebellion towards God, hating Him and doing my own thing. It is not fair that God punished Jesus for MY sins. It is not fair that God counts me as having His Son's righteous life.

This does not mean that I don't hold my doctors accountable for their mistakes. But it definitely changes my perspective and shows me that I have no right to hold anger in my heart against them!

Please pray for me and my family as we seek (at my doctor's counsel) a few other opinions about how to proceed. Please pray that all this can be worked out in a timely manner. Please pray that we will find the right surgeon for the job. Pray that I will be able to make wise decisions about what to tell my bosses, since I will need to have time off for all this...

Hannah ;)

Sunday, March 13, 2011

Of Surgeries and Potato Chips

I spent Friday playing doctor phone tag... I called both the ID and GI clinic beginning at 8:30 am, trying to get a straight answer concerning the antibiotics - should I take them? Should I not? I've been feeling pretty crummy, so I had pretty much decided to start taking them. But I needed my doctors to talk to each other.

Unfortunately, by 2:30, I had not heard back from either clinic, so I started calling again. It was Friday. If I didn't hear back soon, it would be the weekend, and it'd be sometime Monday before I got my answer. At last, still not getting answers, I called GI Dr's cell phone. It's a very rare thing for a doctor to give out his or her cell number, and I don't abuse that privilege. Anyways, I called him. While he was at his driver's test. You know, the test he forgot about. ;)

I clearly expressed my frustration and concern about the lack of progress and my worsening physical state. I told him that I came in to his office feeling bad 6 weeks ago, and since then, I've had an MRI. That's all that has happened. He did not return my emails or calls. We haven't done anything to help me feel better. I told him that we needed to do something, and if he couldn't, I needed the name of a doctor who can. I also told him that he and ID need to start communicating. And that waiting a month to decide to act on a scan is unacceptable and negligent.

So... it all boils down to this... I will go back on antibiotics. I will call/text GI Dr's cell every day with a report on how I'm feeling. He is giving himself an ultimatum - I need to feel better in 10 days. If not, we will have to do something drastic (surgery, IV antibiotics). I'm having the scope on Tuesday. It likely will show that I need surgery. If this is the case, we are in agreement that I will see another surgeon at another institution. I have this abscess in my abdomen, a smoldering infection. It won't clear up on its own, and it hasn't cleared up despite months of antibiotics, either. Surgery to clean out my abdomen will be extremely challenging and bad for me, though, considering my diseases, history, previous surgeries, steroid dependence, etc. In GI Dr's words, "You are in a terrible position." He is a pro at sugar coating! ;)

I'm a little skeptical that things will actually start moving on this. I've been having surgical complications for nearly seven months now! So far, my concerns have been pushed to the back burner or ignored or overlooked or something, I guess, since we are this far out and I am still having so many problems. It is frustrating and scary that nothing happened, medical-wise, for several weeks, yet I'm now being told by ID and GI that I am in a serious predicament because the scan shows such bad problems that need to be fixed. I am absolutely terrified of having more surgery. But I may not have much of a choice.

The reality is kind of hitting me that this whole having surgery thing is sort of like potato chips - betcha can't just have one! ;)

Honestly... I am simply clinging to some simple truths: God is good, His promises are true, and He has used my health stuff only for good in the past. Therefore, I have no reason to think that He will use this for anything but my good, His glory, and growth in my life and in the lives of others!

Hannah ;)

Saturday, March 12, 2011

Woot Woot

Julia did NOT have to have her scope! Turns out she just has a stomach virus, not pouchitis, and she is at home. Praise God, and thanks for your prayers!

Hannah ;)

Friday, March 11, 2011

Julia

Please pray for my little friend, Julia! You may remember that she had her J pouch surgery a little over a year ago. She is in the hospital tonight for a scope of her J pouch... they think that she has pouchitis. Please pray for her and her family and her doctors. I love her so much, and I know that God loves her even more, and that He will do what is very best!

Hannah ;)

Crossed Wires

This week has been interesting... I go to work, come home, and go straight to sleep! I can barely make it through the day because I'm so tired. My pain is getting a little bit better overall, which is fantastic! Downside is that I haven't had this level of fatigue for a long time. I went off my new anti inflammatory and so my joints are flaring up again, but that's my fault for quitting my meds! ;)

My doctors are all pretty much in the doghouse right now! My GI doctor cancelled my scope for today because he had to go get his driver's license renewed. Seriously?!? Everyone at work is doing scheduling gymnastics today so that I could have the day off to get this done. Thankfully, he rescheduled it for a day next week when I have off work... but it's just one more delay. It was over six weeks ago when he said that we needed to get to the bottom (haha) of this quickly.

Also... I got a voicemail from the ID doctor on Wednesday. They saw I had an MRI, and want me back on antibiotics because I have an abscess. Point number one: I had this MRI a month ago. And you are just now thinking that there is a problem? Point number two: GI Dr says it's NOT an infection, and therefore antibiotics won't do any good. Point number three: So I have one doctor telling me I don't need antibiotics, and the other doctor is calling antibiotics in to my pharmacy. C'mon, "future of medicince, today" (my institution's motto). I need you all to work together.

I have to admit... I think that my extreme fatigue and tummy pain get better when I'm on the antibiotics. But how long can I stay on antibiotics? Can we fix this problem, ever? I just have a lot of questions... and I'm getting two different messages from my doctors. Please pray that these wires get uncrossed! I'm sorry that I'm sounding so gripe-y all the time on the blog... I am just completely at a loss for how stuff like this happens, and I don't know what exactly to do. I know I ask this all the time, but please pray for clarity and wisdom and direction for dealing with doctors... and pray that the doctors will do their jobs. ;)

Hannah ;)

Monday, March 7, 2011

Pain

Let's start with the good news... my joints have been getting way less stiff since last week! It's really great! I can walk so much better and my joints just feel stronger. I think my arthritis flare is calming back down. Unfortunately, I've been having tons of pain - not just my joints, but the all-over body pain I had last spring. You know, the pain that landed me in the hospital and was treated with Fentanyl patches? Yeah, that pain. ;( Also, my stomach has been really hurting off and on where the abscess is.

Last Monday, I decided to be a maverick or a stoic or something and cut back a teeny bit on steroids. So Monday afternoon through Tuesday night, I was a shaky, salt craving mess. There's a "feeling bad" that I can tolerate and push through, and then there's "crash and burn." This was definitely in the "crash and burn" category. Also, I think that if I'm low on steroids, my pain gets magnified. I'm just frustrated because I'm supposed to be trying to taper down off steroids...but I just can't seem to go down even a miniscule amount without my body hitting a wall.

I also started two different medications last week - one is a different NSAID - an anti inflammatory for the arthritis, and the other one is to protect my stomach against the NSAID. One of my pet peeves is taking meds to combat side effects of other meds. It just seems so silly. But that's another story. Anyways, I think that maybe my body just doesn't like those new meds.

On Friday, I just worked in the morning. I went home and got right in bed... at 2:00 pm. I slept til 6, ate some dinner, and went back to bed. That pretty much sums up my weekend. Sunday, I really wanted to go to church, but couldn't make it in the morning. I slept all day, got up and got dressed in the evening... and barely made it through church. I was just so tired and hurting so much. I went home... I hadn't been in that much pain in months, and nothing I was doing was helping. I just felt horrible.

Thankfully... after taking a ridiculous cocktail of meds, God allowed me to go to sleep. And I slept all night. And I woke up feeling... not good, but so much better! I decided to stop the new meds, in case they were making me feel bad, and I took extra steroids today. It's been a better day. Still quite a bit more pain than my "normal," but I was able to function and made it through the day, praise God. I am still totally exhausted, despite the fact that I slept virtually all weekend long. That's frustrating, but oh well!

I'm frustrated with my body... I'm so tired of being in pain all the time and pretending that I'm fine... I'm frustrated with people telling me that I "look so good" when I feel so awful... I'm frustrated with my doctors, who can't seem to figure out what's going on and suggest I look into counseling because they can't figure out how to make me feel better... I'm frustrated because I really don't want to find out what the tests they run will show or not show...

But then I have to do a reality check. Who made me? Who has designed this circumstance that I'm in? Who has promised to work all things together for the good of those who love Him? Who promises to complete His work in me?

It's really not about me and my comfort... it's about Him. It's about His glory.

Please keep me in your prayers... that I will keep my attitude right and my eyes fixed on Him.

Hannah ;)

Thursday, March 3, 2011

Another Scope. No Kidding.

Back in the days when I was not a semi colon, I used to get colonoscopies with disturbing frequency. When I changed to my current GI doctor, he preferred to do sigmoidoscopies (they don't require you to drink a gallon of salty laxative in preparation - all that's required is a few enemas. Either kind of prep is unpleasant at best, but it's worse than torture if your colon is full of bleeding ulcerations like mine was). As I prepared for my first surgery, I consoled myself with the thought that I would no longer have to have colonoscopies once I had no colon.

Unfortunately... I was wrong. My J pouch, Twitchy, which was supposed to heal up to be my "new colon," got inflamed and bled and spasmed continually. This necessitated... you guessed it! several scopes and biopsies of Twitchy to monitor the level of inflammation.

Then, I had my second surgery. Dr. A told me that I would be completely sewn shut! And I thought, "Haha! No more scopes!!"

Well... once again, I was wrong. I am getting scoped on Friday. Through my backside. Through the hole that has completely failed to heal shut after surgery. The two surgeries I've had have not fixed the fact that I am bleeding from my back passage. That's special. ;)

How did this scope come about? On Monday, I started calling the GI clinic, because we need to get this abscess thing figured out and taken care of once and for all! I didn't get a response, so I started calling again around 3:30. It was a good thing I did. It turns out that GI Dr's nurse wasn't in on Monday, so they were going to just leave a message for her to answer the next time when she was at work. Um... no thank you! I told the answering person that I really needed to talk to someone today, if possible, as I'd sent a message a week ago and hadn't gotten a reply. Also, I would be working during business hours for the rest of the week. So this was my only chance. And I was having problems - my lower abdomen has been really hurting again.

The answering man was very nice, and asked me to hold. After several minutes, he asked if I could come into the clinic at 4:30 to see GI Dr's PA. By this time, it was 4:00... so I had just enough time. I talked to the PA, then GI Dr also came in.

So... he is very concerned with what's going on. He thinks that the abscess is not actually infected - it's not full of bacteria. He thinks that it is an autoimmune inflammatory reaction. He said that if it were infected, I would be dead - apparently you can't exactly live and walk around with infection in your belly for that long. ;)

The MRI, in addition to showing that the silly abscess is STILL present, also showed that the abscess is possibly connected to my uterus and other stuff, and that the surgical site where my J pouch used to me is possibly connecting with stuff down there, too.

GI doctor is going to get together with Dr. Sidekick, and using a special teeny tiny scope, they will go up my unhealed surgical site in my bottom and explore! ;) Sounds like fun to you, too? ;) Hopefully he can see what is going on - if I have UC/Crohn's disease inside, if the abscess is connected to where the J pouch used to be, where my organs are connecting, etc. He assured me that I will be asleep for this procedure. I reminded him that sedation doesn't work on me. He said, "Oh, yeah! Do you remember the time when you were awake the whole time I was scoping you?" Um... yes, I do. I was just loopy enough to talk foolishly the whole time, but not sedated enough to feel comfortable. I ended up giving my GI Dr driving directions from downtown Dallas to downtown Fort Worth because I thought he should go get bacon chocolate at Central Market for his pregnant wife who was craving salty and sweet things. Let's not do that again, please! ;) I know what drug works for me (propofol, incidentally the stuff that killed Michael Jackson) and he was amenable to that plan.

Then I got some disturbing speculation. When you consider my fistulas, abscess, weight loss, joint pain, low grade fevers, and fatigue... he thinks that this adds up to Crohn's disease, the sister disease of ulcerative colitis. UC happens only in the colon. If you take out the colon, you are considered cured. In my case, pouchitis came back in Twitchy, which was made out of my small intestine. This is very unusual. They took out Twitchy. So, in his mind, I should be 100% cured beyond the shadow of a doubt. Clearly, however, I'm not. Crohn's disease is like UC, but can cause inflammation anywhere in your digestive tract, from mouth to colon. It also commonly causes abscesses and fistulas. The bummer about this is that it could come back anywhere in my GI tract... and I'm already missing 7.5 feet of it. So that has the potential to be a horrible, horrible combination for nutrition and quality of life and things of that nature. But I'm not overly concerned - I'll explain in a later post, since this one is already epic in length, but, for several reasons, I don't think it's possible that I have Crohn's.

His plan is to see what the scope shows, then go from there... his speculation was that I may actually need Remicade or Humira to reduced the autoimmune inflammation in my body so that the fistulas, abscess, and my bottom have a chance to heal. His other concern remains that some J pouch or colon was left inside, and that is setting everything off and causing the bleeding. In that case, I would definitely need surgery. Any way you look at it, I will probably end up needing surgery or more hard core medications in the near future.

This was obviously hard to hear and something of a shock to me. After the scope, I will definitely be seeking a second opinion. This is just getting so out of hand, and I am not over-anxious to restart meds or go back to the operating room. I just need another perspective, a fresh pair of eyes, to look at me and my situation. If they agree with GI Dr, so much the better. If not... then I will be even more confused than I am now. ;) But I will trust God with all of that!

Please be in prayer for me and my family, as we try to pursue the wisest course of action. Please pray that I can get the scope done without any problems. Please pray that God will lead us to the right doctor for a second opinion (I already have a few doctors in mind, but we'll see). Please pray that my GI and Dr. Sidekick will look at all the information, stay in touch with me, and do the best they can! Finally... please pray for peace and no anxiety as I deal with all this. I don't need to think about the possibilities or what could happen... I just need to trust in a good God!

Although I still can't believe I'm really getting scoped AGAIN. ;)

Hannah ;)