Tuesday, October 21, 2014

recent appointments...

It is absolutely crazy to think that it has been three years since my colectomy. In a sense, it seems like it was yesterday then in another sense it seems much longer; so much happened since then. Thinking back to how I was functioning and living then compared to now, it just makes me appreciate and see things differently.

My appointment with my GI doctor went well. As usual, we discussed my clean out routine. I expressed how I am burnt out from doing so many clean outs. Forget the fact that I have drank over five hundred bottles of magnesium citrate, my body is just tired from doing it. However my GP can't just take a break so we adjusted and tweaked some of my medications in order to hopefully help things. We also discussed my pulse rates. After a clean out, it is normal for me to see my pulse rate anywhere between 140 to as high as 152. Needless to say, I don't feel the best when it's that high but I just deal with it. Anything between 90 - 125 is normal for me, I don't think a thing of it and just keep going. My GI doctor commented that a pulse rate of 152 was getting pretty high. My clean outs are causing me to become dehydrated which are resulting in a higher pulse rate. When you also add to the issue that I had an ostomy (people with ostomies tend to be dehydrated more due to having an ostomy), it's just stacking issues on top of each other. He recommended increasing my fluid intake on the days when I clean out. Normally I'd have no issue with that because it makes perfect sense. However when I clean out, the more that goes in, the more that has to come out which results in making me even weaker. If I have a really good clean out, I have to stop taking in fluids sometime that evening or night depending on how things are going because there is a pretty good chance that I will pass out during the night when I wake up. There is nothing worse than getting to the bathroom and not being able to make it back.

Overall I was content with my GI appointment. He wasn't thrilled with my weight. He explained that weight gain would be hard for me as long I has I had to clean out. Since the beginning of all of this, I have lost around thirty-five pounds. I have an appointment to see him again in November to follow up and see how things are progressing.

In September I met with my surgeon. I had went back and forth with the idea of whether to see him or not. We had spoken over the phone several times and I finally made the call and set up an appointment. Last fall, I had started experiencing some spasming in my remaining eight inches of colon that I no longer use. Since then the spasming had worsened causing me to become experience a lot of pain, nausea almost to the point of passing out when it would take place. Some days I would have multiple spasms and then I would go several days without. It was always sporadic.

I met with my surgeon and explained how bad the situation had become. I explained that I was interested in having him remove the rest of my colon in an attempt to stop the pain and spasming that I had been enduring. It wasn't like I was using or going to use that organ again anyway. He explain to me that a surgery such as that, one where the colon and rectum are removed would be fairly difficult, more than the colectomy I had. The downfall would be that I don't have a colon, just a small intestines with motility issues. There would be a hole in my body where my colon and rectum were and should be. Because those organs aren't there, my small intestines could literally fall into this hole, kink and form obstructions (compliments to my motility issues). This in itself would be something to add on top of my GP. If and when it happened, it would be bad.

He also commented on my motility issues as a whole. Considering where my motility issues are currently and the amount of medication it takes, were the surgeries even beneficial? I quickly corrected him. Yes! They have given me time. So I still have to clean out but when you look at the big picture, who truly cares?! I'm alive and happy and that is what matters. I explained to him that with the colectomy, I have been able to sleep about three more hours during my clean out than I use to be able too. The surgery in itself was worth it for that because I was exhausted from not sleeping. As for my ileostomy, I love it most days and plan on keeping it. He doesn't need to doubt doing the surgeries, I'm more than happy with them even though they considered them as failed surgeries.

I have some decisions to make regarding a port for hydration as well as what to do about surgery. Is it something I want to deal with and just push through or do I want to "risk" my chances at getting an obstruction or kink? With motility issues, it's something you have a chance of dealing with anyway.

Wednesday, August 6, 2014

an uneventful summer...

This summer has gone by so quickly. It is hard to believe that it is already August. Jacob and I have been talking this past week. This coming Sunday, August 10th, we will have been married for one year. This past year has gone by so quickly. It honestly seems like we just had our wedding, like it was yesterday so to speak. 

Since that time, I lost my sweet boy Duke. Duke was an amazing dog. He grew up with my brother and I. He was always right there along side of us. We pretty much did everything together. He was a very protective dog. I always felt safe when Duke was around. After I was diagnosed and eventually had to leave my job, I grew even closer to Duke. Whenever I would be drinking my clean out preps, Duke would lay right at my feet with me. After coming home from every procedure or surgery, Duke would be there waiting. It was just comforting and sweet.

After Duke's death, it was really hard on me. I didn't deal too well. Jacob and I decided in time to get another puppy. With Duke being part lab, I knew that I wanted another lab for their companionship and good nature. We adopted Pepper. She is a combination of lab, bullmastiff, great dane and pitbull. She's going to be a big girl when she is full grown. She is just as friendly, loyal and protective as Duke was. She is FULL of energy and into everything. Puppies are so much fun.

Our summer has been pretty low key and uneventful. My clean outs are still about the same. Some days they work and others not so much. Back in June, I had a "really good" clean out. I woke up the following morning and knew that it had been too much on my body. I could barely move. I spent all morning on the couch and finally let Jacob know that I needed to go to the hospital. I had started vomiting from being so nauseous and dehydrated. There was no way that I would replenish the fluids that I had lost. When we got to the ER, Jacob had to check me in. I was asked if I needed a wheelchair to get back into a room but I refused. Yes, I may pass out once I get to the bed but I am determined to make it there by myself. Hello stubbornness!

After they found an vein, got some fluids and medication on board, along came the blood work. In my head, I was thinking two, maybe three IV bags and I am out of here. I will be perfectly fine, good as new. My ER doctor, who was really good, came in and explained that I had acute kidney failure. My blood work revealed that some of my levels were off as well and as a result I needed to be admitted. I didn't really know what to say. I had just had an ultrasound of my kidneys a few weeks earlier which showed that my kidneys were fine. My bladder wasn't functioning as it should and was retaining fluid but my kidneys were just fine. I had only heard stories of this happening to patients. How could this happen to me? 

Unfortunately my clean out was to blame. My body just couldn't keep up with the clean outs anymore. My doctors recommend that I speak with my GI about getting some type of port (I believe that is the correct word) where I can run IVs at home during the night while I clean out so that this doesn't happen again. During my hospital stay, I had eight IV bags to my knowledge which resulted in me retaining eighteen pounds of fluid. It was so uncomfortable and I prefer that to not happen again. (Are those legs and ankles not scary looking?)

When I see my GI next week, we'll discuss the whole port idea, the possibility of another round of botox for abdominal pain, my clean outs as usual and weight gain.

Tuesday, June 3, 2014


Stress, something that we as people all deal with. Stress comes in many "forms" if you will. It may be type of stress that is short term, such as studying for an exam in college. It is stressful during that time but once it's over, it's over. There is the type of stress where we just get stressed to our max limit, also known as "stressed out" and we simply feel as if we can't take anymore. During these times, we tend to be emotional, a bit edgy, some could even say that we're hateful. I know I get that way when I'm stressed out. It's almost like I need a time out just to calm myself down and refocus.Change is a huge stressor for me. I have a hard time dealing with change because I like being in control and knowing as many details as possible. Another type of stress is when things happen around us and we simply can't control them like an illness, injury or even death. Events and situations like these happen and as people we don't have the control and sometimes fear creeps in. Fear in itself is stressful.

I use to be a big walking ball of stress or at least I felt like it. I was so wound tight and all about the "perfection" in life. Umm, there is no perfection in life. I don't know where I got off thinking that I could just go on being like that. Stress and gastrointestinal conditions and diseases do not mix. It took me a really long time to understand that. After many, many GP flares up and goodness knows how many talks about managing my stress levels, I finally learned to start letting go of things.

Stress affects everyone differently because as people, we're all different. Who would want to be alike? The world would after all be quite a boring place. For me personally, too much stress will send me into a GP flare up. If I am cleaning out and get too stressed out or upset, it will stop my clean out. (I know, it's crazy but it happens.) Last May after being in the hospital for nearly a week due to having my intestines enlarged and inflamed, I learned that stress could trigger this again. It was a new side effect of my GP. Luckily it hasn't happened since. I am a daily work in progress on handling my stress but aren't we all?

Friday, May 30, 2014

the waiting game...

The waiting game, a game that we all participate and play in whether it be in a doctor's office or hospital, at the pharmacy while waiting on a prescription to be filled, at home while we wait for our tests results or by the phone waiting for our doctor to call us back. Let's not even talk about insurance companies and having to wait When you have a chronic illness, learning to wait and be patient becomes mandatory. Things just don't happen. You have to be patient whether you like it or not.

Whenever I went to my first GI appointment with my GI doctor who is also a motility specialist, I knew it would be a long wait because of who he is. I believe I waited close to three hours but in return I got to spend an hour with him discussing my case and the "plan" of action with how about we would go about dealing with my possible GP if the tests confirmed. The waiting was totally worth it.

Way back in the day, I remember I waited forever in the ER waiting room. I had never really been to the ER for my GP. This was an ER in a hospital. Weren't things suppose to move a little faster? And not to mention I was miserable and you know when you feel that bad you have blinders on and all you can focus on at that moment is you and keeping yourself together. Who wants to throw up in the middle of the waiting room? Not me. I still hadn't adjusted to being familiar with the hospital setting including the smells. It was a rough time. For those of you who have GP you know how it goes once you have a bed in the ER; you have to explain to the ER doctors that you actually have GP and that your legitimate. You're not lying and seeking out attention or pain medications. You know how it goes.

When it comes to waiting on test results, ugh. There is no way around it. Time always seems to go by so slowly and just drag. Whether you're getting your results in the mail, by person or phone, you want to know your results so you can deal with whatever the results may be and proceed from there. Or at least I do...

The hardest thing I have trouble dealing with when it comes to waiting is dealing with phone calls.  It never fails that whenever I leave a message for my doctor to call me back especially on a Friday, I will miss that phone call and have to wait the whole weekend to see what the phone call pertained too. Voicemail never does the call any justice. It simply drives me insane.

When it comes to insurance companies, whether you're needing a prior authorization on a prescription or you're needing disability coverage, waiting is bound to happen. Nothing happens automatically. Don't get me wrong, it would be a perfect world if we didn't have to wait all the time but I don't see that happening anytime soon unfortunately. ;)

Wednesday, May 28, 2014

salt cravings...

Salt or sugar, something we as humans crave. When it comes to food especially junk food, you either love those salty foods such as chips, popcorn or pretzels or you tend to have a sweet tooth and choose foods that are sugary and sweet such as cakes, candy or cookies. I use to be more of a sugary person. Gummy candies were my favorite. However things have changed and I crave salt like crazy. I simply can't get enough.

To put into perspective how bad my salt consumption and cravings have become, when I got married, I bought a big salt grinder. I'm currently on my second salt grinder. I may have a problem considering that my husband doesn't use any salt from those grinders.

Before my colectomy, I didn't crave salt. However post colectomy, I noticed that I was craving salt. After my ileostomy surgery, my cravings became very intense especially after my clean outs. The colon is responsible for removing any waste from our bodies made up from food, nutrients, salt and water. Since I have an ileostomy and my remaining eight inches of colon isn't connected to my small intestines, my GI tract doesn't function as it should. Since I have Gastroparesis, I have a hard time absorbing my nutrients. Throw in several clean outs a week and it just complicates things even more. Gastroparesis and ostomy patients can dehydrate quickly especially in heat. For me, output of more than 1000cc/ml per day will dehydrate me. On a day when I am cleaning out I may have anywhere between 3000 - 4000 cc/ml per day. It all just depends on how effective and well my clean out is going. On really "good" clean out day when I have a high output, I will become so dehydrated that I will begin to throw up. A few clean outs ago, almost every time I got up and moved, I threw up. The nausea was horrible. It was all from being too dehydrated. What is bad for me personally is once I get to that point, I can't rehydrate myself quick enough. I get horrible headaches from this. I hardly got off the couch the next day. This all could have been avoided if I would have not been so stubborn and just went to the ER and got an IV.

So the after effect of all of this is that I crave salt. The last time I talked to my doctor about this, they were fine with it. My blood pressure is perfectly fine. When you crave salt, it can mean many things such as dehydration, a lack in minerals in your body or under active adrenal glands. In my case, it is a combination of both needing hydration and minerals due to my GP diet and lifestyle.

After a clean out, a way I rehydrate and replenish myself is by drinking a lot of liquids as well as eating salty foods that go along with my GP diet. (I put salt on almost everything. I know, it's horrible.) To give an idea of how much liquid I drink (which is mostly water), the other night at dinner I drank 32 ounces of water over an hour or so. I felt huge and bloated but I need that amount of liquid with my meals in an attempt to keep everything moving in between clean outs as well as for my hydration. As I said, I drink a lot of liquids. Before my ileostomy surgery, I could not have tolerated this much liquid due to my GP. I still have a hard time but I have just learned how to pace myself and drink, drink, drink all in the name of my ostomy. (Smiling...)

There are all different types of products out there to help with hydration. Sports drinks help balance your electrolytes but they have higher sugar contents and I personally have to watch those. Smart water claims to have electrolytes in their water to help balance your electrolytes. Certain foods naturally contain water such as celery, cucumber and watermelon which aren't all necessarily GP friendly. It just depends on your GI tract and diet and what works best for you. When all else fails, there is always the ER where you can get an IV for hydration.

Monday, May 26, 2014

inspirational quotes and motivation...

As people with health conditions, we all go through times where we are challenged by what our health conditions may do to us physically. What we are able to do today isn't what we were able to _____ many years ago, you fill in the blank. Depending on how we feel physically can play on role on our emotional feelings as well. It all depends on the situation. If I'm prepping for a test that requires me to miss a week of my medication especially those nausea and clean out medications that I can't function without as well as live on a liquid diet, HELLO! I'm going to be bloated, miserable, nauseous, and weak. I'm not going to be able to eat much less get off the couch. Emotionally I am not going to be in a good place because my attitude and outlook is going to stink at times. I learned shortly after realizing that my diagnosis was "here to stay" that I couldn't click my heels like Dorothy in the Wizard of Oz and go back. I started putting up my favorite Bible verses, quotes and sayings around my home and place of employment (when I worked) to just help remind me of what my personal focus is. Don't get me wrong, I still have my days where I have set backs just like everyone else but I'm working on it.

"My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever."    Psalm 73:26

This is my favorite Bible verse. I have had it in my office cube at work, my bedroom mirror, my refrigerator even on my hospital room nurses information board. I find so much comfort and encouragement from this verse. Regardless to what my come and happen to me, God will be my strength.

"Never, Never, Never Give Up!"   - Winston Churchill

I love this quote. It's simply but straight to the point. I am determined and stubborn and on those bad days when I want to say "Okay, I've had a enough!" I reread this quote and it reminds me of my some of my goals and principles as a person.

"May you trust God that you are exactly where you are meant to be."

If I would have had a dollar for every time I have read that.... I'm just saying.

This just reassures me. I am where I am today for a reason and I don't know why. Hopefully one day people won't have to experience what I've dealt with medically but if I can help one person, I'm okay with that. I don't consider my disease a punishment in anyway. It has made me look at life in a different way than I use too.

"If you can learn from your suffering, and really come to understand the lesson you were taught, you might be able to help someone else who's now in the phase you may have just completed. Maybe that's what it's all about after all..."   - Kimberly Stegman-Dieckmann

Kimberly is my sweet friend and the founder of The Gastroparesis Awareness Campaign Organization. When I was first finding my footing with my diagnosis as well as learning the ropes with cleaning out Kimberly showed me the way. She answered countless emails, questions and texts. She explained to me how to live with a disease such as Gastroparesis and have a different outlook than what was expected. I will always be thankful to her for that.

Tuesday, May 13, 2014

ileostomy decisions...

It is hard to believe that is has been a little over a year since I had my ileostomy surgery. Looking back that was such a hard decision to make and go through. I remember going to meet with my surgeon and hearing that an ileostomy was basically my last option surgically next to a transplant which wasn't possible at that time. With the frequency of the clean outs combined with the large amount of medications needed, I was basically headed towards the end of a cliff. Something would eventually have to be done; I couldn't continue to live how I was currently living at the time. The downfall to having the ileostomy surgery was my gastroparesis and decreased motility in my intestines due to the paralysis was that there would be no knowing as to if the surgery would work. Sitting in that surgical consultation, the room was honestly spinning. I knew years before that my GP would affect me in greater ways but I never expected to be hearing news such as this. I had just gone in for another colectomy. I just wanted to have the remaining eight inches of my colon removed and have my small intestines connected to my rectum or even have a J-Pouch created. I was not ready for this. Ostomies were unattractive, foreign and just scary to me.

Over the next couple of weeks, I struggled with finding peace about having the surgery. How would I personally deal with living with an ostomy? How would my life change? How would I look? How would other people perceive me? It was one of the hardest times in my life. When making the decision to have my colectomy, I immediately had a peace about the surgery but I didn't have a peace about this. Finally, finally, I had a peace about this surgery. I realized that it wouldn't change who I am. I would still be the same person; I would just have an ostomy bag attached to my side. Since then, I have actually grown a bit as a person. Going through that whole experience made me stronger and less worrisome about others opinions. 

Along the way, I have encountered some negative comments about my ostomy and how I dress which I suppose is just par for the course. Just like in life, with any disease, you have to grow "thicker skin" which isn't always easy and can take quite some time. You just have to look the other way and just things go. When I was being fitted for my ostomy, they explained that I would live in athletic wear because it would be the only thing that was comfortable. They weren't kidding. Jeans, khakis, dress pants are all painful for me now. Because I am a short person and have much of a waist, so there isn't a lot of room so when I sit down. My clothing bunches up under my ostomy and causes pain and can eventually result in havoc in the end. It simply isn't worth it most times. Athletic pants fit right because I can adjust them and they are soft. I live in loose t-shirts or sweatshirts because they are long enough to cover my ostomy (I don't tuck my ostomy into my pants) and they allow room for bloating which is a multiple times a day occurrence with my GP. Originally my plan was to tuck my ostomy into my pants or wear a wrap. I have invested hundreds of dollars into custom wraps tailored to fit me but they are so uncomfortable for me personally and I find them to be bulky. They eventually end up irritating my skin from pushing my output up under the ostomy wafer so I just leave my ostomy bag out under a camisole. The downfall is that it is more visible but it saves my skin and is ten times easier not to mention more comfortable. I have received comments that I need to dress better and more appropriate. Ostomies are offensive. It isn't true. A lot of comments come from just being uneducated about a topic and simply not knowing. When I first saw my first ostomy, it scared me. Everyone copes and deals with things differently in their own ways. 

Today I am completely happy and content with my ileostomy. My original plan was to leave the ostomy in place for a year to hopefully get a break from the clean outs and have it reversed in the spring of 2014. However the surgery wasn't successful and I only had a month break from cleaning out. Do I still want to reverse my ostomy? NO! It drives me crazy some days and gets in my way but it truly saved my life by buying me sometime. It actually has some perks.

As for my GP, the past month of so, I have just been all over the place. I'm being scheduled for another endoscopy with Botox. My weight has continued to stay at eighty-five pounds. I have been eating as much as I can but I just can't seem to gain any. My neurologist mentioned that since the last time she saw me right after our wedding, I was only down several pounds so she wouldn't fuss at me (my neurologist is such a cool doctor). I was sitting there thinking oh my gosh, my ostomy bag was almost full when they weighed me. She would have got me about my weight if it would have been empty. I truly got away by the skin of my teeth. 

I finally called my surgeon last week after having some bleeding after a colon spasm. During the past couple of months, the spasms have become more frequent and more painful not to nauseating. After talking with my surgeon, he explained that I basically had colitis in my remaining colon. My colon was inflammation and irritation. How did this happen when I don't even use the organ?! He called in a prescription for several enemas (Oh what fun this will be considering I thought this door was closed in my life, no more enemas. I suppose I was wrong.) that would help relieve the inflammation and irritation. The issue lies in my pelvic floor muscles. They weren't worth much when I used them due to my pelvic floor dysfunction. I have hardly used them in over a year and we all know the story about how muscles become when you don't use them. This should be an experience to say the least; I'm not looking forward to it. If the enemas don't do "their job", we're going to go down that road and remove the rest of my colon. My surgeon explained that normally it was a harder surgery but since I have already had a colectomy and ileostomy, he could do it robotically so it wouldn't be as hard. I've been giving it some thought and I am going to tough it out for as long as I can before undergoing another surgery. 

Friday, March 7, 2014

a GI appointment...

I went to see my GI the other week. The appointment was very beneficial and productive. During the appointment, we discussed the success of the Botox injections that I received back in December to help  reduce my stomach spasms. Last fall I started experiencing these painful yet nauseating colon spasms. When this first started happening, I could not figure out what was going on. Is it even possible to have pain in the remaining eight inches of colon that I have when it isn't even hooked up to my digestive tract. Very, very strange. After speaking with my surgeon and GI doctor several times since then, the colon spasms haven't stopped. It is just something patients sometimes experience after having the type of colon surgery that I had. However they are so random. I never know when they are going to happen or where. I was once in the grocery store and it was so bad I honestly thought that I was going to have to just leave my cart in the middle of the store and walk out. At this last appointment, my GI gave me something to help with the spasms. Hopefully the is new medication will help during those unpleasant times.

Another thing we talked about during my appointment was my weight. Fully clothed, I weighed in at 85lbs. My GI expressed his concerns and dislike about my weight which I fully understand. This brought us to my clean out routine and "future plans". He explained that he did not want to remove any of my small intestines. We discussed my current routine and my small intestines decline in motility just like with my colon. As for now, I am to continue clean out as is doing it three times a week. As time progresses, we will up the medications as we see fit. If my Linzess stops being as effective as it is now, we will substitute it for another medication in hopes to buy me some time. The whole overall goal for me is to not max myself out medication. He did explain to me that when the time comes, we can do a feeding tube which would be placed into my small intestines for additional nutrition and possible weight stability. I am sure my facial expression was not the best when I heard that but I'm a determined and stubborn person. I am not interested in having a feeding tube. I have enough going on below my rib cage. I do however know from experience, that once you get to a certain point and you're so sick, you'll do just about anything to feel better.

This is taken almost a week after my colectomy. It was bad.

These were taken the morning and afternoon of my ileostomy surgery. I made Jacob take these pictures so I could look back and visually see how bad it was. Over time, you sometimes lose perspective and forget how an experience actually was. The morning of my ileostomy surgery, I couldn't move without vomiting. I couldn't move my hands and feet. I have never been so sick in my life than what is depicted in these two pictures. During those hospital stays and just being so sick, my fears and perspectives changed. You could have pretty much done whatever to me medically because I was so sick. Situations like these are what my GI and I are trying to avoid. If that time does come, I want to already have somewhat of a plan in place so I am not sick as a dog and having to make a life altering decision.

Since Jacob and I have been married, I have done really well during my clean outs at night. I have only blacked out, no passing out. Our bathroom is separate from our bedroom so I have always wondered if he would hear me if I was to pass out in the bathroom. I have to sleep with the fan going so I don't get hot and I am honestly not waking him up every time I get up during the night. To me, it's ridiculous. Well Wednesday night during my clean out, I got up to go to the bathroom and I had to sit in the floor to finish cleaning my bag. Looking back now because hind sight is always twenty-twenty, I should have known I was in trouble. I got up to wash my hands and I just got that feeling. I thought to myself that I'd better get back to the bedroom. I made it about two steps into our bedroom and I passed out cold. I think my head hit the door before hitting the hardwood floors because it was throbbing. My left side took the blunt of it. It took me a few minutes to get my bearings back. Needless to say, Jacob had no problem hearing me and I'm pretty sore from all of it.

Thursday, February 13, 2014

GP related dental problems...

As we all know, I absolutely hate going to the dentist. I don't know what it is about the dentist that bothers me so badly but it does. I get so anxious over going to the dentist. It completely rattles me. I honestly would rather go through a medical procedure or test than go to the dentist. It's that bad. Since it was time for my routine cleaning, I switched to my husband's dentist. I was really impressed with his mannerism as a dentist and how professional yet comfortable the office environment was. I knew going in that I would have some dental issues. Before my GP diagnosis, I never had any dental issues however that is no longer the story.

After doing a set of dental x-rays and having my teeth examined, we talked about my current dental situation. I had seven new cavities. I was shocked at the number and frustrated at my body but yet I was relieved. This wasn't an organ conversation. My dental situation wasn't good but it could have been much worse. My dentist explained to me that my GP had caused some deterioration to my teeth and that was the cause of my cavities. Over the years between having acid reflux, being malnourished and receiving inadequate nutrition, this was the result. My dental issues are those of someone who is much older and doesn't take care of their teeth. I on the other hand am fairly young and am consistent in with my oral hygiene. Ever since I have started cleaning out, I have always wondered what damage had the four hundred plus bottles of magnesium citrate done to my teeth. If it can stain concrete, what was it doing to my teeth? Believe it or not, my dentist explained to me that the magnesium citrate hadn't harmed my teeth. If anything, it had helped as a wash to remove any acid that may have been left in my mouth.

My goal now is to protect my remaining teeth. Over the past few weeks, I have had to go back to the office three times to have my cavities filled. It hasn't been the happiest experience but I got through it. We have created a dental plan for me in hopes to preserve what is left in my mouth. My dentist has definitely went above and beyond going through my medications and diet looking for possible contributors to future cavities as well as each acid and pH levels of the liquids that I intake. I completely understand that this is just part of having GP. It is what it is. Life isn't always fair and we have to make the best out of it. 

I go this coming Wednesday to meet with my GI doctor. It should be an interesting visit. I have a lot of questions for him regarding my future and its possibilities. We will be talking about the decreased motility of my small intestines and how the GP has effected it. Jacob and I were talking earlier this week about my clean out medications/routine. I am planning on increasing my clean outs to three times a week verses two in an attempt to give my GI tract a break and some additional help on the motility side. In our conversation we were discussing how far and frequent will these clean outs become. It is odd but I find some bit of comfort in knowing that I have already lost my colon to my GP. Losing the function of my small intestines should be fairly similar and that comforts me. I have been through it once, I can do it again. However this time around, I feel better prepared mentally and feel that I can be a better advocate for myself since I have an idea of what I am getting into. I explained to Jacob that I do not plan on going but so far in my clean out medication dosages as well as the frequency of them. Three times a week is my maximum. Over time for me personally, when taking so many laxative and prep medications, I begin to feel toxic. It is an odd feeling to explain. I get to where I have trouble maintaining a regular sleep schedule due to the clean outs. Cleaning out multiples times a week physically wears on you and takes its toll. This time around before things become so intense, I want to have a plan or at least an idea for what my next move is medically. 
Image from:

Thursday, January 16, 2014

a really important ostomy lesson...

I learned a really important lesson Tuesday, fingers do not belong inside your stoma. The whole thing started on Sunday. I had had massive clean out on Friday that left me extremely weak so I actually skipped my Linzess Saturday morning. I didn't want to further dehydrate myself and just add to my weakness so I just skipped it. When I woke up Sunday morning, I realized that it probably wasn't a good idea to have missed a day because today I'd be making up for it in the long run. Sunday mornings are pretty rough for me. This Sunday, I knew church wasn't going to be a possibility. I took my Linzess and it didn't take long before things started moving. I ended up having to change my ostomy bag and wafer three times on Sunday. It was horrible. My skin was so irritate. While I was trying to change it, I couldn't get the area around my stoma clean due to my clean out that was taking place. With a stoma, you have no control of your output. I eventually got tired of dealing with it and just put my finger in my stoma like my surgeon had done before. I was hoping to temporarily stop my output long enough to clean the area around my stoma so I could prep the skin to apply my wafer and bag. Believe it or not, it actually worked. (I'm not a doctor and I'm not recommending this.)

Late Tuesday afternoon, I was mid clean out. I had just went to empty my ostomy bag and I looked down and my bag was empty but I still had a stream of output flowing into the toilet. I was quite furious. I had tip toed around since Sunday afternoon babying my ostomy in an attempt to not irritate my skin further and goodness knows not break the seal of that wafer. I got all of my ostomy supplies out that I needed in order to change my bag and wafer and called Jacob. I would definitely need his help. My plan was to do the same thing as Sunday, use my finger to temporarily stop my output and clean the area around my stoma as quickly as possible. Jacob ask me not to do that but didn't listen. On my second attempt at trying to get the area clean, when I went to pull my finger out of my stoma, my stoma never came out. I had accidentally pushed my stoma in. To better explain this, it was kind of like when you have a shirt sleeve inside out. It felt so awkward. I was concern of what type of damage I might had caused and would the output back up internally causing a blockage. Of course by then it was after hours, so I called my GI doctor and spoke with the on call doctor who transferred me to general surgery. Luckily I did no harm to myself. In time my stoma would push itself back out. I just needed to watch for any color change.

I learned a really important lesson. If possible, I need to attempt to keep my fingers out of my stoma. For those of you who are wondering, yes, I am constantly washing my hands and practicing good, clean sterile techniques.

Thursday, January 9, 2014

the effects of GP and a cold....

In December I went to have another endoscopy where my GI doctor stretched my pylorus, the part where my stomach and small intestines meet. While he was in there, he administered some Botox injections to help stop the spasms that I had been experiencing for quite some time. Before the procedure, I got a chance to talk to him about my clean outs. Over the past few months, my clean outs have just become more difficult and less effective than when I first started back cleaning out after my ileostomy surgery. We had discussed the week before over the phone my concerns regarding this. I am currently half way maxed out on my cleaning out routine (medication wise) and it has only been since April since I had my surgery. It isn't looking good considering how quickly I've had to increase my dosages. Originally when I started cleaning out, I "planned" on stretching the increase in dosages way out, however this hasn't been the case. At the rate I am going, I am going to be maxed out before too long. I explained my concerns to my GI and asked him why this was happening and what in the world was I going to do even though I know that it is unrealistic to ask that because that is something that we will deal with when we get there. We just deal with today and take it a day at a time.

We came up with a plan of increasing my Linzess on the days I clean out. On those clean out days, in the mid-afternoon, I will take an additional Linzess and use it as a "push". This will help give me a better clean out and buy me some time without having to increase my clean out medications. The downfall is that I am already on a higher dose of that medication and it is expensive. My insurance doesn't want to pay for the additional medication. If we can't come to some type of middle ground, there are several similar medications that we can try. Overall, I do feel like I have a little bit of room to experiment with those medications and buy myself some time. That gives me some comfort and relief. However the whole reason I am dealing with this is because my small intestines are doing the same time my colon did. I am losing the function of them. A few years ago when I found out my colon was losing its function, I had a test done. I found out that my small intestines were fifty percent slower than the average person. I just assumed that since they were already slow, they'd eventually get slower and that's what I am dealing with today. It is kind of weird, it bothered me at first because I've already been through this with my colon. I really didn't want to go through it again. But then, the more I have really thought about it, I'm fine with it. God isn't going to give me more than I can deal with. I have been through this before. I can do this again. I do hate it for my husband and family. It isn't fair for them. I have learned something though from working with my previous job and I will never forget this. Regardless of my medical situation, I live in a place where I have access to medical care. I don't have to travel for days on foot or wait for a doctor to come. I have clean water and clean supplies to take care of my ostomy. I am extremely blessed.

As I have stated before, I am stubborn and I think I can do whatever I want whenever I please. My GI has tried to explain to me as well as my family that I am not normal. My immune system is not strong. I believe around seventy percent of your immune system is in your intestines. This makes me more susceptible to illnesses as you can imagine.

It was the weekend before Christmas. I had been feeling really well and went out to run a few errands. That night I started feeling funny. I just assumed it was a GP flare up since those can range in feelings with me. I was wrong. It turned out to be a cold and I can't stand having a cold. I made a horrible mistake and tried to clean out the following day. It only made me feel worse because it wasn't an effective clean out and it left me feeling miserable and weaker. I didn't hardly leave the couch that weekend. On Monday, I felt somewhat better so I assumed that I was getting better. Wrong. Tuesday, that being Christmas Eve, I was determined to feel good. I was trying to do things around the house and of course for the holidays but I could not breathe. It was as if I couldn't get enough air because I didn't have enough energy and of course I'm trying to do stuff. I should have been resting but of course, I wouldn't listen. We were suppose to leave Thursday morning to go on vacation so I needed to clean out Christmas day. I had no idea how I would be able to physically do it. I had this fear that I wouldn't be able to move Thursday morning from my clean out due to being so weak.

I woke up Christmas morning feeling pretty rough. I got the majority of my clean out medicine down without losing it. I promised Jacob that I'd never clean out again on Christmas. I knew that day would be horrible. We went to both of our parents' houses for Christmas. I wasn't missing the festivities. My nausea was through the roof. I know I took more than the recommended dose that day. It was kind of like a catch twenty-two. It had to keep myself hydrated to avoid a migraine but the liquids made me so nauseous. What do you do? That night at my parents, I was so nauseous and out of breath, I could bearly move. I still hadn't packed for vacation. When we got home, Jacob said that he'd do it for me but I'm all about control (one of my downfalls). I don't know how but I got myself packed and ready to go. I did a lot of praying that day.

The next morning when I woke up, I was so weak I couldn't shower. I shower every day regardless. I was in the bathroom and nearly passed out. At that point, Jacob insisted that we go to urgent care. Normally, I would bulk him and insist that we wait a while and see if things get better. However I listened and made my way to the car. I was so weak and unable to breathe, I wondered if I'd make to the car. We got to urgent care and waited for hours. I have never felt so bad in my life except for the day of my ileostomy surgery. I felt the very same minus the vomiting. The PA that saw me told me that if she would have saw me in the ER, she would have been doing a work up for sepsis. I felt real good about then (just kidding). She referred me to the local ER. There was no way I was riding to the hospital I normally go to. She believed that it was just a cold but I needed to have fluids, lab work and x-rays. When we got to the ER, they took me back within minutes. The ER doctor wanted to check to make sure I didn't have blood clot in my lungs. My labs and x-rays came back normal. It turned out to just be a cold. He explained to me that with my immune system combined with my GP, it was just more than my system could handle. I was really shocked. If a cold did this to me, what would the flu do? Needless to say, I'm pretty scared of a cold. I got on the scales a few days later to weigh and my weight had dropped to 84lbs. Since then, I have been really careful.