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.

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.

stress...

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?