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.

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.