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.

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.

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.

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:

http://images.wisegeek.com/dental-tools.jpg