So I have been taking Pentasa for 2.5 months. It's extremely costly for me, but it has put me into a stable state along with my Remicade. I thought ok I can spare the expense if it means that I will be able to live a semi-normal life in regards to health. In the past 7-10 days however, I have noticed that I have hives, headaches, and frequent urination.
The other night I jumped to the Internet in an unrelated search to find, if any, long term effects of Pentasa, and make sure that there wasn't a trade-off to being in Crohn's remission now and have something like liver failure later as a result of the medicine. What I found was that there isn't a long term trade-off to Pentasa, which calmed that nerve, but what I read irritated another. My symptoms that I have noticed may be side effects to Pentasa. If this is the case I'm left asking myself "now what." I've been on so many medicines prior to surgery, and after surgery I struggled to get my Crohn's under control. So now my Crohn's is under control, but my body doesn't like the medicine I am taking...Enter a sarcastic "AWESOME" here.
According to http://www.drugs.com/pentasa.html, http://treato.com/Pentasa,Frequent+Urination/?a=s, and http://www.gihealth.com/html/education/drugs/pentasa.html these websites list side effects and potential causes of the said side effects. The first thing that I read was the importance of taking Pentasa as prescribed. I'm sure you are thinking "well DUH," but I've mentioned before my issue with taking medicine. I was able to swallow the pills whole for about 2 months. I then resorted to just swallowing the contents inside the capsules. I learned that Pentasa is a timed release formula and the capsule along with the granules inside are designed so that Pentasa releases it's medicine into the intestine, where our issues of inflammation with Crohn's relies. Even though I have been taking the medicine improperly for the last month or less I have not had any flare related issues. I have just been experiencing frequent urination and my bladder is always full each time, wicked headaches that I put on the low side of a migraine, and hives that are itchy....combined this is all very irritating.
Now I am taking the pills as prescribed for the 2nd day in a row. I still have all side effects, and the headache is unbearable at times. I've determined to continue taking the medicine for a total of 4 days as prescribed originally to see if there is any subsiding of side effects. If there isn't any progress then I shall call my doctor, and make an appointment to discuss the experiences I am having with Pentasa.
I am nervous about what medicine is next. My gastro tried to prescribe Cipro and Flagyl prior to Pentasa, but I had to take those both after surgery and I puked trying to take the two. When I did get Cipro and Flagyl down I was nauseous through out the whole day. So I'd be less than thrilled to take those again.
I've been discussing all natural medicines with my friend Tori, and at the start of next week I should have them to take. 1 of them is for controlling my anemia, and raising my iron intake levels. The other is to help repair the intestinal tract that has been damaged due to Crohn's. If I'm going to become allergic to Pentasa then I hope that the 2nd medicine could potentially substitute Pentasa, and work with my Remicade infusions.
The life of a Crohn's Casualty is always so medically interesting. I'm getting extremely tired of this non-constant life. I wish for everyone a splendid week.
Take Care!
Showing posts with label Pentasa. Show all posts
Showing posts with label Pentasa. Show all posts
Tuesday, June 11, 2013
Wednesday, May 8, 2013
Long time, no posts & Final to my surgery
Sorry about not posting for quite some time, but I have been rather busy. So I want to start with saying that I am doing and feeling great! This is a drastic change from 10 days before my last post. Before surgery for approx. 2 months I had been feeling awful, and then my surgery nightmare, and post recovery were not too well for me on the health field. Well that all has changed...Pentasa + Remicade = My great feeling/mood. My body is finally starting to repair itself, and the major sign of that was my period came back. I'm sure plenty of women would love for their period to disappear for a month or 2, but I know that I'm really not doing well health wise when it does. So for now I am grateful for its return. Before my doctor and I had this figured out this combination I was finding it rather difficult to be up beat about life in general. I've always tried to maintain a positive attitude, and think I put on a good front for those people who I wouldn't consider extremely close (mom & boyfriend). Extremely close people get to listen to me gripe, cry, whine, complain about crohn's and how I feel that day. I've missed about 50 days of work in the past 7 months because of my illness...fortunately I co-own a housekeeping business and my partners have been very understanding and picked up my slack. So quick recap, I'm feeling great and everyone is noticing, which must mean I'm a grump butt when I don't feel well.
Rowan Atkinson is hilarious. Whenever I write a new blog I start up Netflix and choose a movie at random from the different categories. Today I chose Mr. Bean's Holiday, and I'm enjoying it and becoming distracted by it.
Now I'm going to finish telling everyone about my terrible surgery experience. I had told you about my drainage bags, and how my intestines didn't heal to one another for a few months after surgery, and my surgeon discussed possibly going back in for a colostomy.
Well I was in my hospital bed and my surgeon came in and said my drainage levels were finally stabling, and if all went well I could go home on Monday, which was 1 day away. So I was feeling great even with my lack of sleep, and my boyfriend was there. We were watching Food Network because I'm a glutton for punishment, and it was 9:30am from what I remember. My mom had just texted me saying she would be in to see me later that day because she hadn't had much rest either. I never even had a chance to respond because the next thing I remember my heart felt like it was racing, and my breathing became abnormal. I told my boyfriend that I didn't feel good & thought I may puke; he handed me my bucket that was at my bedside table and I grabbed on to it just waiting. The next thing I knew my vision started to go in and out, and I told Seth, my boyfriend, that I couldn't see and then my muscle control went. My head dropped down, the bucket fell from my arms and my vision was gone entirely. After that I only remember that I was trying to tell Seth to call my mom, but I couldn't say anything. At this point in my mind I started freaking out, I couldn't see, move, or speak. Then I sort of blacked out, and the next thing I remember is a nurse asking me how many fingers she was holding up. I was panicked because I still couldn't see, but my speech had returned. She proceeded to ask me about my sight, and I told her that it looked like an old television screen all black and white little squares. She then asked me to squeeze her fingers with each hand, make a fist and push against her hands. My vision restored itself. She moved to my legs, and asked me to do the same but with my feet. I tried with all my might to move my left leg, but couldn't. My leg was numb from the knee down. I was stable though, and my heart and breathing had returned to normal. After 3 hours my left leg returned with full capabilities. My boyfriend told me that 5 nurses had rushed in after he had left the room to grab someone when I slumped over in the chair. They hoisted me up on the bed, and when they had done so they opened one of my Hickman ports, and I began to bleed out as well. I was then informed that it was suspected that I had a TIA /Mini-Stroke and Pulmonary Embolism. I had to stay in the hospital for an additional 6 days after my stroke to make sure that it didn't happen again, and I had to be cleared from neurology, cardiology, and gastroenterology. This sucked! My brain scan came back clean, but my heart scan showed I had a tiny hole in my heart. My cardiologist would not fix the hole unless I have or had another stroke or another heart complication. So this means that I will be on a low-dose aspirin regiment the rest of my life. I am so very grateful that I had no residual damage from my stroke, but it makes it hard explaining to new doctors what happened because they expect something to be wrong with me. I do believe that from my stroke my depth perception is off because I have noticed that I seem to bump my head a lot more than I use to. It's almost like I lose sight of things and a concept of how far away they are like when I lean over or into things. I understand that sounds so weird, but has anyone else experienced anything like this?
But there you have it, My whole hospital surgery story, and let's hope when I have to have gastro surgery again that it goes better than my first. The reason I say when is because my surgeon already said I will need to come back in 5 years time for my other infected portions, but I currently feel great. My current medicine list is as follows;
*Remicade every 6 weeks
* Pentasa 8 pills every day
* Iron supplement 1 every other day
* 81mg Aspirin 1 every day
* Multivitamin 1 every day
* Metamucil as needed
Total count of pills in a day = 12
Well I hope to get into some structured schedule for writing this blog, but with this nice weather I don't know how likely that is to happen. Please stay tuned for more on my life of being a crohn's casualty.
Rowan Atkinson is hilarious. Whenever I write a new blog I start up Netflix and choose a movie at random from the different categories. Today I chose Mr. Bean's Holiday, and I'm enjoying it and becoming distracted by it.
Now I'm going to finish telling everyone about my terrible surgery experience. I had told you about my drainage bags, and how my intestines didn't heal to one another for a few months after surgery, and my surgeon discussed possibly going back in for a colostomy.
Well I was in my hospital bed and my surgeon came in and said my drainage levels were finally stabling, and if all went well I could go home on Monday, which was 1 day away. So I was feeling great even with my lack of sleep, and my boyfriend was there. We were watching Food Network because I'm a glutton for punishment, and it was 9:30am from what I remember. My mom had just texted me saying she would be in to see me later that day because she hadn't had much rest either. I never even had a chance to respond because the next thing I remember my heart felt like it was racing, and my breathing became abnormal. I told my boyfriend that I didn't feel good & thought I may puke; he handed me my bucket that was at my bedside table and I grabbed on to it just waiting. The next thing I knew my vision started to go in and out, and I told Seth, my boyfriend, that I couldn't see and then my muscle control went. My head dropped down, the bucket fell from my arms and my vision was gone entirely. After that I only remember that I was trying to tell Seth to call my mom, but I couldn't say anything. At this point in my mind I started freaking out, I couldn't see, move, or speak. Then I sort of blacked out, and the next thing I remember is a nurse asking me how many fingers she was holding up. I was panicked because I still couldn't see, but my speech had returned. She proceeded to ask me about my sight, and I told her that it looked like an old television screen all black and white little squares. She then asked me to squeeze her fingers with each hand, make a fist and push against her hands. My vision restored itself. She moved to my legs, and asked me to do the same but with my feet. I tried with all my might to move my left leg, but couldn't. My leg was numb from the knee down. I was stable though, and my heart and breathing had returned to normal. After 3 hours my left leg returned with full capabilities. My boyfriend told me that 5 nurses had rushed in after he had left the room to grab someone when I slumped over in the chair. They hoisted me up on the bed, and when they had done so they opened one of my Hickman ports, and I began to bleed out as well. I was then informed that it was suspected that I had a TIA /Mini-Stroke and Pulmonary Embolism. I had to stay in the hospital for an additional 6 days after my stroke to make sure that it didn't happen again, and I had to be cleared from neurology, cardiology, and gastroenterology. This sucked! My brain scan came back clean, but my heart scan showed I had a tiny hole in my heart. My cardiologist would not fix the hole unless I have or had another stroke or another heart complication. So this means that I will be on a low-dose aspirin regiment the rest of my life. I am so very grateful that I had no residual damage from my stroke, but it makes it hard explaining to new doctors what happened because they expect something to be wrong with me. I do believe that from my stroke my depth perception is off because I have noticed that I seem to bump my head a lot more than I use to. It's almost like I lose sight of things and a concept of how far away they are like when I lean over or into things. I understand that sounds so weird, but has anyone else experienced anything like this?
But there you have it, My whole hospital surgery story, and let's hope when I have to have gastro surgery again that it goes better than my first. The reason I say when is because my surgeon already said I will need to come back in 5 years time for my other infected portions, but I currently feel great. My current medicine list is as follows;
*Remicade every 6 weeks
* Pentasa 8 pills every day
* Iron supplement 1 every other day
* 81mg Aspirin 1 every day
* Multivitamin 1 every day
* Metamucil as needed
Total count of pills in a day = 12
Well I hope to get into some structured schedule for writing this blog, but with this nice weather I don't know how likely that is to happen. Please stay tuned for more on my life of being a crohn's casualty.
Monday, April 15, 2013
Day to Day
Good Evening readers! I'm finding that when I want to write I don't. So I apologize for inconsistency in my posts, but hope that you enjoy my posts when they do pop up. The weather in upstate is finally warm, today we hit 70 and I loved every minute of it. This weekend I finally got a massage appointment, and it helped my neck a little but I still don't have full range in turning my neck so I see a Chiropractor tomorrow afternoon. I'll be so grateful when I can look to my sides without turning my whole body.
Last week I went back to my gastro doctor because I have been having issues while being on Remicade. He had placed me on Pentasa (3 weeks ago) to work with the Remicade, but I have been seeing him every 2 weeks to see if I get any better or not. Well when I went 2 weeks ago I felt awful, and he ordered all these tests to be ran to see how my body was coping with the Remicade. When I went back on Friday I felt great so he canceled 2 of my tests. But I go for an infusion this Thursday, and since having surgery I haven't found a solid non-flare-up-time (made up word). I receive my infusion and am great until about the 10th day after infusion, but then I get so sick with a flare-up for 7 days. It's hell and I have been missing a solid week worth of work during this time because my flare-up is so bad; I end up with fevers, mouth sores, diarrhea, and abdominal pain. After day 6 going into day 7 of being sick I begin to feel better. Then the flare-up begins to subside, and I spend about 5 days feeling BLAH, not really sick but not feeling well either. After that the flare-up subsides, and I feel fine then I get another infusion and repeat cycle. I have an infusion every 6 weeks due to the severity of my Crohn's, but since surgery I don't seem to be doing as well, but this infusion is the 1st one that I've been on Pentasa for so we will see how I fair. I'm hoping no more weird flare-up in between so I can have some normalcy in my life. Plus my BFF's wedding is day 9 after infusion, and I really need to be feeling great on that day. I have responsibilities as a bridesmaid plus I don't want to disappoint her by being a party-pooper cause of my Crohn's, but I know she is understanding.
So my doctor and I have an appointment 8 days after my infusion to monitor how I am doing, and I have to have blood drawn before the appointment so they can see how the remicade is reacting with my body. If I am sick when I go to this appointment, he will schedule me for an intestinal CT scan, and possibly a specific blood test to see if I am developing an allergic reaction to Remicade. I really hope this isn't the case because what I've seen my medical options are severely limited, and I've almost completely ruled out Humira since I don't want myself or family injecting me. Anyone been on or still on Humira? What have you experienced? Am I being a big chicken? Help a girl out, please.
Another reason why my boyfriend is the one and how I knew. Let's face it fellow Crohnies we do not always get the choice about our gas, and it's not always sunshine, rainbows, and a bed of tulips. Dating means that you still don't do certain things in front of one another or at least you're not suppose to. I can definitely admit I was the first one to fart in this relationship, but once I did we crossed a bridge and haven't looked back. Although the first one I let rip was on accident, and really rancid....I was so embarrassed I wanted to cry. We were leaving our mall and walking to the truck, and I was having a flare-up and let one slip while walking and thought OK it will air out before we get to the vehicle, and no biggie. Boy was I wrong...it smelt the whole truck up he rolled down the windows, and I just apologized profusely. He was so sweet...he said everyone does it, who cares, but are OK? We can head home, we don't have to go to X (I don't remember where we were headed). Don't get me wrong I was still terrified, but he did calm me down a little, and at least made me feel as though he didn't mind although I'm sure he did. Heck, even I wanted to hang my head out the window like pooches do. He's so understanding, and has been since day 1. I love him dearly, and am so appreciative that he loves me for me (Crohn's and all)
I know I still have to write about what happened at the hospital, and I am trying to work up the courage to. It's one of those moments that was so personally scary that talking about it is difficult. Please bear with me...I will tell you what happened, but I also want to keep everyone updated on what's going on with me currently. Until next time, Take care.
Last week I went back to my gastro doctor because I have been having issues while being on Remicade. He had placed me on Pentasa (3 weeks ago) to work with the Remicade, but I have been seeing him every 2 weeks to see if I get any better or not. Well when I went 2 weeks ago I felt awful, and he ordered all these tests to be ran to see how my body was coping with the Remicade. When I went back on Friday I felt great so he canceled 2 of my tests. But I go for an infusion this Thursday, and since having surgery I haven't found a solid non-flare-up-time (made up word). I receive my infusion and am great until about the 10th day after infusion, but then I get so sick with a flare-up for 7 days. It's hell and I have been missing a solid week worth of work during this time because my flare-up is so bad; I end up with fevers, mouth sores, diarrhea, and abdominal pain. After day 6 going into day 7 of being sick I begin to feel better. Then the flare-up begins to subside, and I spend about 5 days feeling BLAH, not really sick but not feeling well either. After that the flare-up subsides, and I feel fine then I get another infusion and repeat cycle. I have an infusion every 6 weeks due to the severity of my Crohn's, but since surgery I don't seem to be doing as well, but this infusion is the 1st one that I've been on Pentasa for so we will see how I fair. I'm hoping no more weird flare-up in between so I can have some normalcy in my life. Plus my BFF's wedding is day 9 after infusion, and I really need to be feeling great on that day. I have responsibilities as a bridesmaid plus I don't want to disappoint her by being a party-pooper cause of my Crohn's, but I know she is understanding.
So my doctor and I have an appointment 8 days after my infusion to monitor how I am doing, and I have to have blood drawn before the appointment so they can see how the remicade is reacting with my body. If I am sick when I go to this appointment, he will schedule me for an intestinal CT scan, and possibly a specific blood test to see if I am developing an allergic reaction to Remicade. I really hope this isn't the case because what I've seen my medical options are severely limited, and I've almost completely ruled out Humira since I don't want myself or family injecting me. Anyone been on or still on Humira? What have you experienced? Am I being a big chicken? Help a girl out, please.
Another reason why my boyfriend is the one and how I knew. Let's face it fellow Crohnies we do not always get the choice about our gas, and it's not always sunshine, rainbows, and a bed of tulips. Dating means that you still don't do certain things in front of one another or at least you're not suppose to. I can definitely admit I was the first one to fart in this relationship, but once I did we crossed a bridge and haven't looked back. Although the first one I let rip was on accident, and really rancid....I was so embarrassed I wanted to cry. We were leaving our mall and walking to the truck, and I was having a flare-up and let one slip while walking and thought OK it will air out before we get to the vehicle, and no biggie. Boy was I wrong...it smelt the whole truck up he rolled down the windows, and I just apologized profusely. He was so sweet...he said everyone does it, who cares, but are OK? We can head home, we don't have to go to X (I don't remember where we were headed). Don't get me wrong I was still terrified, but he did calm me down a little, and at least made me feel as though he didn't mind although I'm sure he did. Heck, even I wanted to hang my head out the window like pooches do. He's so understanding, and has been since day 1. I love him dearly, and am so appreciative that he loves me for me (Crohn's and all)
I know I still have to write about what happened at the hospital, and I am trying to work up the courage to. It's one of those moments that was so personally scary that talking about it is difficult. Please bear with me...I will tell you what happened, but I also want to keep everyone updated on what's going on with me currently. Until next time, Take care.
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