Im sorry its been awhile since ive said anything. So not sure if anyone has read my last post but i finally got off the prednisone, have been off of it for about a month a little over a month. So starting last week i was having a hard time getting my output to thicken up so i called my Dr. to see what he thought i should do. He had me do a test for CDiff and something else and if they came back negative then i was looking at needing another scope done. Well the results were negative so scope it was. Not fantastic news i guess you can say. Dr.smith thinks the cimzia shots are working but the scope showed inflammation in the lining of my pouch but the rest was pouchitis again. He's putting me on Cipro again. And he wants to have a sit down with dr.behm and hedrick to see if we should do the take down or go with the permanent stoma because of how many times the inflammation and pouchitis has reoccurred. Then he changed me from cipro to flagual which that didnt work it made me get sick so they want to wait till my shots on monday to see if it improves it. Then Dr.smith calls me this morning to tell me about my biopsies, they came back and my small intestine is inflamed and so he is now saying I have Crohn's. So he wants me to do this test called sedway to check the levels of cimzia to find out if I need to get the shots sooner or a higher dose . And to check to see if I have antibodies to it. He still wants to schedule a sit down with mckenzie and i. He did tell me Dr.hedrick was talking she does want to remove the pouch but I guess we have to wait and see for the sit down. I did ask if I have built up antibodies he said we would switch to a different medicine because of the Crohn's even if they removed the pouch. So thats everything so far when i get more to know ill inform everyone. HAPPY FRIDAY!, enjoy this wonderful weather and have a great weekend!
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Well here's to a closing to 2017 and all of its chaos. Looking back on this year a lot has happened. We moved into our house, celebrated two years of marriage, gained two fur babies, made some great memories with friends and family, started a new job, got back into school. Its taking a moment like this to look back and realize even with everything that goes on with my health, all the hospital visits and doctor appointments and everything that is so uncertain for the time being how truly blessed ive been this past year, everything weve gained. Alright 2018 hit me with your best shot!
Since its Crohns and Colitis Awareness Week December 1-7 it only seemed fitting to make a health update post since I guess you can say pretty interesting stuff has been going on.
So over the last couple of days I've been experience bleeding out of my bottom which I think we can all say that's not normal. So I got in contact with my doctor well doctors and he had me get blood work done and the second dosage of my cimzia shots. My blood work came back and my levels looked great and I felt fine ( I know right I say im bleeding and I feel fine ) so my doctor summed it up to inflammation and basically me needing the second dose when I did but I had to monitor the bleeding in case it got worse or i started to feel bad ( dizzy , lightheaded) . I had hope that maybe he was right the blood started to lighten up coming from my bottom but of course then I started to get blood in my bag , which I've never had happen before and then the blood coming from my bottom started to pick back up again . So when I called to see what he wanted me to do because I still felt fine just really concerned of why I was bleeding . So he had me come in and they did another flex sig and my pouch was worse than the last flex sig about three weeks ago . Side tracked real quick this is where they also tell me that I am a rare case they have never seen before and they have no stats or anything to compare my stuff with . ok continuing on ... So yes my pouch is still inflamed they cant decide if its Crohns or a autoimmune infection which both they would treat with cimzia . So there overall plan is to get me out to 12 weeks on the cimzia and stay on a high dose of 40 mg of prednisone until then but with my history my doctor doesn't believe I will make it out to 12 weeks and if I come in sooner for worsening of bleeding or my symptoms worsen then im looking at the pouch removed and I get a permanent stoma. Sounds like a interesting last couple of days right ? Like I've been saying all along just call me that unlucky 1% Oh so the bleeding out of my bottom is due to inflammation and the blood in my bag they believe is blood coming from my pouch into my bag because everything above still looks really healthy no inflammation or blood. So as I said when I find out more I would let everyone know. But first let me start with a little more information since my last post didn't fill everyone in too much.
So last week i wasn't feeling good at all i had cramping, headaches, could hardly eat because i felt so nauseated, i've lost weight, i was dizzy , short of breath, and had a little chest pain. Pretty sure i've covered just about all of it. So i tried calling my doctor not realizing that the clinic was closed and when i spoke with someone they told me i had to wait till monday so i did. They said i needed to go to the ER . As i said before they did there tests on blood, urine, and stool ( Blessed yet again for the stool coming back negative for C-Diff ). They did there Flexsig where they went through my stoma with a camera and the upper part of my intestine looked really good they said but the lower half was really inflamed. Of course im just that 1% that would throw the doctors a curve ball because they have no idea why it is inflamed. So they ran some test and because its been going on for so long there saying my lower half is crohn's. So then the husband and i were given three options they could do the full take down and hook me up and take a chance that it could go away but they didn't recommend it because it could make me worse and make it like the beginning, choice two was start a medication called Cimzia see if it gets rid of it and then have a chance of the full hook up, choice three was go with surgery and remove the J-pouch and it gets rid of the crohn's and cures the situation and give me a permanent stoma but then there can be a chance of crohn's starting in the upper half which they would treat with medication if that happened and if i want to try for the full connection in 5-10 years i wouldn't be able to. So thankfully the doctors and us are all on the same page were gonna try the medication first which i should be starting in a week or two and if it fails then im going to get the surgery . Doctors say that i should notice improvement within a week let pray that's the case. I also get to go home today. Now that i think i've covered everything in a little more details does anyone have any questions . Well in case no one saw it we are at it again can we just say oh UVA how i've missed you not ...
So last week i wasn't feeling good at all so i gave it till monday to call my doctor to see if i needed to come into the ER for symptoms of dehydration. So i got here and they did their usual blood tests. They also did a flexsig and MRI. So my results showed that i now have crohns in my lower half and of course i would get it right because no one can explain why or how it happened. So it looks like there going to be starting me on cimzia and hope that works if it doesn't then im looking at a surgery to undo everything and get a permanent stoma.Ive currently have been in the hospital for about a week and hopefully will be getting out of here soon. ill keep everyone posted when i find out more. So its been awhile since ive blogged. So lets see if i can catch everyone up. My health, im finally off the prednisone and im feeling great, probably the best i have felt in a very long time . I am only on two medications now. The doctors want me to come back to get a MRI done to check my inflammation. If there isnt any thats great if not then im looking at a different course of treatment which will be infusions. Then im looking at another MRI if i have to do infusions to see if thats worked or not if not then at that point im looking at a permanent stoma. I have also started a job im working at a boarding facility , so i get to play and take care of doggies and everyone in the family is happy that i cant bring any home. Hubby and I also added a new addition to the house we got a fourth dog and our last dog for awhile we agreed . Her name is Hazel and shes a beagle. The dogs are great with her especially jake there just two peas in a pod. I am still doing crafts so please feel free to go check out my crafts page and see if theres anything that you like. If you would like something specific done please feel free to get in touch with me and i can see if its something i can do.
Hubby is finally out of the military and hes doing great. Im pretty sure i mentioned before how he broke his foot and thats all healed up now. Thank you to everyone who has still been checking in to see if i have posted anything i will try to get back in the swing of things and post again soon. again please check out my crafts page and let me know . So May is Crohns and Coitis Awareness Month but May 19 is World IBD Day. World IBD Day is a day where worldwide people come together in their fight against Crohns Disease and Ulcerative Colitis to show support, inform people, and help try to find a cure. You may have also seen that people wear purple or have a purple ribbon that represent Crohns and Ulcerative colitis.
There are many people out there who don't fully understand exactly what this disease is or how much it affects us and because of that we often hear the frustrating phrases " You Don't Look Sick" and "Its Just A Pooping Disease". That's the thing though, just because we don't look sick doesn't mean that everyday were not fighting something to do with this disease. No one knows the exact reason on how or why someone ends up with IBD, Doctors have so many theories out we wonder if their just throwing things out to see what sticks. Yes, with this disease you have many uncontrollable bowel movements but we also are affected in many other ways that can make this disease seem invisible. IBD can cause issues in the Eyes, Arthritis, Blood clots, Anemia, Neurological conditions (Seizures, Strokes, Headaches, Depression), Abdominal pain, Nausea, Night sweats, Weight loss, and Overwhelming Fatigue. There's also 60% of people who will experience some type of memory problems. People often will describe their symptoms as a flu-like infection that doesn't go away, have trouble sleeping and wake up stiff and achy where you have to push yourself just to get through the day. This disease is extremely unpredictable, it can be tolerable for months at a time then within days it leaves you physically and emotionally drained. Trying to explain to people how tired this disease can make you can be difficult because it can be hard to understand how does it make you so tired, how does it make you bed ridden most day. For most it can be so hard living with this disease they can't work, finish school, miss family things. Its not easy living with this disease and its not easy for the people around us like are family and friends who help us get through it all but having their support and love makes a big difference. Its knowing you have someone to lean on even on your worst days. I am blessed to have a big support system but I also know not everyone has a support system so if everyone can remember everyone is fighting a fight even if its not visible. So May is not only National Pet Month but it is Responsible Animal Guardian month, Pet Cancer Awareness month, Chip your Pet month, May 1 was National Purebred Dog Day , May 7 was Mayday for Mutts, May 7-13 is National Pet Week, May 8 was National Animal Disaster Preparedness Day So I'm not sure about everyone else but I'm enjoying this beautiful weather we've been having , yea we've had some rain too but after the rain it's absolutely beautiful. It's been so nice we've been able to accomplish quite a bit. We got the front walkway done. We also got our deck furniture and let me just say that was a story. We got the two chairs in my friend Alex's car along with the table and cushions but of course the love seat would have fit in my car if it didn't have the middle leg so needless to say we didn't get it in my car and my dad had to come to the rescue. The deck isn't finished yet but it is coming together very nicely, it's pretty much turned into my own personal paradise and I think the dogs are just soaking up this nice weather too. We got them a pool that they have been having fun with, and they have been loving being out on the deck. So my health here lately has been making me feel confused so I've been doing pretty good for the most part but I'm still getting pain and here recently it seems like it's picking back up to being kinda consistent. Yesterday I could barely move cause I was having so much pain and today I started the 15 mg of prednisone so we don't know if the pain I'm having is from doing to much or from me decreasing the prednisone still.
If you haven't checked it out yet I have some crafts that I've done up and some are in my closet because they only let me put so many up. Check it out and tell me what you think and share and tell anyone that you would like. Once some go and create some space I'll put some more up. So this is my question for everyone comment and tell me what has everyone done here recently with this nice weather? So April 30 was Adopt a Shelter Pet Day and now that it is may it is National Pet Month
This past weekend was beautiful had a great time at Annie's Family get together. Yesterday I finally got some plants and lights put in our walkway still have some work to be done but I think so far it looks really nice. We finally picked out our deck furniture so hopefully we will be getting that this weekend. In case no one saw on my last post but I finally got some crafts up so if your interested go take a look and tell your friends and anyone you know too! So im sorry I haven't said anything here lately been busy I guess you can say.
So for starters in case no one knew April 8th was National Dog Fighting Awareness Day, April 11th was National Pet Day, April 18th Pet Owners Independence Day, April 16-22 Animal Cruelty Awareness Week, and today April 26th National Kids and Pets Day. So as for things around the house its the usual cleaning but we did get the gazebo up on the deck now we need to just get the rest of the furniture for it but that will come in due time. We also got the trees in the front yard up by our walkway so we can plant the flowers, we still have a bit to do with the yard but so far its coming together nicely. The dogs are doing good, Jake is growing so much he has started to loose his puppy teeth. Now for anyone who has been following and reading my posts, I finally got my craft store up due to the package I choose I didn't realize only 10 products are available. So if things start to sell I will try to keep it updated with others that are not on my page. Hopefully it all works out pretty good, we shall see. Now a update on my health, so I finally finished the prednisone last week and when I did the first day off it my stomach pain came back and my stoma became inflamed, and I was throwing up. So we ended up going to the hospital and the interesting part is my blood work came back saying that I had no inflammation but my stoma was inflamed so that's the interesting part. They also tried to say that I rushed off the prednisone but yet when I was discharged from the hospital they stuck me back on prednisone and Im doing the same thing as before decreasing by 5mg each week. Once Im off it this time though they want to do a MRI. Also, they increased the dosage on my Gabapentin and the plus side there is I haven't had any pain so far so that's really nice. For anyone who hasn't seen it yet the Fate of the Furious was a really good movie and I definitely recommend going to see it. Something I haven't done in forever is bowling and the hubby and I went and we had a amazing time. Now here's something my husband broke his pinky toe, working out. How lovely is that. Thank goodness the blood flow is fine and the doctor said there isn't much they can do but tape it but he said the pressure hurt more taped then not taped. He's aloud to do any daily activities but he's suppose to be careful. |
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