- Joined
- Sep 28, 2011
- Messages
- 3
Hello my name is Danie I am 24 years old and was dinosed with Crohns 22 about 6 months after I had my gorgeous daughter. From the start I just had some sharp pains on my right side and went to my regular doctor to see what was going on and they thought it was maybe appendix, after being in the ER waiting for the results, the Doctor came in with paper in hand and asked me if I had ever heard or knew anyone with Crohns. I did not other either part. He says that what your CT is showing us. Here is some meds for your pain, you need to follow with a specialist, it’s a serious and that it has no rhyme reason or cure. And literally leaves the room. I had a good nurse who came hugged me told my husband, mom and father in law not to let me read the information on it tonight let me get rest because it is going to take a toll on me when it sinks in. We went home and she was right when I read about it I balled and my biggest fear was my daughter, what is the chances of her having to battle this too and how in the world am I supposed to be a good mom for her dealing with this horrible disease! Luckily I was raised a fighter not a quitter and my family keeps me going. Wonderful husband, parents, siblings, in laws, and HUGE amount of extended family and friends who are there at the drop of a hat. I am extremely lucky. When I finally got in with a specialist here in town the pain on my right side had calmed down, and he let me know there was hardly any chance my daughter would ever even think she had it normally skips several generations if it’s even from that. He tried probably 7 or more over the counter drug for me the next few months and NOTHING worked, and I really found out what my flares were a few months later. EXTREME pain, can’t eat, can’t sleep, no pain meds help at all! He finally did a colonoscopy and of course I had Crohns for sure and to top it off it is one the worst cases he had EVER seen in his 20+ years. Remicaide was his next step for me and I had been on it for almost a year weaned off my prelazone which was the only other thing that worked for me. No bowl meds, nausea meds all I was on was my regular birth control and Remicaide. I was on my vacation with work and all of a sudden out of no were still no pain I have something coming out of me! I freak out go to my specialist and that day was in surgery and on the highest dosage of steroids and anti biotics 2 days later, life was back normal! Home with my family everything is good no pain no problems for another year. And this comes into where I am now. Remciade my only treatment and I still watch what I eat and drink but I am in all other counts healthy, happy, and even have a career I am in love with. Life was pretty close to perfect. After finding this dream job and them being so supportive of my growth and very supportive of my health, I get my treatments thru our local cancer treatment center, AND love them all! And I am at 5 mg every 8 weeks and healthy. I go for 2 treatments ago and my specialist Dr. calls and says he wants me to come in so no treatment until I do. Kinda upset me because no problem coming in but why stop my treatment? Just give me a ring! But I do putting my treatment behind 2 or 3 weeks. Well the week before my treatment is scheduled I have pains. I call my Dr. (its a weekend) they get me 10-10,mg hydros and they fix me up till that Monday which is treatment day and I hadn’t had any pain for almost 2 days, treatment goes great and I am good to go all normal again. 8 weeks from there I call to confirm with the cancer treatment center and it’s a go, and then she seen my Dr.'s nurse didn’t call in my meds again! SO I call and she says she’s sorry and she didn’t get my blood work from my last treatment that why she didn’t. SAME thing small problems, treatment, good to go! Well! Last Monday I am at my desk and all day I feel blah, I get sick and then the pain sets in! I fight it out for an hour or so go home pain meds and bed. Wake up still pain so I call my specialist and he has me come in. BUT can’t be seen till the next day so pain pills and rest. STILL hurting go to see him and he doesn’t want to just send me home with pills he wants a CT to see WHY I am hurting, so we go that Thursday. He says just my crohns and no meds are called in or helpful hints to fix it. Call them and say PLEASE give me something I can’t function I am in so much pain and he calls me in 5 5mg hyros and that don’t even help me at all. Putting me in the ER with intense unbearable pain Sunday. Takes them everything they have to give me legally to not keep me to kinda control the pain 10 hours later. X-ray said just Crohns so I get sent home with good pain pills and nausea meds. Treatment day was Tuesday and I survived till then. My Dr. called in for my dosage to go up to 7.5. That what we did and it made it sooo much worse! Never had a treatment made it worse. Talked to my nurse at the treatment center and she says monitor and let my dr know if it keeps up. Wednesday was feeling good compared to the rest. My swelling seemed to be calming down my husband got me soup for lunch and it stayed down! And it had been almost 8 hours without the need of pain pills! That changed at 6am Thursday morning. The pain wasn’t focusing on my right side it was my WHOLE stomach and now I couldn’t even walk all I could do was scream. My husband is luckily a strong guy and can carry me bc he had to carry me to the car and into the hospital and they did all the same things again along with another ct and rx and my pain is way too bad for them to be willing to let me go. SO I have been here in the hospital since that day and it is now the following Monday. I still haven’t seen my dr but I really love the one from his office who has been here for thru all of this. My tube from my stomach was luckily out Sunday mooring. I am just not on solid foods today and walked! Felt like I ran a marathon but I did it! Off IV pain meds still on my IV antibiotics and I had pill form and IV form of my steroids today and LOTS better. Hoping tomorrow I can be released. This has been the hardest for me. I haven’t seen my 2 1-2 year girl since Wednesday night it is killing me. My mom is here every day my whole family has been to see me along with friends and extended family. With the help of our family and friends me and my WHOLE family has been more then taken care of in this time. I am telling my story because this is my story and I want people to know what it is, how it affects you and EVERYONE around you. They still don’t know whets next for me. They got blood work to see if my body has antibodies already to the remicaide but we won’t know till later this week. Hoping not, hoping the couple of kinks in my treatments are the cause, we shall see. Dr thinks tomorrow I can go with the pain meds, antibiotics, steroids and some follow ups and hopefully keep this under control again. I fight for not just me but my family and most of all my little girl! She is my whole heart and I will never give this battle up. I will always be there for her as much as I can, this WILL not stop me. My two year old should not see me screaming in pain and know what she knows already. We have to find a cure, and fight this. The pain is no where fun or trying to figure out what works for you and how to control it for you, but We have to and we will, no one in this world would I ever wish this on. We have to team together for good doctors, treatments, and a fight for a cure. Not for just us but people would will find out they have this, yours and their families, the children. I want to find an amazing Dr. to stand by me and that I can trust. Right now I am not there but that is my next goal as soon as I am out of this hospital. I will continue my fight.
