Crohnie First Timer

[sare2886]

Hi All....I'm Sarah. I have looked through the website before and decided today to join. Every thread that I have read on here everyone seems so nice and helpful and frankly, that is what I am looking for.
A little bit about myself....I was diagnosed December 7, 2006 (I will never forget it). I was attending college and had been sick for a few weeks prior. After collapsing on my dorm room floor, my roommate took me to the hospital. I was sure it was my appendix, but after a while a surgeon came in and asked if I had ever heard of Crohn's Disease and I said yes, my mother has it. I was in the hospital for over two weeks and it was hellish being that sick and far away from home. It seriously scarred me for life. I was put on Pentasa and Remicade, but after a while I developed an anaphylatic reaction to the Rem. Fast forward two years of being healthy, I got sick again but this time at home. Two week stint in the hospital again led me to a new GI DR in my hometown. He suggest Humira and stay on the Pentasa. And I was ok (on and off) for a few years until this year.....this year has been terrible for my Crohn's. After being in and out of the hospital recently I was admitted to the ER and scheduled to have a small bowel resectioning a few days later (May 24). All went well with the surgery (about a foot taken out, no bag required, up and moving around and eating soft foods).
Honestly, even though I feel ok and am so thankful that my surgery went well.....I'm more scared of my Crohn's now than I was before. When I was first diagnosed I was really depressed. It's easier now bc I have my mom who has had resectioning done too (1992) and she knows all about what I'm going through, but sometimes you need others...
Anyway this is a heck of a lot longer than I had anticipated. I hope every one out there is in good spirits and enjoying life.
Thanks in advance for future support and advice. :ysmile:

-Sare

 

[nogutsnoglory]

Welcome to the forum, it's a great source of support and I'm glad you have read through and found threads useful.

I know it can be scary because we can't predict the course or nature of our illness but we also can't let the disease take over us. You are your own person, who happens to have this disease but you are not defined by it.

So you are not even a week out of surgery? How are you feeling? I hope you will now go into remission and not have to worry about things. Have your doctors discussed maintenance therapy post-op?

 

[lizbeth]

Hello and a very warm welcome to the forum.

Well done on getting through the surgery, I can't imagine how you're feeling right now as I've not had surgery but really hope you're doing okay.

Really glad you joined the forum, it's a great place for help, support and friendship, all of which are here in great supply. Take care and good luck with your recovery. :ghug:

 

[sare2886]

Thank you both! I am feeling overall well, I am noticing that the right side (where I had my surgery) is puffier than the rest of my stomach. I am told by my mom that it is normal, but I am semi-freaking out. My husband thinks I looked like it before, but I don't think so. Other than that, I feel good. I hope that I go into remission also, my mom was in remission for roughly 15 years before she had a "huge" problem. I meet with the surgeon and GI next week for post-op discussion and plans.
I am not going to let this disease run my life like it has this year.....it controlled my ability to work, function and live a newly wed life (thank goodness for a rock of a husband).
So here's to living a healthy and happy life

 

[mollys25]

Hi Sare, I am glad everything went well and wish you a speedy recovery. I am really scared. two years ago I had bad abdominal pain and was put in the hospital for 2 weeks with which they told me UC. Two weeks ago, I was in the hospital with extremely bad abdominal pain I was given a shot for pain, abts, after a CT scan and told I had colitis. I was told to follow up with my GI which on Friday did a colonoscopy. He told me to come early so he could give me fluids because I was dehydrated. I kind of feel like he did not send me to the ER because he owns the outpatient surgery center. I am being told nothing I was given flagyl and cipro which i just throw up I still have extreme abdominal pain vomiting and constant nausea. I have no idea how long i can expect this to last I have lost 15 lbs in 2 weeks. It takes forever to get a call back from the gi office. and it is always the receptionist who is not kind. The PA called me back once and said she was going to talk tot he doctor and I told her I needed something for nausea, When I got a call back I was told the doctor did not want me to take anything for nausea and gave me samples of asacol. first dose last night and I thought i would die. I got so nauseated, and had such bad abdominal pain and i felt like my entire upper Gi was inflammed. This am back to diarrhea. I have not gotten a call about any of my blood work, no info on how long i can expect this to go on. Is it me or does it take this long or should I look for another gi doctor. I am glad you have an understanding husband I feel like mine is tired of me. I am not sure what he is going to say when I tell him there is no cure and flare ups can happen. It hurts because I took care of him since 2009 with numerous illnesses and surgeries. I just wish someone could give me an idea on a time frame I just started a new job 3 months ago and said i can not get a fmla. My only hope is short term disability and I was hoping i would be better before this. My husband is disabled and now that is our only income. I used our savings in February to visit my sister who was diagnosed with stage 4 breast cancer. I am worried sick over finances and the unknown I thought being your mom has experience she could put some light on as to how long this will last. I have not been eating any solid food few sips of tea, sips of gatorade, and a maybe a piece of toast a day if that. I think I am getting dehydrated again I get charlie horses in my calfs when i stand up. Any insight in to what lies ahead would be helpful. My job asks when will I be back and I tell them I can not tell you I really dont know. I am afraid i will lose my job as well

 

[sare2886]

Goodness Molly I am so sorry to hear about your ailing. I honestly would look into a new GI doctor, Crohn's/UC/IBD diseases can be difficult and it is easier having a good support system and that includes a doctor that you can trust and count on. I love my GI doctor and I know that my health is in his best interest at all times.
It is not good to be dehydrated at any time, but especially if you think you are having a flare up. I would go to the ER and seek help if you have a hospital that you trust. If you don't want to go to the ER make an immediate appointment with a new GI doctor.
As for an emotional support group, educate your husband. It helps to have people who you can cry to and rely on especially a spouse. It can be difficult and trying and frustrating etc etc etc but remember every emotion you feel effects your digestive system, so that is why it is best to try to remain positive in all outlooks of life. Your husband may also be frustrated that his wife is sick and he is unable to help you, not that he is actually frustrated with you as a person. Try talking to him about it if you can.
Lastly, your job. I have been blessed with a wonderful and understanding boss of a small business that lets me take the time off without question so I am a little unsure of how such situations are resolved. If you have a human resource office I would contact them or your local unemployment agency?? Again, I'm unsure of this protocol.
I hope that everything works out for you and I am interested if you find a new dr or what you are going to do. I pray for your health. Please stay in touch...

-Sare

 

[mollys25]

Thank you for responding so quickly. I dont even know how to begin looking for another gi doctor and now being out of work i need to come up with the money to pay for my benefits. I am afraid that I will lose them in a very short time. I am a nurse and I hate what I see in the medical field. I am not familiar with Crohn's. I had a young girl in the hospital in her 20's that most of the nurses thought she was drug seeking. she was there for like 24 days. I was a new nurse at the time and will always remember her begging for the pain to go away. Now I can relate. I am beginning to think that my family does not believe something can go on this long. I always loved to cook and feed my family. Being Italian we plan our food well ahead of time. I do always try to keep it healthy. thanks for your response. i will keep you posted