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Newbie to Crohn's Forum but not to Crohn's

Hi all! My name is Kristen and I am a 31 year old female from deep South Texas (I live 10 minutes from the TX/MX border). I was diagnosed with Crohn's Disease 11 years ago and for the first six years I was fortunate enough to not have too many problems/flare ups and controlled the disease with just Pentasa. I weighed 330 pounds when I was first diagnosed but decided to start taking care of myself better and was able to lose 115 pounds before the disease reared its ugly head. When I was 26 I started having really bad flares which caused me to be admitted to the hospital for a week at a time. I started taking Lialda, Imuran, and Prednisone but didn't tolerate Prednisone at all. It ended up putting me in the hospital multiple times and caused ulcers in my duodenum. I then tried Cimzia and hallelujah it worked for a few years! Sadly, about a year ago it stopped working for me so after a lot of thought and conversations with my family and GI I decided to try Remicade. Remicade was okay for me, but I still had a lot of problems with abdominal pain. I would get these flare ups where I would be in this intense pain and be vomiting for hours on end. I can deal with diarrhea at work no problem, but the abdominal pain gets so bad that I have to call in sick a lot. Thankfully I have FMLA, plus a very supportive employer and boss. I just hate when I have to call in sick because I love to work and love my job. I am all out of vacation time so when I am home sick I am not making money which has put me into a financial hole.

I got off of Remicade and started Entyvio about a month ago. I have had two infusions so far and have seen minimal improvement but I am still hopeful. I am also anemic so have been taking Ferrex and have recently started to question if iron is what is causing the severe abdominal pain and vomiting. Has anyone else experienced what I am describing taking iron pills? I take Vicodin for pain, but medicine like that has never quite worked on me and I have to take three at time to get pain relief. Am I the only one out there like this? I get frustrated a lot, and sad because I feel like my family and boyfriend don't understand what it's like. All weight loss attempts have been haulted because I just feel so crappy a lot of the time. I feel as if my boyfriend thinks I'm "faking" sometimes but that is not the case in any way, shape, or form. I have been looking for a support group down here but unfortunately this part of the country doesn't have a lot to offer. I apologize if I am rambling, I'm new to this.

I know there are people out there that have it a lot worse than me, and to those people I pray for you every night. Despite the lows of having this disease I have a lot to be thankful for such as my wonderful family, friends, a great boyfriend (I just want him to be more understanding), a job that I love with an outstanding company who have been nothing but supportive, and a friendly albeit sometimes crazy, loveable, charismatic pit bull named Loki. :sign0144:
 

David

Co-Founder
Location
Naples, Florida
Hey there and welcome to the community :) I'm so glad to hear you have a supportive boss but am sorry you've gotten into a financial hole regardless :( That's definitely one of the frustrating aspects of this disease for some.

Out of curiosity, when was the last time you had any scans or a colonoscopy done to evaluate your disease state?

All my best to you.
 
Sharkgirl:

Sorry to hear your situation. I too live in the south, but closer to New Orleans, where the food is awesome, but I cant eat it. I understand how you feel with people having trouble not understanding/believing what you are going through. I myself HAD that problem a few months ago. Once this person went to some of my appointments, read my reports, was made to go to surgeries in the past, and will be made to go to my 3 future procedures planed over the next 3 months. Now he has had a change of heart. Alot of people have trouble with what they cant see. For those types of people, I implore them to get online and research all of the complications to get a better understanding. I work offshore, but haven't been back since December. With all the things going on, probably wont be able to go back. Glad to hear your boss is understanding. From what I gather, the meds only last a year or two before they have to be changed out. Im sorry to hear about your financial situation also. My GI told me from the start, "CD is very expensive! ". After a gallbladder removal, fistula surgery, 2 CT scans, 2 MRIs, barium swallow, 3 back procedures "scheduled", countless meds,and countless doctors from my GI, to the colorectal surgeon, hip doctor, back doctor, and Nero surgeon, all in less than 9 months, I believe him.

You have been dealing with this longer than me so I can image the strain on you and your family. I put my faith in God, thanking him for each day with my wife, children, and family because each one is a blessing.
 
Sounds very frustrating. I'm sorry friends/family aren't being as supportive as they could. There are always people who have it worse, but tht doesn't make our own journey's easier.

As for the weight stuff--just take that off the table right now. You have enough to deal with. Your overall health is the priority. Try reading Healthy at Every Size. It is a great book that really has allowed me to be happier and healthier and prioritize. Hope you find some of the support you are looking for here. Hang in there.
 
David -
I had a colonoscopy last year before I started Remicade and the disease was very active. I had a CT scan 6 months ago when I was in the hospital for severe abdominal pain and the doctors thought I had a blockage but it turns out I didn't (thank God). I get my third Entyvio infusion on Friday.

Pottytime -
I think having my boyfriend come along on some doctor's visits is a great idea. He knows what Crohn's disease is, but I don't think he understands what it is. And yes, CD is very expensive! I have good health coverage through my employer, but when I'm home sick and not earning money I run into problems with bills. But I also thank God each and every night for all of the blessings in my life, because I am very blessed.

Caitlin84 -
My doctor has told me to take the weight stuff off of the table too and my priority should be getting into remission. It is my prioirty, but the weight is frustrating too. Thanks for the book recommendation, I am an avid reader and will have to pick that one up!
 
It is really hard--our society is not very kind to anyone who doesn't make weight a priority. Body of Truth by Harriet Brown, is also another really good book for helping with the societal/weight frustration, at least for me. =)
 
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