• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Brand New

K

katiesue230

Hi all.

On January 12th, it was a normal day at work. When I got home, I couldn't keep any liquids down. I continued to vomit every 15-20 minutes until I went to the emergency room. Fortunately, the staff there noted that something was wrong and did an x-ray, labs, CT scan, etc. Long story short, I was told that it was not likely Crohn's but a tumor had been removed and a bowel resection had been completed. Days later, lab reports were back from the tumor and it was not cancer. At this time, I was told that I had Crohn's.

Hospital staff seemed shocked that I did not have cancer. I had a really tough time managing the clear liquid diet long enough to have my ng tube removed but eventually got it. I was able to come home but the numbers on my labs are still all over the place. My hemoglobin was still between 8-9 the day I came home. I feel awful. I'm tired all of the time. Anything I eat comes out the other end within 20-30 minutes. Apologies if that is too much information but there has to be something to look forward to.

I follow up with the surgeon this week and Feb 9th have an appointment with a specialist.
 
ronroush7

ronroush7

Welcome to the forum. I am sorry for what you are going through . Have you been prescribed any meducatiinn yet? You have fiunda very supportive group. Let us know what your doctors say. Feel free to come in here anytime.
 
K

katiesue230

The appointment with my specialist was moved up to today. Basically, I have 8 weeks to decide on a medication. He recommended either Azathioprine (Azasan or Imuran) OR Methotrexate (Otrexup, Rasuvo, Rheumatrex, Trexall). He is waiting for the surgeon to release me from his care. I will start the medication in 8 weeks, take it for 4 weeks and follow up with him to see how things are going.

I am overwhelmed with side effects, potential hazards, and feeling a huge lack of motivation to do anything. I meet with the surgeon on Friday but it sounds like he will be seeing me at least once more. The surgeon is wanting me to return to work as soon as possible and the specialist said it would be a good idea to fully recovery and take a few weeks off. I don't know that it even matters at this point.
 
ronroush7

ronroush7

Be encouraged. We have another section in here called Treatment. I believe it has sections dedicated to both medicines you have mentioned.
 
JaimeM

JaimeM

The way I look at the side effects of the medicine-- I want to have a good life right now, if I have to take a medication that may possibly but not probably cause something bad way later in life then i guess so be it.

I'm sorry you've had such a rough go at it so far. Hopefully that means from here on out it will be smoother.

I take Cimzia, I did Remicade right away. I had done some research that starting on a biologic right away before it gets serious can keep your crohns from becoming serious. I've done really well. I still work full time and have a baby. I've had a few complications here and there but all in all live a normal life. :)
 
my little penguin

my little penguin

Moderator
Staff member
The beginning is the hardest
Everything you eat or take medicine wise has potential side effects
Just because a side effect is listed does not mean you will get the side effect
Doctors prescribe meds when the benefits out weigh the risks
You take risks everyday

I know for my kiddo ( dx at age 7 and currently 12 )
I look at numbers
A child's risk of death under age 14
By car 1 in 250
By drowning 1 in 1000

Average person on the street risk of getting T cell lymphoma
2 in 10000

Person with Ibd taking biologics( remicade humira etc) plus immunosuppressants ( 6-mp /Aza/Mtx) 6 in 10000

That said most gi are moving towards using Mtx first instead of 6-mp /Aza due to the increased lymphoma risk when used as a monotherapy

In the end it's not the Ned with the most risks that you take
It's the med that happens to actually fix your crohns
Since every med works differently for everyone

My kiddo needed humira plus Mtx
Others don't
It's just what is
Without it damage can be done and that can be deadly quickly

Hugs
 
tots

tots

Location
Austin, Texas
I was Dx at 28- have had symptoms from the age of at least 4 or 5.
When I moved to Texas my new Dr took me off all meds, wanted my body to "prove" I had CD. Long story short- my CD spread, I came out of remission sicker than I had ever been. I can say even if your symptoms are not at their worst the disease process can be progressing. Do whatever it takes to get into remission, you cant see all the things going on and you don't want to make things worse. Make sure you trust your Dr and don't be afraid for a second opinion. I think thats just a smart way to go for a lot of us!

I sure hope your feeling better soon, you found the right place for understanding and information!!


Good Luck!


Lauren
 
fuzzy butterfly

fuzzy butterfly

Well-known member
Hi and welcome. I agree that the 'what if's are not happening now and may never do so.. you are feeling rotten right now so take some medication to help you feel better now. Once you get this under control you maybe able to take a med with less side effects later. It is a heavy duty disease and can need an argressive medicational approach at first. Best wishes 💕
 
FightforLauren

FightforLauren

New, as well, as as you can probably see, it is definitely a great place for those suffering and those who are looking for information. Cheers and wish you the best!
 
K

katiesue230

Update: I am on 25 mg of methotrexate (injection once per week). I take Colestipol twice a day and I take Lomotil as needed. The as needed is more like once a day. I almost forgot-Folic acid too.

I am doing my best to stay positive but I am miserable. I feel keeping my job is a daily struggle and so is continuing my education. Also, I am tired of people asking if I feel better yet.

My first stool sample results were over 200. I have no idea what that means but my specialist is an insensitive jerk so I will find out if/when he ever decides to explain it. Other options for a specialist are over an hour away and it would add to the stress of keeping my job.
 
K

katiesue230

My medication is being changed to Humira. I'll be heading over to the medication forums to read the experiences of others taking Humira.
 
K

katiesue230

Update: I don't know what I would have done without this forum. I have been able to educate myself and have an idea of what to expect throughout this nonsense. GI specialist is still a jerk and I've scheduled with a new one. I've also became the girl that takes a medication for everything. It was my worst nightmare but I finally reached a point where life wasn't enjoyable and I decided to do what made me feel better. That included quitting my job. My supervisor was a jerk too and I had been aware for a couple of years but just kept my head down and did my job. I decided that I am paying far too high a price for a job that does not value hard-working employees. It was the best choice I had ever made. The Humira is working and I have been able to eat. I am getting better grades in school again and I've had job offers that pay better. It isn't just about the money though. I've been applying for positions that I have always wanted to do but just thought it wasn't the right time. Old me probably would not even recognize new me but I am surviving and a lot less miserable. Thank you all!
 
You must log in or register to reply here.
Top