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My story - questions about Remicade!

Hi all,
This is my first post! I was diagnosed with Crohn's in July of this year. My daughter was born September 2012, and I had diarrhea and bloating/cramping most of my pregnancy but my OB/GYN said it was probably just related to being pregnant. After she was born, my symptoms disappeared BUT I had fissures that would not heal! Assuming they were just from childbirth I gave it time. But after a few months my OB referred me to a colorectal surgeon. After some steroid creams and treatments he was starting to get very perplexed as to why I wasn't healing. The diarrhea didn't start back up again until about April 2013 and wasn't even that bad... more annoying than anything! End of May, my colorectal surgeon suggested I get a colonoscopy done by GI to make sure I didn't have Crohn's. I seriously barely knew what it was at that point. I remember I Googled it in the parking lot after my doc visit :) Convinced myself I didn't have it... didn't have fever, weight loss, loss of appetite, severe pain, etc... none of that. But my GI wanted to do a colonoscopy anyway before letting the colorectal surgeon do surgery to fix the fissures. Had colonoscopy July 5th and yep... diagnosed w/Crohn's!! He said I was pretty inflamed and was surprised I was feeling as well as I was. He started me on Entocort but I actually got worse. Started getting cramping on the right side, diarrhea was increasing (but still bearable). My GI rated my Crohn's a 3-4 on a scale of 1-10. Since the Entocort wasn't working, he suggested Remicade. Mostly because the Remicade would be the best thing to treat my fissures. Oh and I should mention I was also diagnosed with Celiac's on top of this. The diet change has sucked, but at least I don't have to take meds for Celiac's. My GI doc says I am his only patient with both and it's pretty rare that I have both.

I had my first infusion on August 30th. I've had the 3 loading doses, and actually responded almost immediately (within 2 days of first dose). I felt great, back to how I felt before. One BM a day, (formed), no cramping, and fissures no longer hurt and I could tell they were healing. I am now in the first 8 week span... and I can tell my symptoms are returning :( They bumped up my infusion 1 week so that I am waiting 7 weeks instead of 8. Anybody else have these breakthrough symptoms? My Remicade nurse said it was common especially for the first 8 week span since my colon is not healed yet.

I have had anxiety most of my life anyway, and as you can imagine it about quadrupled after all of this along w/depression. I had to start seeing a therapist but am currently not taking anything for anxiety because I want to learn how to manage it on my own. I am scared for the long-term expectations. I wonder what my life will be like now, and I wish I could just be healthy for my daughter as I was before (or THOUGHT I was). My GI doc says the fact that I responded so quickly to the Remicade is a good indicator that it will work for me long term. I am just scared of the fissures coming back and Remicade wearing off eventually... then what? Ugh.

Good news is, I have a wonderful husband and good support system of family and close friends.

Thanks all for reading! I'm glad I found this forum. :)
 

David

Co-Founder
Staff member
Hi there and welcome to the community :) Thanks for sharing your story and I absolutely understand your anxiety.

Out of curiosity, other than your colon, where is your disease located? Is it in your small intestine as well?

All my best to you.
 
Welcome Angelique02,

I have visited the site for sometime but for some unknown reason didn't sign up until today so I am a new member as well. Still need to post My Story. However, I have lived with CD for many years.

I used remicade when it first became available for use in Crohn's. It served me quite well for a few years & then sadly I developed antibodies so had to stop. Back then they didn't adjust the dosage like they do now and more meds are available so there are more options to consider if the Remicade has to be discontinued. Soon I will probably try Humira - another biologic.

Give this med sometime. I think I noticed it really working after the loading doses which was probably week 8 or so.

CD can certainly challenge the anxiety levels. I think it's great that you are learning how to manage your anxiety.

Take care.
 
Well I tested positive today for c diff. I took an antibiotic a couple weeks ago for a bladder infection and I thought my crohns was flaring up again before my infusion. But they wanted to test me for this before bumping up my infusion date. Ugh. Could be worse I guess. At least it probably isn't a flare and is c diff. I don't feel that bad, just noticed a change in bowel habits.

Yes, the crohns is in my small intestine as well. As my GI doc put it, he found ulcers "everywhere" when he did my colonoscopy, but he still rated my crohns a 3-4 on a scale of 1-10.

Thank you so much for your replies and support! I am glad to read stories of others with this disease.
 

David

Co-Founder
Staff member
With those feelings of anxiety and disease in your small intestine, I strongly suggest you get your vitamin B12 and magnesium levels tested. People with small intestine disease are commonly deficient in them and one of the symptoms is anxiety.
 
I have had several blood tests, including CBC and complete metabolic panel. All came back normal, and I was told I was not anemic, but I am not sure if B12 and magnesium were checked. I will have to ask my doctor. Thanks for the tip!
 

David

Co-Founder
Staff member
B12 and magnesium are not covered in a CBC or metabolic panel. I strongly suggest you request them and let us know the results as we can help with further interpretation.
 
Hi my name is jamie im 13 and i never had a kid but i went through all of that it started with fissures and diarrhea and the doctors didnt know why they wouldnt go away so they did a endoscopy and colonoscopy and diagnosed me with crohns in october 2010 and started me on remicade and immeditly noticed changes..i was in the hospital 10 nights and 11 days until i got to go home it was so bad i couldnt eat and had to get a pic-line in my arm for nutrients i went from 120 pounds to 80 pounds in 2 days and there was this one bad night at the hospital where i was pooping just blood and barely any stool i lost 3 full toilet bowls full of blood and passed out on the toilet and had to get 3 blood transfusions



its not exactly how your story is but maybe you relate a little in the future or past at some point ...just thought id share what i was thinking as i came across this

:):):):):):)
 
When I had to see my family doc for something unrelated she confirmed that B12 was not checked, but that large red blood cells can sometimes be indicative of a B12 deficiency and mine were actually on the smaller side of "normal" sized.

I got my 4th dose of Remicade last week. They went ahead with it after 2 negative C Diff tests even though I felt like the C Diff wasn't gone. They put me on a second round of Vanco just in case and I was on the second round of Vanco when I got my 4th dose of Remicade. So far I don't notice a huge change. The past few weeks I have noticed narrower stools and it doesn't always feel like I am "empty" after I go. I worry about a stricture, but my doctor/nurses say that as long as I have no pain, fever, vomiting, etc it's probably just inflammation. I hope the Remicade kicks back in soon because I really was feeling tons better before the C Diff! Thanks all for your support.

@Jamie that sounds awful! Such an experience at such a young age. I hope you are feeling better.
 
I also forgot to mention, my family doc said that next time I have to get blood drawn they'll check B12 levels. I also started taking Celexa for my anxiety which has helped. I take Klonopin on and off but usually only to help me sleep if I am feeling anxious before bed.
 
I wish you the best. The beginning of your story reminds me of my own story. I was having trouble with healing from a fissure and from hemmrhoid surgery. A surgeon discovered I had. Crohn's and that was keeping me from healing. I have been on Remicade for thee years now. I hope you feel better.

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