Crying...so scared of biologics

[iriechic]

I have an IBD: Lymphocytic colitis and celiac disease; however my LC is much like crohn's. I'm in an awful flare right now because of a c.diff infection I had in May. I've been on Entocort for nearly 3 weeks and no improvement whatsoever. I had labs done last week for Imuran/6MP/Methotrexate. I can hardly wait another minute to start a med, so I called my GI today. She wants me to just go ahead and start a biologic (Remicade) this Wed. I am freaking out because I feel like I need something to calm this flare but I worry about biologics. I'm so upset I could really use a shoulder to cry on! I'm 34 and quite scared. This has been the hardest time in my life.

My daughter started kindergarten today and I can't even focus on what a huge milestone that is because I'm sick and my 1.5 y/o son is staying with the grandparents temporarily because I feel so unwell. My husband does not know how to comfort me; he doesn't know what to say so he doesn't say much.

Any positive thoughts or encouragement would be greatly appreciated. Any successful outcomes w/Remicade would also be nice. I want to be a good, healthy mom and wife soooo bad it hurts.

 

[rollinstone]

Hey sorry you are struggling, things will be okay just hang in there, have you thought about a fecal transplant? They are extremely successful at eradicating c.diff, as for remicade, I am about to start it soon and am also hoping for success, I heard there is a 57% success rate of complete mucosal repair with remicade and imuran/6mp so I am hopeful. Hang in there, God bless

 

[Clash]

My son started Remicade a year ago, we went straight to Remicade barring a stretch of Pred while waiting to get in with a new GI.

Remicade worked right away to give him relief from all his symptoms, it was a full 180 from the horrible flare he was in. It works quickly for many here on the forum but I know it can be a hard decision. For us, we were just so thankful to see him starting to get back to his childhood.

Once he was through the loading doses we had to tweak his schedule up his dose and eventually add methotrexate to get all the inflammation under control. He has since come off the MTX and we have our fingers crossed.

It is important to get a flare under control so as not to prolong damage but you also have to be comfortable with your treatment plan. I would list all of your concerns and go over them with your GI if you still feel uncomfortable maybe you could start one of the immunosuppressants. They can take some time to reach therapeutic levels but it may be better for your peace of mind.

 

[iriechic]

Hey, thanks Joshuaaa. I'm really grateful for your support. I did ten sessions of fecal transplants so the c.diff is gone. At least all five of the c.diff tests (two PCR tests, one stool culture, and two toxins A & B tests) have come back negative/normal.

Thank you for the Remicade statistic on mucosal repair, that's comforting to know. I pray you get long lasting remission! God bless you for taking the time help me out while I'm suffering.

 

[iriechic]

@ Clash- Wow, that is excellent about your son's success with Remicade. I'm glad he doesn't need the methotrexate anymore. No teen/child should ever know this kind of pain. I tell my husband i would take childbirth over being in a flare any day.
You hit the nail on the head; my GI doesn't want me to have to wait the 3 mos it could possibly take for the immunosuppresants to reach therapeutic levels. This flare has been ongoing for four months and I need relief. It's just hard to digest the idea of being on a biologic b/c so many Naturopaths, etc., tell me not to do it. I feel like my back is up against the wall...I have to do something to stop the inflammation but is Remicade the right thing?...I don't know how I will know that answer.

Thank you for your time and thoughts!!!

 

[rygon]

Im on remicade and it has changed my life for the better. I wouldnt go as far as being perfect, but I can now live a normal life and do all the outdoor sports I want to as I have so much more energy, and do not need to go to the toilet half as much

 

[Riley]

I also have young kids and I know how hard it is to keep up with them when you feel awful. I highly recommend Remicade...it worked great for me for 5 years before it lost its effects. Yes the side effects are scary but they are very rare. I know naturopaths/family members etc. mean well but they aren't in your shoes. You have to make the best decision for you and your family with the options you have available to you.

I think this drug will give you a quality of life that you won't have otherwise.

Good luck and let me know what you decide!

 

[Tired]

iriechic, I will be starting Humira in two days, I don't want to take it but I have no choice. I don't think you have much choice either, what would you do if you don't take the Remicade? If you think about the fatal cancer risk, you are a women, majority of cases were men, I am in the risk group but with this disease, you have no choice.

 

[BlessingsK]

I am very new to this forum, but I was just diagnosed w crohn's in May (20 days in hospital) and then c. Diff (perhaps from cipro and flagyl). Needed 40 days of vancomycin then thank God the stools firmed, however, then there was a fistula. The first time my GI tried to prepare me that I may need remicade, I silently thought, no way.

The diagnoses are hard enough, then the treatments feel like a whole different thing to process and decide on. It took me a few weeks, iriechic, but I stayed in prayer and God has helped me so much. I'm not saying this is what you should do/feel, I'm just telling you my experience, being 39 yrs old, I have come to a place of gratitude that God has given us remicade through the scientists in the lab and the doctors and I've spoken with people who have taken it for many (10) years with no serious adverse effects and it has given them their life back. The remicade sub forum here really helped me, you can look back in time and see a lot of positive remi feedback.

I've had a clean diet for many years (psoriasis made it necessary). Gluten, dairy, sugar-free. After reading Breaking the Vicious Cycle , I also gave up rice and quinoa and all grains. I dealt with the stress in my interpersonal relationships, broke up with bf who wasn't right for me, and couldn't work for 4 months (still recovering and seton surgery 7/26) and finally I said something has got to give.

My doctors agreed remicade was the best option. After some serious soul searching and a 180 turn, ive turned my trepidation into gratitude and deep, prayerful hopefulness. You have a different history and story to tell, but I just want to reassure you that time is needed to process these decisions, whichever way you decide.

I started my first remicade infusion on Thursday and I don't mean to sound Polly-anna-ish, but I do feel dramatically better already, psoriasis clearing (side bonus) and now praying the fistula safely closes as the abscess finishes draining and that area heals. I pray over the remicade:

In the name of my savior Jesus, I gratefully and boldly come before your throne to ask that this remicade enter my body as a healing elixir, going only where it is needed to provide healing and life. I ask for protection from any and all side effects and risks associated with taking this medicine, both now and in the future. I ask that it blesses me with healing, energy, and a perfectly balanced immune system. Amen.

Holding you in light. Blessings.

 

[Daboyn8]

I have been on Remicade for over 5 years now, and have to say, it works great for me. Hopefully it will work the same for you! I hate hearing people not feeling well with IBD. I hope you get better, and fast!

 

[iriechic]

BlessingsK- LOVE the prayer!!! I will be reciting it over and over again should I begin the Remicade. Sorry you experienced C.Diff, too!

I need to email my GI, as I forgot to mention to the nurse, that my PCP discovered I currently have a low-grade UTI. The UTIs have been pretty commonplace (but rather asymptomatic) when in a flare. I don't know if that would prevent me from getting my first infusion this week or not. I'll keep you posted.

Riley- this is part of my concern, developing antibodies to the med. Did you find something to replace Remicade that works again? I hope so!!

 

[Desiree1]

Hi there. I will be starting biologics soon too(Cimzia). I'm scared as well, because I'm jumping from Pentasa (mild) to it and am scared of the risks, but looking so forward to the help it can give. I am a mom and wife too and just want relief and be able to live my life as normal as possible. I want to be able to not have to have bi- weekly trips to the ER and pray this will help me.

My step dad was on Imuran and last year he switched to Remicade and it has offered him a normal life, he is very happy with it. He runs his own business, works out daily and goes on trips monthly. He hasn't always been able to do these things.

As for developing antibodies to Remicade, I've seen a few people on here who made a switch to another biologic like Cimzia or Humira. These might still be options if that ever happens.

Good luck and you're not alone!!

 

[iriechic]

Hi Desiree,

Thanks for the comfort your response gave me! It's nice to feel less alone. Of course, I wish nobody felt the pain of living with an IBD ever. I do understand your feelings about going from Pentasa to a biologic. I never tried Pentasa, but tried Asacol, which did zilch. Entocort worked so lovely for me last year but this year I might as well be throwing it in the toilet versus taking it because it's having no effect. I even checked the expiration date on the box. I thought perhaps it was expired, hence not working; it's good until 2014 :/
I pray that these biologics give us our lives back, just as it has given your step dad his vigor again. Bless my precious daughter's heart, this disease has even taken a toll on her sweet heart. She prayed on an enormous rainbow in the sky tonight that her mommy's belly would feel all better with new medicine so that we could play and do fun stuff together. Talk about melting my heart. It's moments like those that it's hard to keep the tears from flowing like a water faucet. I pray that her beautiful wish comes true.

 

[Lisa]

I've been on remicade since 2005, and don't want to think about where I would be without it.....it really has been beneficial to me....hope it works well for your!

 

[Victoria816]

My daughter was just diagnosed last week with severe Crohn's. We met with her doctor again today to discuss treatment. Remicade and 6 MP were the drugs he recommended first. He said he worked at Mt Sinai where Dr Crohn's worked back in the 30's. He explained to us how far medical treatment has come and in his experience, over his time at Mt Sinai, the combination of these two medicines work best for a severe case. Eventually if all calms down and is well we can discuss other medication down the road, but for now the safest route for my daughter is the Remicade and 6 MP. The team of doctors she has are wonderful and I am putting trust in them. I have prayed over this over and over and my heart feels at peace with the decision to move forward with her treatment.

I pray you find peace as well. This is the most amazing forum. I am truly thankful and blessed to have found so many others that feel my pain as a parent and have personal experience.

Best of luck!

 

[purdueCrohns]

I talked with my doctor about the risks of biologics recently. It's going to take 5-10 years to know for sure, but preliminary data is indicating that biologics decrease the chance of colon cancer in crohn's patients significantly. This is much more significant than the increased risk of lymph node cancers on them because they are still extremely rare whereas colon cancer is much more common. It is the belief of many involved in the research that Remicade will be proven to be a net reduction of cancer risk.

 

[iriechic]

Thanks for the info, purdueCrohns. My GI believes the benefits of being on Remicade greatly outweigh the risks for my situation. I did the whole preliminary consent form signing today and the GI placed the Remicade order. I misunderstood and thought I'd be starting infusions today but it looks like I'll have to wait just a few more days (either Fri. or Mon.). It's too risky and uncomfortable to let the inflammation continue. I'm putting my faith in God and my GI doctor. My doctor gets five star reviews so the gal knows her stuff. ;-)

 

[BlessingsK]

Iriechic, that sounds like a plan. I'm glad you trust your doctor and she gets good reviews. May the remicade stop the disease process and reverse any damage that's been done and protect you well into the future.

May it be our 'performance-enhancing drug':dance:

Hey, PGA golfer Phil Mickelson won the British Open while taking a biologic (enbrel) a couple months ago (he has psoriatic arthritis and has been on enbrel about 3 yrs). Imagine how much easier it will be to take on motherhood now!

 

[iriechic]

Thanks for the positive energy, BlessingsK! I truly appreciate your encouragement.

It hasn't been an easy decision because my extended family includes medical practitioners whom really wish I could handle this disease with holistic treatment. It's been a year and a half since diagnosis and I've tried so hard to do things naturally (GAPS diet, acupuncture, Qi Gong, functional medicine, supplements, LDN, etc.). If I could remain in remission through those methods it would be great, but it hasn't been the case....so onto new treatment with Remicade.

Like you, my husband reminds me of Olympians with crohn's who've won medals. I'm excited to think about my personal ability to better handle/enjoy motherhood (spend less time in the bathroom)! My GI even said, "you're going to wonder why you didn't get on the biologic sooner!"

I hope you're doing great! Wishing you and everyone lifelong remission. xx