Remission: Is it a Reality?

Remission: Is it a Reality?

When the average person hears the word “remission,” there’s a good chance cancer comes to mind. For those of us with inflammatory bowel disease it’s a bit of a mystical term. One that can be perplexing, even confusing at times.

Is it possible to really reach full remission? In my experience, it’s been a bit elusive.

Since my Crohn’s diagnosis nearly 12 years ago, I’ve heard that word a handful of times. The first time was in February 2015. I woke up after a colonoscopy and the doctor told me, “Natalie, there was no sign of Crohn’s disease, it’s safe to say you’re in remission.” I’ll always remember that moment of disbelief and overwhelming relief and happiness. My mom and now-husband were standing beside my bed, tears rolled down my cheeks and theirs. To say I was thrilled was an understatement. After going through the prep, I was ravenous…we went out to The Cheesecake Factory to celebrate. I shared the exciting news on social media and would have yelled it from the rooftops if you let me.

Sadly, a mere week and a half later…I ended up in the hospital with a bowel obstruction.

The weight of the word “remission” hung heavy on me. So much for that. As I watched the pain medications drip into my veins I wondered how it was possible that my scope results were perfect just days before. So many emotions ran through my mind. I was angry and in disbelief. I vowed to always be weary of that word moving forward.

Then, six months later after the removal of 18 inches of my small intestine…that word returned. While surgery isn’t a cure for Crohn’s, it does provide you with a fresh start and the hope for patients is long term remission. For me, once I healed and my body got adjusted to the changes made within, I felt incredible. I was in awe of how it felt to eat without pain or the need to run to the bathroom. But there will still days in the mix that would make me question if I was truly “in remission.” Whenever I started to feel invincible, I would have a flashback of the last go-around with that term and it would bring me back to earth.

With my pregnancy this past year, I do feel remission was achieved for those nine months. There were countless times I would eat or drink something or feel on edge or stressed and know my disease should be rearing its ugly head. But, it was nowhere to be seen or felt. Unfortunately, within a week of having my son I noticed the symptoms from the past all too soon.

They creep back and it feels like no time has passed. Ah yes, I know you. You’re back.

My appointment with my gastroenterologist went great last week, in their eyes. I told them the first nine weeks postpartum I had maybe 10-15 rough days. Two doctors both asked the same question…any blood? Once I said no, they seemed fine with it. In the past three days, I’ve needed pain medication twice to get through. I laid in bed and felt like my abdomen was burning last night, my husband needed to feed our baby so I could relax and fall asleep.

Is that the reality of “remission”?

Our we ever truly out of the woods and in the clear? With IBD it can be difficult to share and discuss because no two people have the same exact disease process. What we can do is be there for one another, support the good times when remission feels like a possibility and when it’s completely out of reach.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (19)
  • thedancingcrohnie moderator
    5 months ago

    I was diagnosed with Crohn’s in 2011, and have never achieved remission despite being on all sorts of biologics and of course the usual steroid treatment. From what I gather, remission doesn’t mean free of symptoms. And so, I sort of hear that word and it doesn’t mean much to me, since I would want it to mean being pain free. I guess you just have to take things hourly and not depend on a label from a doctor; because many times, they say things look good when you feel awful inside.

  • SteffTigert
    11 months ago

    I was diagnosed with Crohn’s disease 21 years ago after a pregnancy from hell. I’ve come a very long way from 69 lbs. at 5 months pregnant, thanks to one doctor who finally believed that I didn’t “just have an eating disorder.”
    I took steroids, antibiotics and anti-TNF drugs for many years and finally Remicade was introduced. I tried Remicade, and did not tolerate it. I was in the hospital for 3 days after my 2nd infusion went terribly awry. A few years later, I had a blockage and had surgery to remove most of my terminal ileum.
    I tried HUMIRA and all I acquired was joint pain, skin problems and unwanted weight gain. My life saving GI doctor retired and I found an amazing new doctor from Greece. He’s been very supportive however, it seems that my case is a bit difficult. As if there is a simple case…we did discover that my Iron level was critically low and IV infusions remedied that. Vitamins B12 and D3 were very low as well and I take B12 injections and supplement D vitamins daily.

    We determined that skin cancer was all that I was getting from anti-TNF drugs so those were eliminated from treatment. I tried HUMIRA, again, with the same negative reactions as my first try. Finally, after my prodding about continued pain, tests showed 2 or 3 structures beyond my resection so I had surgery to repair those. Turns out, I had six strictures a a lot of adhesions and once I recovered, I’ve been doing fairly well, considering. I fight fatigue and joint pain all day, every day.

    I tried Stelara without success, as a last resort, to prevent the spread of Crohn’s and am currently taking no medication since most cause cancers, which I’ve fought with my skin for years. I’m scarred from removal and treatment of many skin cancers.

    I’ve decided that my quality of life is better served to avoid further symptoms from medication side effects and I believe my doctor has decided that he can’t help me unless I get very ill again. So, I have flares occasionally and treat the symptoms. I have eliminated dairy, most meats, corn and corn products and as much gluten and yeast as possible. I was tested by a medical allergist and found that I have sensitivity to several very common foods. It makes my diet very difficult but it is the single most effective treatment I’ve experienced. I hurt, but I seem to deal with it better if I’m up and moving as opposed to being still. I have days that I have to admit that I’m sick. But most days, I refuse to be sick. I try to get up and look like I want to feel and pray for a good day.

    I’ve resigned myself to not living as long a life as most, due to Crohn’s or prolonged medication use. My family is extremely supportive and encourages me to do as much as I can while I’m able. My husband is my hero everyday. He tells me I’m not sick. Makes me get angry and fight harder to be stronger. But he fights FOR me when I can’t. He asks God everyday to take care of me.

    If you have Crohn’s, or IBS, etc., you’re not alone. The struggle is real. I’m very blessed to not have worse health issues and I recognize that. I pray for anyone and everyone to find support and healing during your course with these diseases.

  • ClydeBaird
    11 months ago

    I too feel like there is no end, so I don’t expect total remission, I am thankful for the time that I’m enjoying now. Shorten bowel syndrome and all. I feel like I’ve paid my dues, and thank the lord every day

  • Natalie Hayden moderator author
    11 months ago

    Likewise! Wishing you many feel good days ahead!

  • rebekahred
    12 months ago

    I spent the whole time reading this article saying “This is me. Finally I find validation”. My doctor is ditto..no blood, no problem. Thank you for sharing. It is scary to put ourselves out there and speak our truth. You are very brave.

  • Natalie Hayden moderator author
    12 months ago

    I’m so glad my words resonated with you–it’s always comforting to know that our pain and inner thoughts are not isolated to just ourselves. Thank you for the kind words!-Natalie

  • anthony.carrone
    12 months ago

    Hi Rebekahred!

    I’m so glad you found Natalie’s article validating! Thanks for being an active part of our community!

    Best, Anthony (Team Member)

  • ddingledy
    1 year ago

    Natalie,
    Your article was very well written and appreciated. You put into words things I have experienced in my journey with Crohns. I was diagnosed with Crohns in my early 20s. I am now 66. Crohns research has come a long way since then, even though it may be hard for some to see that. I have two grown sons and the months I was pregnant were wonderful. I’ve had 3 surgeries since then, the first for a perforated bowel and last for adhesions. I am still working and other than daily Imodium, management is much easier. I would not use the word Remission to describe it because I deal with the side effects of several surgeries and I am aware of my limitations as far as what I can eat, but I am so grateful to be at this stage.

  • Natalie Hayden moderator author
    1 year ago

    Thanks so much for your kind words, so glad you enjoyed this article. I always love connecting with people who are in their 50’s and 60’s and hearing about how they went through their adult years with IBD. I was diagnosed at 21…and I’m not 34. I love knowing you had two sons, I have on son so far. 🙂 So sorry to hear you’ve had to endure three surgeries and recoveries, but glad your symptoms seem to be tolerable. It’s amazing how far we come from our initial diagnosis day. Wishing you many feel good days ahead!

  • Sickforever
    1 year ago

    I personally don’t believe I have ever been in remission. Crohns is very prevalent in my family and is on both my mother and father’s side. I come from a family of 8 brother’s and sister’s, 5 of us have crohns.3 of my niece’s and nephew’s have it also. I also feel very angry because the doctor’s love to use the word remission after my countless colonoscopies. If I am in remission then why am I having to take pain meds and nausea meds everyday ??? As for biologics, they scare the heck out of me ! I worked in the medical field when I could still work but was exposed to T B from an unknown patient, even though the TB wasn’t active on my chest xray the CDC said I had to be treated because of my crohns. For 9 month’s those meds almost killed me, so now as far as the biologics do I really want to take the chance of taking them and my TB becoming active ??? I don’t think so ! I think I have been on every medication they make for chrons but nothing has ever put me in full remission. I get up every morning thinking what is today going to bring. I am tired of being tired ! I for one would like to have the energy to get out of bed and do all the fun thing’s that I’ve missed out on ! Thank God for my family that is so understanding, but many other people have said ” you look ok ” . this disease is so confusing to me too, after all these year’s of finally being diagnosed you would think I would be able to figure out what helps me live my life but I really no different than I was 30 year’s ago !!!

  • Natalie Hayden moderator author
    1 year ago

    Wow! Big family–amazing how it runs in some families…and in others people are the first people to have it. (That’s the case for me)…Even when we’re in “remission” we still have the disease, it’s chronic…and always a part of us. Maintaining the remission is made possible thanks to the medications. If you are needing pain meds and nausea medication, I wouldn’t call that remission–because you are still feeling symptoms on a daily basis. Since I’m not a doctor, I can’t speak much about biologics and your TB situation, but that would worry me. I have been on Humira over 9 years and have never an an issue with infections or my immune system–but everyone is different. So glad you have a strong support system–that is huge–and the best medicine of all! 🙂

  • 2 years ago

    My father had Crohn’s of the small bowel for over 25 years. He only needed surgery once just for infection and never had any bowel removed despite having terrible strictures throughout. He only took medicine after his intital diagnosis and again towards the end of his life. He had essentially an ongoing form of remission for most of his life after being diagnosed. He had mild flares but nothing that a weekend of bowel rest didn’t fix. Dad lived with his disease better than most of his GI doctors believed possible for a man who was classified as severely afflicted by this disease. Unfortunately last year he suffered a massive stroke and we discovered bowel and liver cancer that took him in April. In the end his Crohn’s probably played a significant role in his passing as cancer and stroke are both potential effects from Crohn’s. Now my sister and I both have Crohn’s and both use Humira post surgery to keep ours in remission. We have learned from our dad’s experience but recognize that everyone is different and we just take it one day at a time and pray for the best.

  • Natalie Hayden moderator author
    2 years ago

    Wow, what a powerful story and God bless your dad. Being that it’s so prevalent in your family you must all be such great advocates for one another. I’m hoping I won’t need any additional surgeries following my bowel resection (and taking Humira also)…fingers crossed! I feel like the first surgery is the hardest because there’s so much fear of the unknown.

  • Drew
    2 years ago

    I am a Crohn;s patient and I have been in remission for 47 years. When I was 20, I had surgery and had 3 1/2 feet of my intestine removed, which involved the distal ileum and the upper colon. Afterward, I was told to take Azulfadine , which I refused because I did not want to take 6 big pills at a time. Since that time, I have been on 2 Lomotil pills taken each morning for diarrhea. The over-the-counter medicines do not work. In the intervening years I have had one operation for a fistula and fissure about 30 years ago. I have also had 3 intestinal blockages because I have a narrowing of my intestines where my surgery occurred. Kidney stones are the only other problems I have had. I have not lived in the town where I grew up for any length of time since my surgery, so maybe I have not been exposed to whatever what was the trigger for my disease in the first place.

  • Natalie Hayden moderator author
    2 years ago

    Thanks for reading my article, Drew! Remission for 47 years…that is AMAZING. Hearing your story makes me hopeful for the future.

  • cherielynne
    2 years ago

    Thanks for this article. I dont know what amount of time passed is considered remission but I dont feel like I have had total relief of symptoms longer than a few months. I experience degrees of relief but never total remission for over 15 years. I was told early on my level of disease was very aggressive. I am in a stage again when no drugs are working and I have had allergic reactions. So discouraging. I continue but am finding more relief by altering diet/ removing processed food and trying alternative medicine including aromatherapy and hypnotherapy, reducing toxic chemicals in my household and personal products. Thanks for covering this topic

  • Natalie Hayden moderator author
    2 years ago

    Thanks for your input, Cherie! It certainly is frustrating when you feel like nothing is relieving symptoms and when “remission” is short-lived. I find it’s best to take it a day at a time and try to focus on the feel good days in between. I hope you’re able to find what works best to keep your disease at bay. It’s so complicated–and exhausting, but you are your best advocate…and know what is best for yourself! Always remember that. 🙂

  • Bruced62
    2 years ago

    Remission. I believe it’s a timing thing. I have been in remission many times in past 22 yrs. According to my Drs. My biggest problem is I get on a treatment plan and am told I am in remission. However for some reason my body always rejects medicine after about a yr or so. Then out of remission but yet again. I have had 8 surgeries on my small intestines to the point I have almost none left. Now it’s in my colon. I have been on Stelara now for about 7 months. Felt great but now it seems symptoms are creeping back. So that’s my view of remission. Don’t use it for our deases

  • Natalie Hayden moderator author
    2 years ago

    Thanks for your comment, Bruce and for reading my article! Remission is certainly something that’s a challenge to understand when it comes to Crohn’s and ulcerative colitis. I find I take that word with a grain of salt. Eight surgeries, wow. I hope you’re able to find a biologic that helps manage your disease better. I’ve been on Humira since July 2008 and it’s been a great drug for me. I added Lialda to the mix after my resection in 2015 and it’s been a good combination. Obviously, with our illness, no two people are different. Always important to consult with a doctor and see what the next course of action is. Wishing you many feel good days ahead!

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