Q&A: Answering your questions about Crohn’s

This week we are going to change things up a bit with a new, monthly Q&A feature. I am partnering up with an Instagram account known as “our_life_with_crohns”—the social media account is a great resource and allows you to interact in real time with those who are searching for a diagnosis and those who live with Crohn’s and Ulcerative Colitis.

Thank you to “our_life_with_crohns” for allowing me to respond to questions posed on the site. Before we get started—I want to remind my readers, I am not a medical professional, I don’t pretend to be. My responses are all from my personal experiences, advice and recommendations from doctors I have seen and the research I’ve discovered since my Crohn’s diagnosis in 2005.

Q. Hi! I am currently in the midst of struggling to get a confirmed diagnosis for Crohn’s from my doctor and I’ve been on prednisone for eight weeks and have felt amazing relief and would consider myself in remission, as I experience essentially zero symptoms. He wants to do a capsule endoscopy to confirm the Crohn’s now, but I’m worried it will show up negative if the prednisone has taken care of the inflammation and put me in remission. Will the endoscopy show Crohn’s or will it come back negative?

Natalie: Getting a diagnosis is a difficult part of the journey and so is being on prednisone for eight weeks. While that steroid is excellent at combating inflammation in the body—it’s not a long term solution for healing or for controlling your health issue. Long term steroid use is incredibly detrimental to the body. Unfortunately, many Crohn’s and UC patients are repeatedly put on them—but over time they take a toll. To give you an idea—I was diagnosed with Osteoporosis this year—the longest I have ever consistently been on steroids is three months. I would be hesitant to throw around the word “remission”—you may have a false sense of hope from the steroid, and the relief could be temporary. As far as the capsule endoscopy—I would also be hesitant to undergo that test. While you may be feeling better and your inflammation seems to be down, there is always a chance the capsule could get caught along the way and need to be surgically removed—especially since your diagnosis and health is a bit of mystery right now. In my opinion, your best bet is an abdominal CT scan and a colonoscopy. The doctor can biopsy cells during the colonoscopy and then you both will have a better idea of what you’re going up against.

Q. Yesterday I went to my GI and he set me up for my fourth colonoscopy and endoscopy next month. He is doing it to determine if I’m having some of my intestine taken out—and moving Remicade up to six weeks instead of seven. My question is—what should I expect from the colonoscopy? I have been lucky for five years to have nothing removed, but he said I’m really severe.

Natalie: In hearing this I’m curious about when your previous colonoscopy was? In order to determine if I needed surgery last summer, I underwent an MRA (Magnetic Resonance Angiogram) while I was admitted—rather than a colonoscopy. A CT Scan showed a bowel obstruction and then they performed the MRA to see if surgery was necessary a few days after IV steroids and antibiotics. The MRA was able to show how much inflammation and narrowing I was dealing with throughout my small intestine. I went a decade without surgery. The thought of it petrified me. While it’s daunting and not easy to endure—it will give you a fresh start and it’s the best thing that ever happened to me in regards to treating my disease. The 18 inches of diseased intestine would have repeatedly caused me pain and bowel obstructions, it’s great to know that while it’s not a cure, you get the damaged part of your digestive tract out of you (at least for the time being!) I always thought I was lucky prior to surgery—I felt the luckiest, after.

Q. I just started Humira and completed my second dosage on October 7th. After the first initial dosage, I had extreme diarrhea after eating. I called my GI because it wasn’t normal for me. He told me it was too early for my body to react to the Humira. After the second round of shots, I’ve thrown up four times, still have diarrhea and a low grade fever. Fever has come down, but still super bad. Not sure it it’s just a really bad flare or a bad reaction. I have other symptoms as well. However, my GI isn’t much of a help.

Natalie: That’s too bad your GI isn’t being more helpful. I have been on Humira since 2008. My reaction to the initial loading dose was terrible. I didn’t have enough energy to go up the 13 stairs in my apartment, I was going to the bathroom non-stop and it looked like a weird black-tar substance. My Mom and I were really concerned and we weren’t sure if my body was responding how it should. Whenever you experience a side effect that alarms you—you can contact a registered nurse on staff at 1-800-4HUMIRA (1-800-448-6472). They like to keep track of all side effects so they’re on record and can provide you great peace of mind. Luckily, after about two months—I didn’t experience any of those symptoms. In the past 8 years, when I’m ready for an injection or after I give myself one—I experience no side effects whatsoever. Think of the loading dose as giving yourself 4x the normal dosage of medication—that’s a lot for your body to take on and get acclimated to. Every person responds differently the first time they take a biologic. If you continue to notice the fever, diarrhea, and vomiting I would continue to alert your doctor and also get a second opinion if he/she is not responding to your needs. The loading dose is the most difficult part of Humira to go through. Click here to read a previous blog post with tips to ease the pain.

Q. I have a new boyfriend and he knows I have Crohn’s but he doesn’t really know what it is. I have to admit I’m a bit nervous about explaining it to him, but I also don’t want him to look it up. Does anyone have any advice?

Natalie: I understand the apprehension, but this should be an early conversation with your significant other. You’ll quickly come to find out whether he has what it takes to be a compassionate, patient, and thoughtful partner as you battle your chronic illness. When you share the news it will shed light on his character and provide great perspective. If anything—think of this as an advantage. You can weed out the guys who don’t genuinely care about your health and well-being easily. While you may assume every friend and significant other will handle the news a certain way, each person deals differently. It can be disheartening when you come to realize that the person you really care about is absent and nowhere to be seen when you’re in a hospital bed fighting a flare, facing surgery or dealing with a new diagnosis. One of my ex-boyfriends never visited me once when I was initially hospitalized and diagnosed and broke up with me while I was being wheeled out to my parent’s car to go home. Another ex told me gas prices were too high and he preferred to fish, instead of coming to visit me when I was facing surgery with an abscess. In the moment—it hurt, but looking back I feel so grateful I was able to see that about their personalities THEN and dodge the bullet(s). When I met my husband and he embraced all my hardships and hasn’t left my side for one day or night during any of my hospital stays—I was blown away…and still am. You need to find someone who understands your health struggles, someone who is willing to be there through tough days, but also reminds you that better “feel good” days are ahead. If he wants to look up more information online—that is normal, and I wouldn’t shy him away from doing that—it’s good that he wants to educate himself. But, share how your personal disease process is—in comparison to what he may read. Every person’s disease is different. You got this! Good luck!  You’ll be so much more at ease when that conversation is behind you. While it’s not your identity you and I both know it’s a big part of who we are!

Q. Can someone tell me what a blockage or bowel obstruction feels like? Any time I put something in my stomach that’s not liquid I get what feels like bad trapped gas pains that’s between my middle rib area to my belly button. The only way I am able to get it to pass is taking 2-3 GasX tablets. I can go number two but it’s really hard to get out even after using stool softeners and laxatives because I can’t go. I have stomach pain, I’m nauseated but I’m not actually throwing up.

Natalie: Hate to hear you are going through so much pain—I know how miserable it is when you can’t eat without being in pain. That being said—a bowel obstruction is not something to be taken lightly and it’s such an unbearable pain that you almost have no choice but to go to the ER when you have one. By the sounds of what you’re describing it sounds like you’re in a flare up state and that your intestine is inflamed has stricturing that is making it difficult for food to pass through for proper digestion. I’ve had several bowel obstructions and they all present similarly. Anytime I eat I get a wave of nausea and it starts as a dull gnawing pain throughout my abdomen. The pain does not subside and carries over from day-to-day. When I notice this going on I put myself on a liquid diet at home to rest my bowels. At the peak of it all—I usually get to be in so much pain that I’m practically blacking out. The pain goes from gnawing to stabbing pains—pain level of a 10. The last two obstructions I had, I lost all feeling in my arms and legs and don’t even have memory of some things. I almost go in a state of shock from the pain and I’m unable to stand up straight. They can’t get the IV in me fast enough when we arrive to the ER, I’m always rushed back immediately—even when the ER is completely full. I always vomit and sometimes I have a fever. I’ve never been instructed to take any type of GasX tablets or laxatives—if anything I’ve always heard to abstain from using them. I would make sure your doctor is aware of what you’re going through. Also make sure you get medication that properly manages your disease process so you can have an improved quality of life.

Have a question about Crohn’s that you’d like some advice about? Email me at lightscameracrohns@gmail.com.

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