Questions! 

Hey everyone! Sorry I haven’t posted in a while, I took a break to spend time with family for the holidays! 

This morning I made a post on my Facebook asking friends to ask and submit questions they’ve had but never asked about my ileostomy, and I’m going to answer them here and now! 
Question one: Why did you have to get the ileostomy? 

So, I had to get my ileostomy because my Crohn’s disease was progressing, and I had gotten a second perforation in the same spot in my small intestine that caused sepsis. The doctors all decided that I needed the surgery to ultimately save my life, and they cut out over two feet of diseased intestine(plus my appendix), and gave the ileostomy to let my colon rest a bit. 

Question two: Is it painful/uncomfortable? Can you feel it every time you move? 

It’s not painful per say. Like it hurts when changing the bag if I don’t use my medical adhesive remover spray. And sometimes the surrounding skin hurts when it’s irritated, but that’s mostly itching. Can I feel it every time I move? I feel the bag, not the Stoma itself. The Stoma (his name is Charlie), doesn’t have any feeling really, I can feel pressure. The only time it hurts is if there’s pressure being applied directly to it (like if my son accidentally puts his weight there. 

Question three: How does it affect your everyday life? What you eat? Your shower routine? Going out to eat? Does it affect your relationship with your husband or son? Side note- my mom had a pee bag and I had to help her saran wrap up so she could shower and change the dressing on it for her.

It doesn’t affect my daily life too much, just that I have to make sure there’s a place I can empty my bag wherever I go, and I have to carry a little pack with extra supplies in case I spring a leak, but that’s not too bad because I keep the pack in the diaper bag. I can eat whatever I want at this point, just have to be sure to chew everything very well. My surgeon said he’s only ever seen an obstruction once (and he’s been doing this for YEARS) and that was an elderly woman with no teeth who swallowed a whole piece of broccoli and it got stuck! Haha! Going out to eat, is fine! I just empty my bag before I leave the house, and leave the restaraunt. Showering I can wear my bag, or I can take it off. I’ve gotten more comfortable with taking my bag off before getting in the shower and then putting a fresh one on when I get out. It lets my skin get some air, and it’s nice to shower completely naked 🙈. My relationship hasn’t been effected with either of them from my Stoma. The only thing is, is that I had to stop breastfeeding my son due to me getting malnourished for it (I weighed 77 pounds). 

Question four: What does the actual Stoma feel like? 

Honestly, it feels kinda like jello. It’s funny. 

Question five: Can you feel when you’re pooping? 

No, not really. Not unless it’s really gassy and it’s making bubbles. A lot of times I forget about it all until I stand up and feel the weight of my bag pull down. Then I go empty it. 

Question six: This is kind of TMI but is it like hard or liquid or what? 

TMI questions are totally fine with me! It’s usually liquid, some times thicker than others. Depends on how much liquid I intake. Thickest I’ve ever seen it is like pudding consistency. 

Question seven: Are you often embarrassed by it? 

Nope, I used to be embarrassed if it would show under my shirt or something, but honestly I don’t care anymore, plus I have a pretty cool bag cover I can wear! 
That’s the end of the questions for today, and I TOTALLY loved them! If anyone has any other questions, feel free to comment or send me an email! Crohnswarrior2016@gmail.com

Advertisements

11 Thoughts About My Ostomy I Think Daily. 

It’s been a while since I’ve written, life has completely gotten nuts. Between my sons second birthday, him having strep and now having fluid build up in his ears(again), his second year doctors appointment gone wrong, him catching a nasty cold, my husband catching a nasty cold, them giving ME the cold which I feel is slowly developing into bronchitis (every day I feel it move lower)…life’s just been hectic. But it never fails that these thoughts run through my head at LEAST once a day. 

1) Uhm, is my bag leaking!? 

2) Well…looks and smells good, but I can’t eat it. 

3) Is that just an itch? Or a leak? Nope, definitely an itch. 

4) Is that sweat or a leak? 

5) Do I smell like my output!? 😳

6) Is that smell from gas coming out of my filter….or did someone else fart? The world may never know. 

7) What. Are you serious!? Full ALREADY!?! I literally JUST emptied 15 minutes ago -_- 

8) Is that blood? That’s definitely blood. No, wait…..I drank some red Gatorade earlier. Phew. 

9) Whenever I’m standing above the toilet to empty my bag, all I can think is “this is what it must be like to be a man taking a whiz”. 

10) When I’m walking briskly with my bag 1/4 full, and it’s just swinging around, all I can think is “this is what it must be like to be a man running with a limp dick.” Excuse my bluntness and crudeness. 

11) Hehehehehe, that tickled (whenever I cough or sneeze, my Stoma spits out bubbles. It tickles quite a bit 😆). 
That’s honestly a day in my brain (minus all the toddler antics and cuss words that pass through).  Although these aren’t ALL of my thoughts, not all of my thoughts on Charlie, the Stoma…these are the more silly and practical ones. Maybe one day I’ll write more in depth on my daily thoughts on Charlie, but for now- my positive ones will do! 

I’m Faking Being Sick? No, You’re Faking Being Supportive. 

Hi there! Me again! I had planned on making an entirely different post, on an entirely different subject- up until about three minutes ago. I saw a post from a woman on one of the Ileostomy support groups I’m in, and oh boy did it anger me! She stated that one of her “friends” had accidentally texted her talking smack about her and her disease, which is Crohn’s. If there’s one thing I cannot stand, it’s when people say that those with Crohn’s are just faking it. So sit down and hold on to your skivvies while I do some educating and questioning those who seem to know so much about Crohn’s and those who “fake” it. I’m not going to apologize for language either, because this shit irks me. 
First of all, I have a question. Can you describe to me, in full detail, what the HELL am invisible/internal disease looks like on the outside, to those who are not practiced in Gasteroenterolgy (or whatever internal speciality is needed)? Because I’m pretty sure that on the outside, we look just like you (except sometimes we have scars on our stomachs from surgeries, and sometimes even a bag that covers a piece of intestine and catches our bowel movements because well, it’s the only way we’re still alive). Also, who the hell are you to determine what days we can and can’t, or should and shouldn’t feel “good”? We can’t even determine that. Sure, we can fake feeling good for everyone else’s benefit. But some days, we just give up and let our bodies take over, and that’s OKAY. We don’t have to please you every day. And sure, you may ask on Tuesday the 12th if we are busy on Friday the 22nd, and we may say “no I’m free!” But then two days before we get a call from our Doctor saying “hey your lab work came in and you need to come in ASAP, does the 22nd work?” Or we may have an appointment and the day before or day of, the doctor calls us saying “hey- we need to reschedule” and then we’re free to hang out. But do not claim that we fake our diseases. 

Here’s the thing. Our bodies control us, we don’t control our bodies. Trust me, I wish we could control when our organs inflame, or blood throws a clot, or potassium levels drop, or iron levels drop, or hemoglobin levels drop, or whatever else. Because the second one of those drop or swell up- we know…it makes us feel like an absolute giant pile of horse crap, sometimes bad enough for us to head to the hospital. It’s not something that’s always easily treated at home- although we wish it was as simple as your common cold or stomach bug. Heck, a simple cold turns into pneumonia  in the blink of an eye for us. If you’d like to get a general idea of what it’s like with Crohn’s disease – use your imagination here for a moment. Think back to your absolute worst stomach bug, where you’d try to eat something and 30 minutes (or less) you were running to the bathroom to simultaneously have explosive diarrhea and projectile vomit…now intesify the stomach pains and burning butthole by about 50%, and THAT is the average day of a crohnie. Why wouldNew fake feeling like that? Take those pains, the nausea and vomiting and the diarrhea- now try to live a normal functioning life, like driving to work 30-45 minutes away, working a demanding job that you can’t run to the restroom every time you feel you gotta go, and deal with with difficult clients/customers..take care of children and the house and cook dinner and feed the pets and walk the dog, and so on and so forth. Sounds pretty shitty, literally, huh? Yep, it’s why a lot of people with Crohn’s disease (who aren’t in remission- these are the people I’m referencing btw), don’t work. Some are even on disability because if t weren’t for this incurable disease, we’d be working. 

Touching on the disability- yes, some are on disability. Why? Because if it wasn’t for this disease, they’d be working. But- as I’ve mentioned above, this disease controls us- we don’t control it, we have ZERO control over any of it (sure we can manage it with medication- but it doesn’t work for everyone). Some people don’t work, and don’t have disability. Why? They don’t qualify. Why? They are young and haven’t worked enough prior to needing the disability. How fucked up is that? Someone who’s simply overweight (no underlying health issues either) can get disability because they don’t want to work, exercise or eat healthy, but someone who’s actually sick and can’t work because they are sick and in the hospital (and have been let go from jobs before due to being sick too much and being in the hospital too much), can’t get disability. Yes, I know this overweight person has no health issues other than being obese due to personal choices, because I know the person. The system is seriously so messed up, but I won’t get into that. 
Anyways, I encourage you to do research on Crohn’s disease. It’s an auto-immune disease, meaning our immune systems suck, and attack itself. Not cool, body. Not cool. I know I can’t wait for the day they find a cause, and a cure. If you’re someone who’s accused a friend or family member of faking their disease or symptoms, are a crohnie/chronic disease sufferer and/or have questions- please comment below or email me at crohnswarrior2016@gmail.com and I’ll be happy to answer any questions you have! I promise, I’ll be nice, and helpful! 😊
To my fellow sufferers/warriors: forget the haters, keep your chin up and fight on 💪🏻 I have faith in you. Don’t ever hesitate to reach out to me if you need someone to talk to! I promise I’m a nice person 😊😊

16 Things People With Crohn’s Disease Hate To Hear You Say

This is truly not meant to offend anyone, but just to help maybe, spread awareness (for lack of better term) as to what really just makes us roll our eyes and just really gets under our skin. 

If you know anyone with Crohn’s disease/IBD and you’ve said these things- I’m sorry, but we’ve cursed you under our breath. Don’t take it personally though. 

Just a forewarning…I’m probably not going to sugarcoat my “responses” to these either. Haha. 
1) “I read online that ______ will help.” Oh. Yes. Because My doctor and I never thought of that. *eyeroll* 

2) “You’re always so tired. Try drinking some caffeine or going to bed earlier.” Ya don’t say. I promise, some days caffeine just won’t help, and honestly…why become addicted and dependent on caffeine just to please YOU. 

3) “Just Get Over It.” No. Get over YOURself. Bye. 

4) “I’m tired of you always not feeling good.” I’m tired of you complaining of my illness that I can’t help. Trust me, if there was a cure, I’d be first in line to be cured, no matter how much it would cost. 

5) “You being sick always ruins MY plans.” And your negative attitude ruins my day. 

6) Hearing your “diet” advice. If you’re not our nutritionist, GI, or dietician who are familiar with our case…please keep your unwanted advice to yourself. However, if you offer a food item, but then say “oh my gosh! I didn’t even think, I’m so sorry is this something you can handle?”…it’s a totally different story- but you’re genuinely concerned and not offering unsolicited advice. If we want diet advice- we’ll ask for it. 

7) “I know this guy who knows this girl who has a cousin who has a boss that has Crohn’s disease, and they went totally gluten free and they’re like basically cured. So you should really try that if you honestly want to get better.” …..-_- because we’ve never thought to try gluten free- even though a lot of us show markers for Celiacs disease, and that’s what diet we get put on most of the time before we even get a Crohn’s disease diagnosis. 

8) When you say, with a totally straight face being 100% serious, XYZ can “cure” Crohn’s disease….sorry but no. 

9) “Have you tried ItWorks/Plexus/BeachBody/etc? It cured my cousins uncle of their Crohn’s disease!” Oh. It’s funny that EVERY consultant for those have a cousin with an uncle who “had” Crohn’s disease, or a cousin who “had” Crohn’s disease. It’s funny you won’t show a testimony, or that they haven’t gone to their doctor or research hospital and said this is what I did and I’m cured. No. Because they can’t. Sure, it may have helped someone achieve REMISSION but guess what, they’ll snap out of remission one day. No two Crohn’s cases are the same. And I’ll say it again for anyone who still doesn’t understand.. THERE. IS. NO. CURE. FOR. CROHN’S. DISESE. 

10) “…but you don’t LOOK sick..” Oh. Can you please tell me in detail what an invisible and internal illness looks like on the outside? 

11) “I thought Crohn’s made you thin.” Medications make you gain weight, therefore not everyone with Crohn’s is thin. PLUS when in remission (still have Crohn’s disease) you’re more likely to gain weight as your bowels are working more properly. 

12) “It’s all in your head. You’re just making yourself sick.” Why. The. Fuck. Would I make myself sick? Attention? Puh-lease. There are far less weird ways to get attention than to “fake” such a complex disease? It would be easier to fake cancer honestly.

13) When people who are fine (meaning, don’t have IBD) say “oh man my tummy hurts today, I know how you feel”. No. No you don’t. Truly, honestly. Your “bad day” is equal to my “good day”. 

14) “Cant you just hold it?” Nope, I cannot. Otherwise I’ll be holding it in my underwear while it’s also leaking all down my legs and in my shoes and on the floor. Shall I smear some on you too for making such an insensitive suggestion? 

15) “Didn’t you JUST go?” Probably, but why does my frequency of shitting pique your interest? 

16) “I have IBS, I know EXACTLY what you’re going through”. Nope. Wrong. You don’t. There’s major differences in Irritatable Bowel Syndrome and Inflammatory Bowel Disease. Irriatable Bowel Syndrome doesn’t cause any physical damage to your intestines, doesn’t cause any bowel inflammation, and is managed by diet. Inflammatory bowel disease affects from your mouth all the way down to your butthole, causes major bowel/intestine damage, and causes many other additional problems (see my previous posts!) due to our immune systems attacking themselves. While yes, we do sympathize with y’all, because trust me- WE know how much stomach issues SUCK, please don’t say you know what we’re going through. 
If this hurt your feelings, I do apologize. I just hope you realize that those things listed above- really hurt our feelings. If we could control this disease- or find ways to help manage it- we’d be doing it. 

A special thanks to: Megan B, Tyler E, Khloe P, Kimberly R, Kristy S and Amanda R for all helping me compile this list. 

Feel free to leave comments below- or email me at: crohnswarrior2016@gmail.com

10 Ways Crohnies/IBD’ers Live Differently Than You

Crohn’s disease is SO much more than than just a “pooping” disease. Yes, some of us poop more often than “normal people”, and others get chronically constipated. Shit happens. But there’s more to it than just the bowel aspects, as Crohn’s is an auto-immune disease. Our immune systems literally attack our bodies, making us more prone to developing other illnesses, diseases, infections, syndromes, disorders, and so on and so forth. Things such as anemia, arthritis, oral issues, skin issues, blood disorders, clotting issues, infertility (temporary and permanent), paralysis or loss of limb function, extreme weight loss (or gain), and so so so much more. 

Here are some basic ways we live our lives different than “normal people” 
1) We see doctors. A lot. Like, once a month, if not more. And it’s more than just a quick pop in with our primary care doctors, although we do that too. We see our GI’s, blood specialists, pain management (because who really wants to either live in pain, or become addicted to pain medications), ortho, physical therapists, dermatologists, infectious disease, nutritionists, surgeons…you get the point. Our insurance companies probably hate us. 

2) We keep a spare set of clothing (undies and all), in our cars…a couple trash bags too for those (literally) shitty days we have an urgent situation and cannot make it to a rest room in time. Toilet paper too for those long drives home when you just gotta pop a squat in the tree-line along the road.  

3) Every single place we go, and I mean every, we IMMEDIATELY scope out the venue for where the rest rooms are. 

4) We try our best to stay within a 5 minute distance to the bathroom. 

5) The ER staff knows us by name when we come through the doors. 

6) We watch what we eat. Constantly. Even if we absolutely love something, we steer clear of it. And while in September I may have said “no way Jose” to spaghetti, I very well could be perfectly fine eating it in October, because that’s how unpredictable this disease is. One week/month/year something may bother us, and the next it doesn’t affect us at all. 

7) We have our good days, where we feel invincible…on top of the world even. But then we have our bad days…and our bad days are BAD days. Call out of work, can’t get out of bed, can’t eat, can hardly drink, screaming and crying in pain kind of bad. 

8) We fake smiles daily. When asked “how are you?” We just smile and say “I’m good! How are you!?” Even though our pain level is about a 4 or 5, but we don’t think anyone ACTUALLY cares to hear “well, I’m in a great deal of pain, I want to be in my bed, not socializing, and hardly existing. 

9) We can’t take ibuprofen, Motrin, or any other NSAID. Our over the counter pain relief option is basically Tylenol. And that’s it. Or our doctors will prescribe a Tylenol based narcotic. NSAIDS cause ulcers. Ulcers cause pain, and flares, and many other issues. And then, our “management” or “maintenance” medications are pills (which can cause cancer), chemo (which kills cancer), or giving ourselves shots. 

10) We often get accused of being “junkies” or “druggies”, as some of us are extremely thin (due to our disease and isn’t by choice and it’s a struggle to gain the weight back), and have multiple IV scars in our arms, hands and feet. As we are often needing blood draws, fluids for dehydration, iron transfusions, blood transfusion, IV medications, IV nutrition, etc. 
There are many more than 10 ways we live differently than “normal” people. These are just some basic ones I can think of, based off of my own experiences. Feel free to leave feedback in the comments or email me at crohnswarrior2016@gmail.com 

It’s Only The Beginning

As some of you know, and some of you don’t know, I have Crohn’s Disease. I began showing symptoms in 2010, and was officially diagnosed in 2012 after being misdiagnosed twice and treated for other things (first was intestinal parasites, second was Celiacs disease as my bloodwork did show the markers for that). The antibiotics obviously didn’t work, and going on a gluten free diet didn’t help, and just made me cranky because I was missing all of my favorite foods (popcorn chicken, hamburgers, chocolate cake) as they didn’t have such a WIDE variety of gluten free foods even back then! 
I was 17 and had just graduated high school at the time of my diagnosis. I had gone from a comfortable 110-115lbs to 90-95lbs in just a few months time. So far, it had been managed by a few difference medications in pill form. Pentasa was one I distinctly remember due to the sheer size of it. I continued to take those through around December 2012 when I stopped because it didn’t help me at all. I was a freshman in college at this point, and was starting to feel better once I stopped taking them. I started to gain weight back, less frequent bathroom trips, started feeling “normal again”. Then came June 2013. I was had been having pretty bad back pain for a couple days, and just thought I’d pulled a muscle as I was working on a lobster boat, working on my home towns volunteer fire department working in the kitchen of a nursing home, working as a CNA, and was starting another job waitressing. One day, as I was attempting to get ready for training for the waitressing job, the pain was awful. I couldn’t lift my left leg to put on my sock, or tie my shoe once my sock was finally on. I couldn’t bend over to do either of those things, it hurt to sit, it just hurt. I was in tears. I KNEW something was wrong. I called my mom and told her I was going to the emergency room, she honestly didn’t think it was anything serious. Not wanting to bother my local FD, I drove myself to the hospital. They made me take a pregnancy test, even though I told them I certainly was not pregnant- and I was right. They finally administered morphine via IV. I needed to get up to use the restroom and a nurse helped me, and soon as I got back and sat down on the bed I SCREAMED because just the action of sitting sent pain shooting to every part of my body. It was a pain I never wish to experience again. They wouldn’t give me anything stronger, even though now at this point I was writhing in pain. Around 10pm, one of my primary care doctors came in and ordered them to give me something stronger and to admit me (I had been in the emergency room for about 5 hours at this point). Finally they gave dilauded and I was comfortable. They sent me upstairs to be admitted. I had a severely swollen ileum causing all of the pain. I was released after 6 days, had a colonoscopy after a few weeks and all swelling was gone. 
I became pregnant with my son in 2014, and went into remission during my pregnancy, and was in remission until 2016, only symptoms being loose stools and weight loss- but I was also breastfeeding. Around April 2016 I began getting cramping that would come and go, and it was pretty bad. I made an appointment with a new GI as I had moved from Maine to Virginia and hadn’t yet established a GI doctor. Had a colonoscopy, and that showed that my Crohn’s had spread from my small intestine to my large intestine and was currently active. We decided to start me on Remicade, which is an IV medication that is low dose chemo. I got through three rounds of that, and ended up hospitalized. I’d had a perforation, which led to sepsis, as well as little pockets full of fluid on my intestine. I needed drains in my chest due to fluid build up, and a drain in the pockets to get that fluid out. I was released after two weeks. It was a terrible stay and I have terrible memories from it, but I won’t get into that. I continued to lose weight though, dropping to 86lbs. I started Remicade again. Things were going well, but again after three rounds, I began to get sick again and was hospitalized. For the same thing. Perforation, which lead to sepsis. They decided to do surgery on me. They started out going in laproscopicly, then ended up cutting me open (they went through my c-section site), and removed over two feet of diseased bowel plus my appendix (didn’t need it anyways, and might as well take away the risk of appendicitis while they’re at it, right!?), and left me with a temporary Ileostomy to let the rest of my bowels rest and heal up. I continued to lose weight, lowest point being 77lbs. Yes. 77 POUNDS. Finally, at almost 2 months post-op, I’m up to 84 pounds, and hoping to get up to 95lbs again! So far, I’m feeling the best I’ve felt in years, and I’m loving it! 

If you’re a fellow ostomate, soon to be ostomate, or just someone with Crohn’s/IBD…never give up! This is a hard journey, and sometimes it’s hard, so hard, to wake up and put a smile on your face, but remember this…you woke up! You have air in your lungs, thoughts in your mind, and love in your heart. Each day is a true gift, too many fellow warriors have lost their lives to this horrid disease. 

Here’s My Why

This is the excerpt for your very first post.

Hey everyone! So I’ve decided to start a blog, as you can tell, to share my experience, day to day life, inspiration, and a few good chuckles about my life with Crohn’s disease and what it’s like living with an Ileostomy! My main purpose isn’t to talk about myself to gain sympathy, pity, or to say “poor me”, but rather to let others in the same situations know that they’re not alone, they can get through this, and to never give up- no matter how hard it gets and how badly you want to.

Day to day life with an incurable disease, or a bag of literal shit with you every day is hard. Really hard. Mentally and physically. But it’s doable, and that’s what I’m aiming to do, help those living through this, live through this! As well as help those who AREN’T going through all of this understand what it is we go through on a daily basis. How you can be supportive without annoying those who do, because trust me- there are times we just have to roll our eyes and say “yeah, right, please just shut up and go away because you have NO idea.” But I’ll discuss those in a later post!

I truly hope that my future posts DO inspire others to just smile through all the bad shit (pun intended), and rejoice in the good.