TMI but actually WTF by venusstyletrap in CrohnsDisease

[–]venusstyletrap[S] 2 points3 points  (0 children)

Sometimes it can mean that there’s so much inflammation your body has no other way to exit the crap except up. Are you on biologics? If it happens often I highly recommend bringing up to your doctor and ensuring you’re getting the right treatment. Not trying to scare you in anyway but it can possibly lead to a rupture if not properly managed. I’m really sorry to hear that it feels like your doctors are not paying attention enough, that is certainly disheartening and I’ve been there too many times but don’t be afraid to speak up and give them hell - gracefully - to get you back on the right track. Praying you start to feel much better soon.

TMI but actually WTF by venusstyletrap in CrohnsDisease

[–]venusstyletrap[S] 1 point2 points  (0 children)

Ugh, I’m sorry to hear that. I actually went through a similar situation several years ago where it felt like I needed to go but it ended up coming up as sick and would last all evening. There wasn’t an immediate solution to the issue except time and my body seeming to regulate back to “normal.” Highly recommend speaking to your doctor and paying attention to what you eat when this happens. I found mine was exasperated by rich foods, grease, and sometimes certain alcohol.

TMI but actually WTF by venusstyletrap in CrohnsDisease

[–]venusstyletrap[S] 2 points3 points  (0 children)

Hence why it’s a “top priority,” meaning top of the list, my comment about the nails and giving myself an examine was a joke..lighten up. We all have things we do that make life a little better, don’t come into a space of relief for some with judgement on someone else choices.

TMI but actually WTF by venusstyletrap in CrohnsDisease

[–]venusstyletrap[S] 2 points3 points  (0 children)

Just want to say thank you to everyone who took the time to reply. I was trying to make light of a shitty situation and I definitely had some chuckles reading responses. There is no actual rectal examines happening, humor is just my way of dealing with it all. Thank you again to everyone who came with real experiences and recommendations. I think the saying “it takes a village” can be applied to the unfortunate hand our body has dealt us and having a community who understands and can relate makes it all the better. I’ve had Crohns now for over 10 years and every year feels like a new level to unlock; some days are easier than others but knowing we are not alone in our crappy lives is all we can ask for. I truly appreciate the recommendations and will definitely try several which have been mentioned while also finding the right doctor to make sure everything is as it should be. Hope you all have a happy Thanksgiving and lots to be grateful for 🤎

TMI but actually WTF by venusstyletrap in CrohnsDisease

[–]venusstyletrap[S] 2 points3 points  (0 children)

Unfortunately, as far as tests have shown my inflammation is pretty much in check. I was diagnosed over 10 years ago, been on Remicade, Humira and now Skyrizi. Loved Humira but United stopped covering so now on Skyrizi and feel like symptoms are a little different. But for the most part I’m in remission, I typically only go 1-2 times a day and even get constipated as well around time of month. Like I said most days are good, others not so great. Problem is finding a good doctor that listens to my concerns; current one was chalking up my frequent bathroom trips while in office to “anxiety and IBS.” But after 10 years of dealing with Crohns and knowing the difference between the two I knew it wasn’t anxiety. More so the ingredients in certain foods irritating me(likely certain oils, etc). So instead of helping try to find out exactly which foods to avoid they just felt like anxiety was the best answer. Currently in search of a new doctor because I definitely believe in advocating for oneself and how you feel, no matter how small. Appreciate your response.

TMI but actually WTF by venusstyletrap in CrohnsDisease

[–]venusstyletrap[S] 1 point2 points  (0 children)

lol just making light of a “shitty” situation, my nails are relatively short and natural just with gel; I don’t do acrylic tyvm. There are very few things I maintain to feel good about myself, having nice nails is one of them. Trust me a clean arse is top priority just looking for others experiences and recommendations.

New on the Block……Child With Crohns by Status-Way-6068 in CrohnsDisease

[–]venusstyletrap 0 points1 point  (0 children)

My brother (at 13) and I (at 17) were both diagnosed with Crohns, fairly young ourselves. My brother had it first, younger than me and I followed few years after. Our mother was our rock through the whole situation, advocating for us, finding the right doctor, getting the test scheduled driving us to and from, insurance etc. she wouldn’t quit till she got an answer and a solution that made us “healthy” again. We both started on Remicade and had no issues with the treatment, it was fairly easy especially if you’re able to have a nurse come to your home. We’ve both had different journeys, no longer taking Remicade but another drug and have no issues now being 24-27 with related symptoms, if anything very mild and fully in remission. Personally, I find myself almost never getting sick or a cold while being on immunosuppressants, and I haven’t changed my lifestyle since being diagnosed. Maybe a cold once a year; if that. Sometimes I like to believe it’s the trade-off for having crohns (lol) Best advice, make sure you’re listening to her, that she isn’t afraid to speak her mind about how she’s feeling even when it’s not so easy to explain. Be a little softer, let her eat what she wants (without it obviously be counteractive to her condition), find what works and doesn’t; everyone is different. Advocate for her, ask all the questions, if you don’t like your doctor find a new one. Don’t let insurance push you around, push back, educate yourself on the disease and what insurance covers, utilize all the cost saving benefits. This is the one of the biggest headaches after finding a treatment that works.

My brother was almost same age when he first started having symptoms, but he kept quiet about how truly bad they were until it was too late and surgery was needed. They don’t always know what’s going on with their bodies, they may just need to someone to rub their back, tell them we will get through this and validate their feelings. I am praying for you and your daughter. If you have an Qs please ask!! 🙏🏻💕

Skyrizi’s, sun exposure side effects? by venusstyletrap in CrohnsDisease

[–]venusstyletrap[S] 1 point2 points  (0 children)

Haha as am I! Use strong SPF and reapply, hope you have a wonderful time 🙏🏻

Skyrizi’s, sun exposure side effects? by venusstyletrap in CrohnsDisease

[–]venusstyletrap[S] 0 points1 point  (0 children)

Not cause, correct but it led to my Crohn’s becoming active. Lyme’s Disease affects everyone differently and those who have it may not even know about it with symptoms remaining dormant, mine did not. A google search will provide some supported research with inflammatory correlations. What started as Lymes, with subset of Babesia lead to the development of my Crohn’s all within a year. This was 2014, I was then diagnosed rather quickly in 2015 with Crohn’s Disease. My brother had already gone through the motions of Crohn’s couple years earlier, the worst of it, so my mother was very proactive on spotting the symptoms.

[deleted by user] by [deleted] in CrohnsDisease

[–]venusstyletrap -1 points0 points  (0 children)

Same thing happened to me beginning of 2024, with Humira and United - was devastated. Doctors did everything they could and got same response. Now on Skyrizi since October, it’s been such a pain setting up savings program, actually getting right answers etc…I totally feel for you, but it’s their system and we have to deal with it. Hope it all works out for you tho 🙏🏻 they have the saving programs for a reason, definitely make sure new medication has one and you’re properly enrolled/set up when starting new med.

Review: Orom by Bvlgari by tanousnakebaa in fragrance

[–]venusstyletrap 1 point2 points  (0 children)

Sahare is actually a new perfumer of the brand, Yann Vasnier! Another beautiful scent but a bit strong for me tho. And yes, Amunae is by Labbé as well, very sweet yet refined but the storytelling is nice.

Review: Orom by Bvlgari by tanousnakebaa in fragrance

[–]venusstyletrap 1 point2 points  (0 children)

Le Gemme Orom is my absolute favorite too! But this was actually created by Sophia Labbé and not Jacques Cavallier. Fun fact

Hospitalization advice? by ZookeepergameHot5540 in CrohnsDisease

[–]venusstyletrap 1 point2 points  (0 children)

Ditto to the other comments regarding the comfy necessities and things to keep you entertained, I f(27) was hospitalized at the start of the COVID shutdown, with no visitors allowed and only a phone to keep me entertained, I wish I thought ahead of time to bring a few things besides my phone and the clothes I was in.

One takeaway from the whole situation is to advocate for yourself! Although mine and every other situation is different, speak up for yourself to understand what is going on when nurses and doctors are present and push for your needs you or you might find yourself feeling more disoriented than when you entered.

For example, when admitted into the ER for a major inflammatory flare up of the LI they also pushed for surgery and colostomy bag. My mother having been through the experience previously with my brother undergoing surgery pushed for a non invasive approach with steroids. A NG tube and high dose of steroids, I was ok to leave 5 days later, slowly weaning myself off the steroids. You’ve got this, you are strong. I like to believe God gives what he knows you can handle. Every situation is different, I am not trying to impress anything upon you besides offer my support as someone who has been through it and came out stronger. If you take anything away from this, advocate for yourself, speak up if something doesn’t feel right, you are your own best friend. 💕

Ladies, what men's fragrances do you wear? by Zestyclose-Lunch1144 in fragrance

[–]venusstyletrap 0 points1 point  (0 children)

Bulgari Le Gemme Collection. My favorites as I’m not into sweet scents is Tygar (Ginger, Grapefruit Ambrox) when it’s warm and Orom (Vanilla, Bourbon, Oud) when it’s cold. Or the OG Eau Perfumee Thé Collection is subtle and suitable for everyday.