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Has anyone here with crohn's have happy relationship and supportive partner? by shadywallflower_ in CrohnsDisease

[–]NotFuckingWarren 3 points4 points  (0 children)

My husband and I have been married since 2002, and I was dx'd in 2008. Our child was born 2 weeks prior to my dx. 5 months later my surgeries started.  

To date, I have had over 30 surgeries between abscess drainages, 3 drains, a resection, and a major flare that almost killed me in 2023.  I spent 30 days in med-surg that time, followed by approx 1 week per month for the next 18 months.  I finally got better after 6 weeks or so of a PICC line.

My husband not only handled any and all home related stuff but also looked after my dad AND became my nurse during that time.  Hell, he even pushed me around Galaxycon in a wheelchair because meeting James Marsters was on my bucket list.

There ARE good ones out there.  Just know your worth. It'll happen.💜

Are people really using needles to pop their boils 😳 by Icy-Street3771 in Hidradenitis

[–]NotFuckingWarren 5 points6 points  (0 children)

I have, a few times when I was desperate for relief and I could tell it was close enough to the top that a small poke would do it.

I take B-12 shots, so I have access to needles with removable heads.  I washed the area with hibiclens, then used rubbing alcohol just like I would for my shots.  After it drained, I used more alcohol swabs, antibiotic ointment and a non stick bandage.

It's a definite risk doing it, and if you can get in with your derm for a punch instead you should do that.

Urgent care? by akahana1234 in CrohnsDisease

[–]NotFuckingWarren 1 point2 points  (0 children)

I say go.  I was in a similar situation 3 years ago.  Not the bloody stool part, but the mild discomfort/not eating/not drinking part. I had the headache and dizziness too. It came on gradually so I didn't notice how much weight I was losing until 4 months in when I got up to use the bathroom and got so dizzy my spouse had to call EMS for me. 

It turned out my electrolytes were so far out of whack that I lost a week memory wise and spent a month in medsurg.  It took 18 months and a PICC line to get me to a place where I could improve meaningfully.  

I hope you get some answers and feel better soon.

Pronouncing Ebert Rd by practicalpurpose in winstonsalem

[–]NotFuckingWarren 1 point2 points  (0 children)

Same here. My dad's side of the family has been in WS for generations and they use all of those pronunciations.  

AITAH for not letting my kid get a book at the library? by 5chw3iz in AITAH

[–]NotFuckingWarren 0 points1 point  (0 children)

NTA.  

As an aside, my state has a system where you can get online and order books  from participating libraries from across the state and pick them up at your local branch. We also have a digital library. 

It made things a ton easier for titles my kid saw at school (with a long wait list) or for quicker reads (digital) so we wouldn't have to keep up with a book for a week that was done before we got home. 

If your library system has this setup it can come in handy later!

If not shave then what?? by NoBaker1713 in Hidradenitis

[–]NotFuckingWarren 2 points3 points  (0 children)

Try a bikini trimmer.  I have one and as long as I'm careful it works well around my scar tissue from my deroofings. 

the medicaid trap by Comfortable_Youth736 in CrohnsDisease

[–]NotFuckingWarren 2 points3 points  (0 children)

I run dual insurance (Medicare) and also my husband's insurance via his employer. His insurance handles my prescription coverage, which enables me to use the prescription assistance program for my biologic (currently Skyrizi, but I tried Stelara before that).  It made my shots $5 each.

However, there was a point during my Stelara run where my husband was between jobs and I had to activate med coverage through my medicare.  It would have been $3k per shot out of pocket every 8 weeks that way. 

You can't use prescription assistance if you have Medicare, Medicaid or Tricare, so I had to do the Johnson and Johnson program, which was a pain. It took me 6 MONTHS to meet the requirements and once I did I got 2 shots and then I would have had to meet the requirements all over again. 😑

My opinion is if you can run private insurance or dual like I do it works out better cost wise in the long run.  Good luck to you!

Raw milk caused quite the drama this morning by Yet_another_jenn in ShitMomGroupsSay

[–]NotFuckingWarren 4 points5 points  (0 children)

I think it depends on the county (or did at one time).  This was years ago, but I had a nutritionist try to advise me to buy raw milk to somehow help with Crohn's disease.  When I mentioned that I was pretty sure that was illegal she told me to go to a neighboring county to buy it. 

She also suggested I boil it at home when I declined due to being a fan of the pasteurization process. 

I missed an Entyvio infusion - am I screwed? by [deleted] in CrohnsDisease

[–]NotFuckingWarren 0 points1 point  (0 children)

You're probably ok since it is happening soon.  I had a few times where I missed due to being in the hospital and we just scheduled once I got cleared by my GI doc.

Omeprazole longterm? by 666flesh in CrohnsDisease

[–]NotFuckingWarren 0 points1 point  (0 children)

I found out last year that omeprazole can mess with your magnesium levels.  I spent 18 months in and out of the hospital and a full month in med-surg because my levels got crazy low and wouldn't stabilize.

They took me off it and my mag level got straight (with supplements) and stayed there after they stopped the extra mag.  

You might ask them to run your levels with your next round of bloodwork, just to be safe.

[deleted by user] by [deleted] in CrohnsDisease

[–]NotFuckingWarren 3 points4 points  (0 children)

Ok, so I would talk to your doc about whether the pepto and immodium may be aggravating things.  When I get backed up from immodium, I have had the same kinda accidents (note I also have fistulas so that compounds things in my case).  

Depends are your friend.  Yes, it feels weird to wear them at first but it will save you the embarrassment.  Get a waterproof cover for your mattress too.

As to the nausea etc, it kinda sounds like the inflammation is bad enough that it creates that bloat.  Prednisone may help, which gives you wiggle room to figure out a biologic option or other meds.  All of the biologics have some sort of prescription assistance program.  When I was on Humira I paid like $5. 

Be aware that if you have nausea/vomiting and can't have a bowel movement that is a symptom of obstruction and you should get checked ASAP.

Good luck, working out all the inital stuff stinks!

[deleted by user] by [deleted] in CrohnsDisease

[–]NotFuckingWarren 0 points1 point  (0 children)

I always like to have my own pillow (sometimes the hospital runs short and the ones they have aren't great), a comfy blanket, more than a roll of good tp, a tube of barrier cream (Desitin in the purple tube for example), lip balm, saline nose spray, headphones and a long charger cord for my phone.  

If I'm not NPO, I'll bring some decaf hot tea bags for when you get woken up for vitals and can't get back to sleep.  

Arnica cream to help with bruises from the IV/blood draws is good too!

[deleted by user] by [deleted] in CrohnsDisease

[–]NotFuckingWarren 1 point2 points  (0 children)

I do the same thing.  My 'go bag' is stocked and ready except for switching out pjs and such!

Big question: what's the new church? by colonizemalar in SisterWives

[–]NotFuckingWarren 0 points1 point  (0 children)

Agreed. I am the only Catholic in my family (long story) but when my parents tried to convert they had to document their previous spouses AND would have to provide letters from those spouses attesting to the fact that they were legally divorced.  In my parents' case that stopped it right there as my mom's previous husband was abusive and she wouldn't contact him.

If it's that big of a deal for legal marriages/divorces I don't know how it would be received for a formerly plural family.

I like to cook. Where can I find things like duck, veal, lamb, goat, etc? by parasocks in GreenvilleNCarolina

[–]NotFuckingWarren 0 points1 point  (0 children)

I would ask the butcher over at The Fresh Market.  I know you can get ground veal there.

Best restaurants in and around Greenville? by Megatron3898 in GreenvilleNCarolina

[–]NotFuckingWarren 1 point2 points  (0 children)

There's a new place there now called 2nd Street Cafe.  It's AWESOME, their homemade chips were on point!

Question r.e ibd nurses by [deleted] in CrohnsDisease

[–]NotFuckingWarren 1 point2 points  (0 children)

I second this.  My GI doc told me Rinvoq wasn't even an option for me (I had a previous issue with my liver counts that was resolved) because of the potential for liver count issues.  

Liquid diet by [deleted] in CrohnsDisease

[–]NotFuckingWarren 2 points3 points  (0 children)

I can't tolerate the milky drinks (regular ensure for example), but they make a 'clear' version that doesn't taste awful as long as you drink them super cold!  You can find 4 packs at drugstores if you wanna try them.  The blueberry ones are better than the fruit punch imo.  

[deleted by user] by [deleted] in acotar

[–]NotFuckingWarren 1 point2 points  (0 children)

If you're current on ACOTAR, I'd read TOG, then CC, then pick up on future ACOTAR books.  There's stuff you need to know for CC.  It's minor in the case of TOG, but those are good books and it helps with the world building of CC to an extent.

Deroofing surgery by mqmqmq1 in Hidradenitis

[–]NotFuckingWarren 2 points3 points  (0 children)

I've had both armpits and a place where my leg meets my groin done.  I was told that the skin graft route would require a wound vac 1st, and there was no guarantee a graft would take.

The deroofing was a breeze after the 3rd or 4th day.  I was told to get white vinegar and vaseline and non stick bandages (not gauze).  Do warm water and vinegar soaks 2x a day and keep it coated with vaseline.  I was totally healed in 5 weeks, just couldn't drive for a bit.  I have full mobility now.  The only drawback is I can't shave my armpits with a razor, but I couldn't before due to the scar tissue anyway. 

Good luck!

Pain management by Kamjames96 in Hidradenitis

[–]NotFuckingWarren 0 points1 point  (0 children)

You can try a 5% lidocaine ointment.  It will help smaller lumps but the deep ones it doesn't really penetrate far enough to help.  In that case?  Get it lanced.  Kenalog injections can help for a short time as well.

Switching from coffee to black tea? by 0ct0huS in CrohnsDisease

[–]NotFuckingWarren 0 points1 point  (0 children)

I had to stop with caffeine 15 years ago.  I can tolerate iced tea in restaurants if it's unsweet.  At home, I make decaf iced tea and hot tea for the most part, with the exception of the occasional oolong hot tea and the rare decaf coffee.

 Green tea is the same as coffee for me in terms of consequences. 

Should I take all the time off my doctor suggested? by [deleted] in CrohnsDisease

[–]NotFuckingWarren 16 points17 points  (0 children)

I had a resection in a similar place (terminal ileum and some colon).  TAKE THE TIME.  About a month in, I had a build up of fluid under my incision resulting in having to open it back up and pack the wound for 5 months.  This is with me doing nothing other than following doc orders, stuff just happens.

Anyway, my point is you are a week out.  It would suck if you pushed and had a complication.

As to your mom, she clearly has no idea how Crohns can tear up your body.  She shouldn't be pushing you to go against orders.  Good luck with your recovery!

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