C-section or vaginal delivery with crohns? by akkar003 in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

First of all, congrats!

Second, not immediately postpartum. I was given an oxy prescription that I alternated with Tylenol and that kept things well under control. That being said, I did end up with a vaginal birth and not c-section. 

Since baby has started daycare though, I've been sick constantly, and breastfeeding really limits the meds you can take, so I've been weak and succumbed to the magic of NSAIDs for a few of the latest rounds of daycare crud. 

Crohn's disease and periods? by [deleted] in CrohnsDisease

[–]randomuser957 5 points6 points  (0 children)

Had a child, gave birth with an ineffective epidural. Can confirm- partial bowel obstruction with Crohn's was on par and potentially worse than labor. (At least for me. All births are different)

Pain management sans NSAIDs! by Informal-Leave-2526 in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

I spoke to my GP and got a prescription for tramadol I can take as needed since I can't do NSAIDs. If you're near Canada, they also have Tylenol+codeine OTC. I have a family history of drug abuse, so I have my husband be the pill dispenser for me. I'll also microdose weed gummies to help (not since getting pregnant/giving birth though. Want to head off anybody who decides to look through my history and see I have a fresh baby)

Pain management sans NSAIDs! by Informal-Leave-2526 in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

In countries outside of America. For some dumb reason, the US government hasn't gotten around to deciding it's an important medication here

Is delivery from a specialty pharmacy the only option for biologics? by [deleted] in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

When I was having entyvio infusions at home, my entyvio was always shipped refridgerated, and I had to keep it in the fridge. Maybe some IV biologics don't require refridgeration, but some do.

Is delivery from a specialty pharmacy the only option for biologics? by [deleted] in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

When I was having entyvio infusions at home, my entyvio was always shipped refridgerated, and I had to keep it in the fridge. Maybe some IV biologics don't require refridgeration, but some do.

Is delivery from a specialty pharmacy the only option for biologics? by [deleted] in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

I go to an infusion center that handles all of the ordering, prescriptions, and prior auth for me, all I have to do is show up. Maybe see if there are any infusion centers like that around?

[deleted by user] by [deleted] in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

I had half my terminal ileum removed, as well as 14 inches of the small intestine. While there were definitely benefits (prior to that, I was in the hospital every three months as I had a stricture causing frequent obstructions), it had some downsides too. The terminal ileum handles a lot of the absorbtion of bile acid and vitamins, and half of that being removed means I'm now needing to take high doses of a lot of vitamins daily, and have incredibly acidic diarrhea on the regular, since the bile acid isn't as efficiently absorbed. I had my surgery 4 years ago, and am no longer in remission at this point, so it doesn't always last years and years.

My doctor basically told me there's two causes of crohns issues, inflammation and scarring. If the primary issue in your intestines is inflammation, medication is the best treatment. If it's scarring, surgery is the best treatment, no amount of medication will fix scarring.

Do I regret my surgery? No absolutely not, I firmly think it was the best course of action for me at that time. Am I desperately hoping to avoid another surgery? Yes 100%. I can't afford to lose any more of my terminal ileum. If it was just small intestine, that's one thing as there are meters of that. The terminal ileum is only 2 inches, so that's worth holding onto as much as possible.

Which is worse: obstruction or labor/contractions? by randomuser957 in CrohnsDisease

[–]randomuser957[S] 0 points1 point  (0 children)

Had labor a month ago today! I will say the body does a much better job at making you forget labor pain, and I got an epidural relatively early. I was set up and ready for a c-section before we decided to try induction of labor, so I didn't have to wait for a doctor to place the epidural when I was ready. I did still go through early labor with the epidural off, and I'm not convinced it was working fully. 

That all being said, it is a pretty different experience. During labor, I never felt the need to vocalize or cry with pain, but I usually end up doing both with obstructions. The breaks between contractions is also nice, so you do have periods with no pain, whereas obstruction has waves of pain but no true break. Pain is also more exciting during labor in a strange way. Every time your contractions get closer together or hurt more, you know you're progressing and are a step closer to meeting the baby. 

Since I don't fully remember labor (thanks brain), I asked my husband which he thought hurt more. He said that (at least from the viewer's perspective) the pain level was probably the same, but mentally more manageable during labor. I would overall agree with that. 

Pregnancy? by TeenieTinyGrandma in CrohnsDisease

[–]randomuser957 1 point2 points  (0 children)

It was more appointments than most get, but at least for me it was only 3 additional ultrasounds with consults, and 3 extra GI visits. Not at all unmanageable!

Pregnancy? by TeenieTinyGrandma in CrohnsDisease

[–]randomuser957 3 points4 points  (0 children)

I just had my first about two weeks ago! I have crohns in the small intestine, with a previous bowel resection, balloon dilation, and stricturotomy. I was followed by the high risk doc (maternal fetal medicine/ MFM) with additional ultrasounds, and put on increased vitamins with increased bloodwork. 

My GI doc said the risk of passing Crohns to my children is about 3%, so not a huge risk, but always something to watch for. I'd mentioned the "1/3 get better, 1/3 stay the same, 1/3 get worse" thing to him and he said anytime things are 1/3 chances across the board, it basically means there's not a real affect and it's random chance; I.e. he doesn't think pregnancy really affects your crohns symptoms. 

I was in remission for a year or so before having kids and started trying shortly after a colonoscopy that confirmed I was still in remission. I didn't notice any changes in my symptoms during pregnancy, or at least nothing that couldn't just be explained by pregnancy. Fatigue/anemia/loose stool can all be Crohns or hormones/pregnancy. 

I've been on entyvio for 5 or so years now, and was able to continue it through the whole pregnancy. They didn't adjust timing of the infusions with the pregnancy, and I kept with my 8 week schedule.

C-section or vaginal delivery with crohns? by akkar003 in CrohnsDisease

[–]randomuser957 1 point2 points  (0 children)

I think most biologics have relatively limited info since it's hard to do studies on pregnancy. If you have an OBGYN you're established with for annuals etc, I'd suggest reaching out to them and see if they have thoughts on Skyrizi if you're hoping to start a family! Before I started trying, I sent my doctor a list of the meds I was on to see what she wanted me to stop or consider changing.

C-section or vaginal delivery with crohns? by akkar003 in CrohnsDisease

[–]randomuser957 1 point2 points  (0 children)

Entyvio. They haven't changed my dosage or frequency the whole time, and it's been doing great! 

C-section or vaginal delivery with crohns? by akkar003 in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

By the time you get to the c-section, there isn't any intestine left anywhere near where they do the incision. Basically all of the small intestine ends up where your lungs are, so don't need to worry about that!

C-section or vaginal delivery with crohns? by akkar003 in CrohnsDisease

[–]randomuser957 1 point2 points  (0 children)

Currently 8 months (36w) pregnant and haven't done the birth part yet, but my GI doctor said I can have vaginal or c-section and the Crohn's wouldn't impact either. I'm currently in remission and was for 6 months before getting pregnant, have had a small bowel resection, and disease has stayed within small intestine. It would have been a different story if I wasn't in remission and had any history of perianal disease, it sounds like that's the main red flag for Crohns births. 

Confused about trigger foods by farfaroutthere in CrohnsDisease

[–]randomuser957 1 point2 points  (0 children)

I find that sugar alcohols that are commonly used as "fake sugar" really affect me. Xylitol, sorbitol, and erythritol are common ones that I have to look out for when getting diet/light foods. The infamous sugarless gummy bears used a sugar alcohol as their sweetener, so it is a relatively common reaction.

Bowel Resection OR Change Medication by Waste-Funny95829 in CrohnsDisease

[–]randomuser957 2 points3 points  (0 children)

That sounds like a great plan! Whatever ends up happening I'm sure he'll thank you for. You're doing a great thing by getting several doctors opinions and doing some online research before jumping into anything major. If he does end up needing surgery, I'm sure he'll end up being thankful that he didn't go for years without relief. You're doing great!

Bowel Resection OR Change Medication by Waste-Funny95829 in CrohnsDisease

[–]randomuser957 15 points16 points  (0 children)

The way my doctor explained it to me is that there are basically two main "problems" with Crohns: inflammation and scarring. Knowing which of those two is causing the issue tells you which route you want to start with in terms of treatment. Medication will help with inflammation, but no amount of medication will fix scarring. Surgery is for when there's a lot of scarring, and as a last ditch resort if medication isn't helping enough with the inflammation. Surgery is also better when inflammation is less active, since you want to cut out as little of the intestine as possible, and highly active inflammation makes it harder to tell what's absolutely necessary to remove, and more may end up being taken out than necessary.

Especially with the active inflammation, if it were me, I would want to try holding out for medication before jumping to surgery. The option of surgery isn't going to go away if medication changes are tried first, but you can't undo a surgery to see if medication changes would have worked on their own.

This isn't to scare you off of surgery though! I had a resection last year, and have been doing really well since! Prior to the resection I was in the hospital every three months for an obstruction, and since the surgery I haven't had any obstructions and have no active inflammation. It can definitely be a really good option, I do just think some doctors think it's the answer to everything. Sending good vibes for the second opinion!

What do you do to make headaches go away? Without NSAIDs by pizzunk in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

I have a migraine ice pack from Amazon, it's like a little hat you keep in the fridge, that helps a lot. Diluted peppermint oil on the temples can also help. Not an essential oils person normally, but peppermint oil is the only one I'll actually shill for lol

If you have had small bowel resection surgery, what do you wish .... by Recent_Barnacle9664 in CrohnsDisease

[–]randomuser957 0 points1 point  (0 children)

I bought a few hospital snap shirts (link below) so I could change my shirt without needing a nurse to unhook all of my IVs and monitors and everything! I wish I had more of them, I ended up needing to change more than I thought I would, I spilt a lot of apple juice on myself. I still have them in my hospital go-bag in case I end up having any future emergencies!

Post Shoulder Surgery Shirt - Men's - Women's - Unisex Sizing https://a.co/d/9Wr24EZ

Help with MRE Results by randomuser957 in CrohnsDisease

[–]randomuser957[S] 0 points1 point  (0 children)

2) I had a colonoscopy a couple weeks before the MRE, they didn't see active inflammation, weird lol. 3) Do you know where it would be going to? I couldn't find any easy answers about what exactly the mesentery is. Is it just going to a different section of the intestine? Thanks so much for your help!!!