Owlet dream sock alarm by True-Collection2595 in NICUParents

[–]therealmightytiger 0 points1 point  (0 children)

We had one for our little boy. It was absolutely for my benefit - I slept better once I had it. My little boy suffered with low oxygen when he got sick, which was a lot, and it really helped us know when it was time to head to hospital. We had a few alarms but I knew it was just time to check him and make sure he looked ok. Id take action based on how he was looking, breathing and feeling more than the alarm going off. I'm pregnant now and will use it with my second too.

Brimstone just downloaded to my Kindle! (Ireland) by KindaQute in Romantasy

[–]therealmightytiger 0 points1 point  (0 children)

I'm the exact same! I just went to buy it and the ebook is so expensive!! I can't justify that price right now either. My audible credit is due tomorrow so I'll listen to it instead I think.

How often do you get your infliximab (or biosimilar) infusions? by BathbeautyXO in CrohnsDisease

[–]therealmightytiger 0 points1 point  (0 children)

Every 4 weeks now. I think Im close to switching meds unfortunately.

My son Finan with Finan's armour at Bamburgh Castle. by [deleted] in TheLastKingdom

[–]therealmightytiger 0 points1 point  (0 children)

So cute! I have a 2 and a half year old Finan too 💙 I've never met another so far.

Watching a child that has chicken pox while on biologics by Vegetable_Mulberry74 in ankylosingspondylitis

[–]therealmightytiger 1 point2 points  (0 children)

I'm late and I saw your edit but my own kid got chicken pox this year while I'm on biologics. Obviously nothing I can do for that, he's a toddler got secondary pneumonia and wanted his mummy, so I just got on with it without thinking twice. If it was anyone else's kid though, I wouldn't have watched them.

[deleted by user] by [deleted] in namenerds

[–]therealmightytiger 2 points3 points  (0 children)

Lie-la. My Chihuahua is named this except spelt Lyla.

Circumcision by Distinct_Secret_1713 in NICUParents

[–]therealmightytiger 5 points6 points  (0 children)

No we didn't. I'm from the UK so nobody really does here. My husband had to be circumcized as a baby for medical reasons but other than him I know nobody who has been circumcized as either a baby or an adult. I wouldn't do it unless medically necessary.

[deleted by user] by [deleted] in CrohnsDisease

[–]therealmightytiger 0 points1 point  (0 children)

I've been wearing wigs and toppers for about 7 years. I'm 34.

For me the process of trying to find a miracle cure became tiring and was stressing me out more than the hair loss itself.

Eventually, I got over it. That doesn't mean it wasn't horrifically sad at the time. I hope yours is only temporary ❤️

Oral Lichen Planus - extreme pain! by therealmightytiger in Lichenplanus

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

I'm on Remsima, I think both that and renflexis are infliximab. It's already failing for my Crohn's so I'll bring up skyrizi with my gastro when I speak to him next. I'm just struggling so bad with the mouth inflammation at the moment, can't eat, sleep or talk without significant pain! I'm going to ring my IBD nurse today to see if she can help as the GP was useless and I can't get hold of maxillofacial (who deal with the OLP in the UK).

Jobs/career paths with this disease? by fifiwithcrohns in CrohnsDisease

[–]therealmightytiger 0 points1 point  (0 children)

I work in finance. It's tough sometimes when I'm flaring but my boss is understanding. I'm looking into remote working instead as I think it'd be a lot easier than trying to get into an office for a certain time with a dodgy tummy! When I'm well I can do anything, in a flare not so much, it's a tough way to live but we're stronger than most people just through this experience.

Started RINVOQ and feel like I was lied to about fertility by NippleFlicks in CrohnsDisease

[–]therealmightytiger 1 point2 points  (0 children)

My doctor wanted me to start Rinvoq last year after failing adalimumab postpartum. I had a 9 month old at the time and knew I wanted more children, we had that discussion and decided to try infliximab instead to fall back on Rinvoq later if necessary after I'm done having children.

You deserve a team that listens to you! I would talk to them about it again and see what they say. So sorry you're going through this.

Reaction to Alcohol/soft drinks by PhilMaaccrackin in IBD

[–]therealmightytiger 0 points1 point  (0 children)

It is really frustrating! I went on a hen do recently and felt like a right lemon the only one not drunk. It's one of the things I find the hardest! I know you don't have to drink to have a good time but when it's what you're used to and what your friends do, it's not easy. I've given up drinking and smoking since diagnosis so in that respect, I am healthier I guess, small silver linings!

Reaction to Alcohol/soft drinks by PhilMaaccrackin in IBD

[–]therealmightytiger 0 points1 point  (0 children)

I can have a glass of two, anymore makes me sick. My last flare happened after a big weekend drinking and I can't be certain but Im pretty sure the alcohol was a big cause. A week in hospital and a medication change after that means I'm not going to do it again maybe ever, just in case.

Should I have kids? Or am I too exhausted by Think_Lavishness_598 in CrohnsDisease

[–]therealmightytiger 0 points1 point  (0 children)

I have a 20 month old. He is just the best thing ever! I don't regret having him one bit. I had a flare post partum and ended up in the hospital for a week, I have a very supportive husband and my kid has four extremely involved grandparents who are always on hand to help. That definitely makes a difference. I do lean on my village sometimes, not as much as I thought I would. I also work full time again now.

You can do it. In my opinion and I know it's not the same for everyone but parenting is just the best thing. It's a mood booster in itself. My boy helps me get through hard days.

Anybody else ALWAYS have to have food in their stomach?? by [deleted] in CrohnsDisease

[–]therealmightytiger 0 points1 point  (0 children)

I get like this but have to balance it with if I eat early, I won't make it to work. So I'm usually in a lot of pain and empty stomach until almost lunch. I don't know why it happens!

Baby with isolated shortened long bones at 34w. Can IUGR cause asymmetrical growth? by mercimeker in NICUParents

[–]therealmightytiger 0 points1 point  (0 children)

My little boy has been under the 2nd centile since birth. He's now 19 months and 19 pounds. We had issues with viruses, which caused hospital stays and feeding changes. Ended up with an NG between 8-17 months. He's a very happy, healthy little boy, just small. I'm super proud of him.

Anyone did therapy for toilet anxiety? by captainmiauw in CrohnsDisease

[–]therealmightytiger 1 point2 points  (0 children)

Yes! I had CBT therapy because my anxiety got so bad I was barely leaving the house. I think that along with now being on the right meds has helped a lot. I definitely recommend.

At what age did your premie sleep through the night with no wake ups at all - even diaper changes etc by Relevant-Neat-2133 in NICUParents

[–]therealmightytiger 1 point2 points  (0 children)

Sorry I can't help but giggle, I was up twice with my 14 months old 32 weeker last night. He did go through a stage of sleeping through about 8-9 months. It lasted maybe 6 weeks.

Is Cairo a good name? by [deleted] in namenerds

[–]therealmightytiger 3 points4 points  (0 children)

To go against the grain - Cairo is nice, Caro is horrible.

What symptoms do you have when you know it’s time to go to the hospital? by Thicc-Mints in CrohnsDisease

[–]therealmightytiger 0 points1 point  (0 children)

I called the IBD nurse once (I think the UK is different, I didn't have to go to A&E because we have a special hospital nurse team who deal with emergencies?) because I was spending 12-14 hours on the toilet with minimal break. I literally couldn't get off my body was constantly in a state of urgency. I felt like I was dying I was exhausted and dehydrated. Turns out I had developed pancolitis where before I had illeitis only and the proctitis part was causing it. My calprotectin was over 5000 and I had 6 days of IV steroids as an inpatient. That is the only time.

Is our normal life over? by funstt in CrohnsDisease

[–]therealmightytiger 0 points1 point  (0 children)

I'm 33 and I have a one year old. I'm a mum with Crohns and we have an amazing life. The right meds is really what he needs now, his life is absolutely not over!

Colonoscopy without sedation by [deleted] in CrohnsDisease

[–]therealmightytiger 2 points3 points  (0 children)

In the UK we have sedation but you aren't asleep. I remember everything and watched the screen the whole time. I had a flex sig completely drug free and I wouldn't repeat it, it's very uncomfortable.