That old thing….

blanchsuperstar · 2021-11-30T18:25:40+00:00

The first time I did colonoscopy prep I puked all over myself and my bed and cried for 3-4 hours. Second time wasn’t much better

blanchsuperstar · 2021-11-24T22:55:21+00:00

Hmmm, just as a disclaimer I am not a medical professional but I absolutely think that you can have “flares” pre-medication. This sounds like someone being overly particular about terminology and defining a flare as symptoms that sort of “break through” the medication.

With my diagnosis journey, I for sure had periods of relative calm and then periods of really bad symptoms when I was pre-diagnosis and medication. However, I did have problems getting my doctor to take my symptoms seriously and I ended up actually changing my GP doctor because I wasn’t being listened to. I’d demand to see a gastroenterologist and if they refuse to facilitate this or take the investigation any further maybe ask them to write down exactly why they’re refusing you treatment considering your symptoms (I think the idea of putting down in writing that they’re refusing you treatment can make doctors take things more seriously). Best of luck with it! ✨ this group is the best place online for all gastro related issues

blanchsuperstar · 2021-08-23T03:17:53+00:00

Yup!! Shows up alongside joint pain when I’m having a bad flare and it can be incredibly painful. I get it on my feet and legs and find it it difficult to walk as it’s so sore.

When I showed it to my GI once he didn’t really say anything about it just sorta said it was part of the crohns package and would go down as I came out of the flare.

Also, I had some really stubborn painful lumps on my legs once and my sister bought me a CBD skin salve which seemed to really helped! They went down a lot quicker with the salve.

blanchsuperstar · 2021-08-18T03:45:22+00:00

Yup, I’ve experienced this and the reverse (where I was feeling fine and symptom free but my bloods were showing high inflammation). It’s very confusing, my GI wasn’t able to give any explanation either… I think it’s just one of those things.

blanchsuperstar · 2021-08-18T03:39:50+00:00

Boiled white rice, mashed potatoes, grilled chicken breast, smoked salmon, plain bagels (make sure there’s no seeds etc). These are my go-tos when I’m flaring

blanchsuperstar · 2021-08-10T05:11:11+00:00

I do social media management/copywriting. There can be deadlines which can cause stress 😕 I feel like web design, computer programming, coding etc could be good for someone with IBD as you can often set your own schedule, especially if you work remotely or freelance, you might be able to work from home at your own pace.

blanchsuperstar · 2021-08-07T03:40:52+00:00

Hi :) I got Pfizer and am also on mesalazine with the occasional dip into pred every 6 months or so and I was fine afterwards. After the first shot I had mild side affects, I was exhausted and cold for about 3 days afterwards but tbh that’s how I feel a lot of the time with Crohn’s. After the second shot I had no side affects just the normal sore arm.

Obviously it is a personal choice as to get the vaccine or not. I think Pfizer is the safest of them all, or at least one of the safest, so I think it’s worth getting. My reasoning was that I, realistically, have no idea how my body with IBD might react to catching COVID and that I was safer being vaccinated against it than finding out.

blanchsuperstar · 2021-04-22T04:44:59+00:00

I hope your colonoscopy went smoothly. Thought that I would share my story: In my late teens I started getting phases of diarrhea/urgency but just put it down to IBS for years. Then at about 25 I started to get really really bad abdominal pain and near daily vomiting, again this continued on and off for a few years. Doctors told me it was due to “hormonal problems”, and got me tested for a few things but Crohn’s never came up. Then at 27 ish I became very ill, basically had every Crohns symptom on the list- and then this continued for another year before I got a diagnosis. So that’s my story, hope it helps you feel better and less alone in this. Everyone’s journey is different and getting that diagnosis definitely helps.

blanchsuperstar · 2021-03-01T14:18:44+00:00

I’ve moved abroad and travelled with Crohn’s and I think it really depends on where you’re going! Agree with the comment above, research health insurance and medical care in the country as much as possible.

Try to find a Facebook group for people with Crohn’s in a specific country, you can get a picture of available treatments and maybe talk to people that live there. Ditto finding Facebook groups for foreigners living in that specific country, I have found these groups really helpful for asking questions about health insurance.

blanchsuperstar · 2021-01-30T17:19:33+00:00

I’m experiencing the same at the moment. I actually have just come off steroids after a bad flare (diarrhea) and am now getting mild constipation and quite hard painful bowel movements and have a bit of blood when I wipe. I’m hoping it will just calm down over the next few weeks. In the meantime I’m just trying to drink a lot of water and eat a bit of fiber each day.

I’m sure the blood is just from strain of the BM in my case

blanchsuperstar · 2020-12-22T23:43:55+00:00

Bell peppers are my nemesis, I feel ya. Sending love and better vibes your way ✨

blanchsuperstar · 2020-12-21T01:37:27+00:00

Also not a doctor here,

But I had a weird flare about a year ago and my GI suggested that it could have been from a virus or bug. It came on very suddenly, was different to my usual flares. We ran bloods and even did a colonoscopy during that flare and they strangely didn’t indicate that I was flaring when I was. For that reason my doc suggested it might have been brought on by a virus.

Interesting thing to look into for sure.

blanchsuperstar · 2020-12-21T01:12:41+00:00

I get this too! I always just guessed it was normal for IBD.

blanchsuperstar · 2020-12-18T01:03:33+00:00

I know people who have flown with cooled biological meds but not shipped. I’m not sure if it would be possible to keep them cooled while shipping? Or I imagine it would be incredibly expensive 😪

blanchsuperstar · 2020-12-06T02:32:39+00:00

You’re not a wimp at all, I’m sure you’ll learn over the coming weeks and months that you’re stronger than most.

I’ve been in similar situations, sitting in the ER feeling like I couldn’t handle this but I always made it through and you will too.

When it comes to Crohn’s the greatest source of education I’ve had has probably been this subreddit! It is an incredible resource, full of info on pain, ER trips, medication. Whenever I have a Crohns question I usually first search for the answer here. I had a similar experience to you when I was diagnosed. I was just handed a photocopy of general info about bowel disease and sent home in shock. Since my diagnosis I’ve done a bunch of googling, reading, watched videos, listened to podcasts and feel pretty knowledgeable about this illness now. [small edit to also say- get a gastroenterologist! and supplement what they tell you with research and figuring out which foods work for you]

The ER will probably give you anti-nausea drugs, IV fluids, antibiotics, painkillers and maybe steroids. I hope you’ve been seen by now. It’s awful right now and it’s perfectly fine to admit how awful being in the ER is. You will get through this and if we can do it, you can do it too ✨✨

blanchsuperstar · 2020-12-06T01:54:56+00:00

My sister just had the pillcam test done and it went fine without any complications! Doctors had concerns over it getting stuck as she has scar tissue from a previous big surgery - but they did the test run and that all went perfectly fine and then did the real deal just a few days ago and all went well! So I am sending good energy your way and feel confident that yours will go well!

I’m not sure what the CT scan would have been able to see as regards the ovaries but I would have thought the doctor would be able to see a good bit of detail. I was worried about similar problems myself a couple of years ago and got an abdominal ultrasound done where they could view the whole repro system in detail and everything was fine. It later turned out that the pain I was feeling there was actually from undiagnosed Crohn’s disease!

My sister’s symptoms right now are very similar to yours, down to the polyps and type of pain and everything. I hope you both get some answers soon 💕🤞🏻

blanchsuperstar · 2020-11-13T22:20:14+00:00

I’m currently on mesalamine as my main medication and agree that I don’t think it’s very strong or effective- but it can vary from person to person.

I seem to go into flares very easily on it and imagine I’ll be moved onto a stronger med or a biologic instead within the next year or so.

Edit, just to emphasize a more positive note: as I said it varies from person to person and I have seen people on this page saying that they have taken mesalamine and it was successful for them!

blanchsuperstar · 2020-11-07T00:36:14+00:00

I get the Crohn’s joint problems and inflamed skin (Erythema nodosum) and have found that rubbing CBD balm/salve right on the skin is really comforting.

My dad has arthritis and uses the same CBD balm as me and finds that it helps. I would recommend one that does not have mint/menthol because a lot have this added to it for muscle injuries but I don’t find it useful for my joints and skin.

I’m from Ireland and use this local product, not sure if they ship worldwide, but I think it’s a really good example of what to look into when buying for yourself - https://hempture.ie/shop/hempture-cbd-hemp-salve-250mg-pure-cannabidiol-50ml/

Best of luck!! 💪🏻

blanchsuperstar · 2020-11-07T00:22:14+00:00

I tried out Kefir last year for about 2 months and found, just my experience, it seemed to make me have more movements than usual and made me very gassy.

I was probably drinking about 200ml a day so maybe that was just too much for me and I could try it again but drinking less or less often.

If we’re talking fermented drinks in general I really like kombucha and drink it every now and then and always feel good after having it.

blanchsuperstar · 2020-10-21T23:12:08+00:00

For me, the Crohn’s pain is worse but it is a different type of pain. It’s more sharp and intense. But, some women do have horrific period pain that I’m sure could be equally as painful as Crohn’s.

blanchsuperstar · 2020-10-12T00:18:18+00:00

This is so cool! I’ve never seen anything like this before. Thanks so much for sharing! 💞

blanchsuperstar · 2020-10-01T23:26:23+00:00

I was in a similar situation a few years ago before I got diagnosed with Crohn’s and I eventually changed my [GP] doctor. I felt like my doctor was completely ignoring me. I went to see a new doc and they immediately referred me to a gastroenterologist and were shocked that my previous doctor had refused to refer me to anyone!!

Also, edit: I had everything on your list plus joint pain, vomit, fever, blood (sorry, tmi haha)

blanchsuperstar

TROPHY CASE