What do you wish someone told you after diagnosis?

[vonfunk]

I guess everyone has things they learned after the fact, things that you wish someone told you at the very beginning.
I figure if we can get a repository of tips it might save time and help people in the long run.

For me:
I wish I was told that not only would I get hangovers on a regular basis, but those hangovers would be magnified to the nth degree, and far worse than anything I had previously.

And I wish someone told me NSAIDs were bad. After diagnosis hospital discharge, I was having wicked back pain and for a few weeks solid was popping ibuprofen like candy. No one thought to tell me until I mentioned it to my doctor during my follow up.

 

[Entchen]

Lighten up on the salads and fibre.

 

[katiesue1506]

The NSAID thing is a good thing.

I wish someone had told me to ask for the Miralax/Dulcolax prep for colonoscopies. My first experience wouldn't have been so horrendous.

I also wish someone had gifted me with a tube of Calmoseptine. I probably couldve saved myself from a bunch of fissures and pain.

 

[Rebecca85]

I wish someone had told me something, anything, about Crohn's disease! I was told 'we think you have Crohn's disease, we'll post you a leaflet' (which by the way never arrived).

 

[Welsh-bird]

Along with being told about NSAID's (which is still rather new news to me), I wish my Gastro had told me that the symptoms wouldn't be confined to my colon. Just being told that I may get joint ache, sore eyes and mouth and at times extreme fatigue, may welll have assured me that I wasn't going mad!
Think that us members could put together a best selling 'Everything you need to know about IBD' book- I'm sure in some cases, we know more than those treating us.

 

[Cookie]

I wish someone had told me that there's this wonderful site called crohnsforum.com where you can meet others with Crohn's and share your stories and get lots of great information!

Instead it took several years for me to discover it on my own:yfrown:

 

[tiloah]

Ha! I hear ya Cookie. I wish someone had told me about the forum too.

I wish somebody told me to CHILL OUT and that it was not the end of the world/my life. I already had anxiety at level 10, but the diagnosis and the Entocort turned it up to 11! I had my first (and only) panic attack shortly after. You hear about all the awful crap that can happen to you, but you're not able to process it. You find out later that while that stuff might happen, it won't happen all at once and you will be able to process it.

I wish somebody had told me I'm not alone in the extreme fatigue realm. My doc made it sound like the Humira would make it all better, but it definitely hasn't. Now they seem to think there's no reason for me to feel so tired.

 

[Astra]

Yeah, me too, struggled on alone without the forum, only found it when I Googled Prednisolone!

I wished the quacks had told me about Ibuprofen too!
They should've told me about how stress might kill me and that I'd end up in A&E with it!
In fact, I didn't get told anything about Crohn's!
Just, here's some Azathioprine, see ya laters!
It was only when I erupted in horrible itchy bleeding painful sores did I go back to them and kicked someone's arse! Then said -
Now sit down you knobheads and talk to me!!

 

[Terri]

This is what I wish...today when I went to see my GI, him and the regular doctor I see think that I may not have Crohn's after all..instead they think I may have ICV Syndrome (Ileo Caecal Valve) which can be corrected easily through homeopathy treatments. They gave me this oral mouth spray you take 4-6 times a day and took me off my meds to see what happens.

 

[Cat-a-Tonic]

I wish someone would just tell me what is wrong with me already. Being undiagnosed is the hardest part - even if they decided to tell me something useful, they really can't because they don't know for sure what I've got!

But, assuming this is some form of IBD (which my GI seems to think it is, and I agree, seeing as how I respond to Entocort & Pred) - I wish they would have given me some sort of tips as to what to eat (and what not to eat!), what to avoid (NSAIDs, stress), etc. I have been given zero advice of that sort - even just this week, when I had the flu or a virus, I called my GP's office and asked what to do. They told me to take ibuprofen! I asked if that was wise, given my probable IBD, and they said, "oh, right, take Tylenol instead then." Thank goodness for this forum and all of the knowledge I've gained here, or I would be totally lost (and probably a lot sicker because I'd still be eating high-fiber foods and popping ibuprofens!).

 

[Astra]

[QUOTE Thank goodness for this forum and all of the knowledge I've gained here, or I would be totally lost (and probably a lot sicker because I'd still be eating high-fiber foods and popping ibuprofens!).[/QUOTE]

Cat, I'd probably be dead by now!

 

[scifi-enthusiast]

I wish my previous GI had told me what the side effects of prednisone were and told me to take calcium with the pred.

Because I didn't take any calcium for the first 2½ years of taking pred I am experiencing horrible decalcification (calcium loss) of my teeth. Now my teeth have more holes in them than the golf course on Caddyshack, so it looks like I'll have to get implants or dentures put in.

 

[lifesover]

I wish my Docs would have said " sorry we made a mistake...you're fine":lol:

 

[Guest]

i wish there'd been more consideration back then for the emotional side of being presented with the life-changing gift that is Crohn's Disease..

seriously, there seemed to be no support system anywhere, not for me, my family - nothing. but worse than that, the doctors didn't even mention that side of things - like it wasn't a big deal compared to the medical and physical issues..

i also wish somebody would've told me about needing vitamin B12 injections, instead of letting me get weaker & more poorly, fast heading into pernicious anemia while my body was trying its best to heal.


but - i guess all the things we here have noted were amiss following our own diagnosis, have given us the tools to help newcomers to the disease and the forum, and pass on what we've learned...

 

[David]

I wish they would have told me more than leaving an answering message with, "Your biopsy came back positive we've scheduled you to see the doctor in three weeks".

LOL?

This thread has got me thinking though as I'm sure many of us wish we would have known a lot of what has been shared on this forum over time. So I started this thread: http://www.crohnsforum.com/showthread.php?p=251521

 

[usedup]

I wish my doc would have just said April fools day....you got the flu not CD

 

[sawdust]

If I could go back and give myself advice, it would be:

Take the time to gather and read as much info as you can and figure out how it translates to you, especially in regards to diet and meds. It seems like a disease that affects everyone a little differently, as do the meds, and foods. You will need to know yourself best of all, which will take time, so you can manage yourself, and in turn, your doctor.

Once I finally got diagnosed, I kind of let out a sigh of relief (one year of pain, the terrible tests, and finally, an answer!), I listened to the doctor, and started taking medication. At the doctor's suggestion, I did poke around for some info and strictly adhered to the diet suggested to me.

The info was terribly depressing to me, so I kind of stopped looking at that. No one could possibly understand and I didn't really want to talk about it, so I passed on the support group. And I was on meds, I certainly didn't need to know anything about further treatments.

Now, I'm taking a look at the info out there again to understand better how to help me and my doctor help me. This forum, and other support outlets I suppose, are full of people who understand you and can, at the very least, show an empathy from the same place, but can probably help you! And, the medications and surgeries, of course, I decided that I want to know as much as I can about them before faced with any decision where I'm desperate for results, over other things I may or may not want given more information.

I keep a food and "how I feel" journal. Nothing in-depth or hard to do. I write in it while I eat breakfast everyday and it just takes a minute or two.

 

[vonfunk]

I also wish that I had noticed the fact that the subject of this incorrect and missing words before I hit submit.

 

[Mountaingem]

The NSAID thing is a good thing.

I wish someone had told me to ask for the Miralax/Dulcolax prep for colonoscopies. My first experience wouldn't have been so horrendous.

I also wish someone had gifted me with a tube of Calmoseptine. I probably couldve saved myself from a bunch of fissures and pain.

We should give GI's the idea for a "welcome" basket for Crohn's patients-Calmoseptine, Tucks, prep recommendations, etc!

I wish someone would gave gifted me with Tucks, Calmoseptine, heating pad, and mostly a great big HUG!

 

[Silvermoon]

I also wish that I had noticed the fact that the subject of this incorrect and missing words before I hit submit.

LOL! I had to go back and re-read it cause I didn't notice anything missing until you mentioned it....

I wish that, instead of being told "Well we can put you on this particular medication for now, but we don't know what to do if/when it stops working" ..... that some one would have told me:

"Yeah, OK, it kinda sucks (OK it really sucks) that you have to deal with this, but you WILL live, and someday, sometime, even if it is only for a little while, you WILL get better."

Maybe then I wouldn't have abused my body so much thinking I wasn't going to live that long anyway, so I was going to really enjoy what little time I had (and yes, my hightest priorities for most of my young adult life were alcohol, cigarettes, fast food and coffee.... lol).

 

[tiloah]

That lettuce is not my friend! (It's on the list of things they said I should be able to tolerate).

 

[vonfunk]

and yes, my hightest priorities for most of my young adult life were alcohol, cigarettes, fast food and coffee.... lol.

Alcohol, cigarettes and coffee some of my priorities in my regular adult life.

 

[Guest]

I also wish that I had noticed the fact that the subject of this incorrect and missing words before I hit submit.

sorted

 

[Grumbly-Guts]

I wish someone had told me that CD and the meds that go with it can cause infertility. I also wish someone had sat down with me and talked "to me", explained things to me, offered my literature while I was in the hospital, and made sure I "knew" how to handle my "new" life before sending me home to deal with it. Furthermore, there should be a book given to everyone who has an ostomy for the first time. Because let me tell you when you know "nothing" about the latest addition to your tummy, it leads to some very embarassing and difficult situations!
and amen on the NSAIDS!!

 

[glum chump]

I wish they'd told me that 'Crohn's' was only half the battle...that joint pain, eye pain, night sweats, anemia, back pain etc. would be part of the "package deal."

I wish they'd told me about all the lovely things like fissures, fistulas, and abscesses.

I wish they'd told me about Sitz baths and Calmoseptine cream. And to invest in black underwear only. And a bigger bag to carry spare change of underwear and pants.

Oh, and I really wish they'd told me to never, ever, trust a fart. Under any circumstances.

 

[Nytefyre]

I wish someone told me
"Really, listen to me! You need to stop smoking (cigarettes) and drinking and taking rolls and doing...! Like Now! Unfortunately, your party just ended! Realize it, respect it, and move on!"

Yeah, that advice may have saved me a lot of pain throughout the years! Better late than never, though.

 

[vonfunk]

sorted

Thanks Dingbat.

 

[girlygirl]

i wish someone would have told me i would need my B12 levels checked.

That some medicine (pred) can make you cranky.

That food can cause reactions making your intestines swell

That not every doc seems to know all they should.. and you may end up with a handful of docs before long.. and you may have docs go back and forth on diagnosis..

 

[ibdoer]

How about "JUST KIDDING"!!!!!!

 

[Mountaingem]

LOL! I wish someone would have warned me about prednisone, for sure.

 

[Zoodles]

Woot didn't know about Miralax prep. Will check that out for the next round.

Wish somebody had showed me the relative risk of meds (humira in particular) to daily life activities. Once I saw that it was easy to make the jump. Understand the need for FDA black box warnings but knowing that it was a 6 in 10,000 risk made it easier to accept than a 66% chance of surgery.

 

[MADiMarc]

I wish that my doctor had not painted such rosy picture. I was so close to dying and made such rapid recovery (all in the unit thought I was a goner, they even started to prepare my husband) that they were just tickled I pulled through. I was given a miracle drug called Prednisone that allowed me to eat and to have my energy and young married life back. I just wish I had been given reality.

Okay just read glum chum's post. Ditto.

Michele

 

[Mountaingem]

I wish they'd told me that 'Crohn's' was only half the battle...that joint pain, eye pain, night sweats, anemia, back pain etc. would be part of the "package deal."

I wish they'd told me about all the lovely things like fissures, fistulas, and abscesses.

I wish they'd told me about Sitz baths and Calmoseptine cream. And to invest in black underwear only. And a bigger bag to carry spare change of underwear and pants.

Oh, and I really wish they'd told me to never, ever, trust a fart. Under any circumstances.

Amen! They painted a rosy picture for me, too, never saying it would be a full body experience.

I wish someone had told me Crohn's would increase my risk for an early hysterectomy 10 fold, to watch for fibroids.

I wish someone had told me not to push myself too hard or you pass out.

I wish someone had recommended a forum like this so I could educate myself and have a place to ask questions.

 

[maxibear]

my esteemed dr told me to join a group. learned everything here