Very new

[Toran74]

very new

Hi all i am new to forum and crohns

My story on 13.07.10 i was totally fine had een back and forth to docs with bad feet swollen and painful and had to give up dancing a few months previous which really affected me they thought it was arthiritis and i was awaiting for an appointment with consultant to confirm this, then i went to work on the above day and had terrible low abdominal pain sickeness and D i got sent home from work how i drove i dont know was slumped over wheel in pain well i spent the next 6 hours on bathroom floor in agony with my lovely 4 year old putting blanket over me i thought i had a bug a nasty one at that eventually at 2 am my husband realised i was sicker than that and called ambulance as i was screaming in pain, they thought it was kidney stones and took me n well after a long night and a lot of morphine which wasn't working i had tests galore and finally diagnosed with crohn's collitis they had me dow for emergency surgery even marked me up i had no clue what this meant had not even heard of it so was very scared, they decided to try meds first to see if i reacted and thankfully i did, So after 2 weeks in hospital they let me home but am going back in on fri for another colonoscopy and biopsy on bowel is this normal i had one in hospital but they said they didnt go far enough up???
I am really nervous and also scared what else they may find bearing in mind i have gone from healthy dancer to this and scared everytime i get a twinge.....

I have done lots of reading up but would welcome any advice i am on pred pentasa and cocodamol at moment and an anti sick drug i am due back to work next week yet still feel so tired all the time is this normal...

So sorry for the long boring post but wanted to introduce myself as i feel this forum is going to help me loads..

I am 36 byt the way

 

[Rebecca85]

Hello and welcome!

Sometimes if you are very inflamed they can't go very far on the colonoscopy either because it is too narrow, or because they don't want to risk causing more damage. So that is probably why they want to repeat it.

As for being tired, that is quite normal, it's like when you have the flu and your body puts all its resources into fighting the infection. Except with Crohn's your body is both causing and fighting the infection, so it's doing doubletime!

No doubt you have some diarrhoea, so it's very important to drink lots of fluids. If you have lots of d, you might want to get some Dioralyte or something similar to replace your electrolytes, and that might make you feel better.

See you around the forum!

 

[Crohn's 35]

Welcome the the forum :bigwave: Toran! So so sorry you had a rough time and I know that exact pain you are talking about. I too had the pains where morphine didnt even touch it. Sounds like narrowing because many times I have had a colonoscopy and out of 3 maybe one will get through. Sometimes it is from a spastic colon or inflammation. Either way hopefully they can get through to see if it is narrowing, which in (my own opinion only) experiences, narrowing is usually removed because most medicines can't reverse and if it is scar tissue, again that is another problem. Many people have Crohns for many years, and then the scar tissues builds or gets infected and causes blockage which is very hard to medicate.

I am on pred too, pentasa works great for Colitis and the other must be paracetamol, which means you must live in the Uk. Many people here from the Uk, great bunch to help where and when and who to get help from.

Glad you found us, hope you join us!

 

[Astra]

Hi Toran
and welcome

Yes Rebecca has given you good advice, it can be difficult to see if there's inflammation or narrowing. Fatigue is very common with Crohnies! The immune system initiates inflammation then sends out a response to fight it, then bam, you hit the deck!
I can really empathise with the scary feeling of 'will every twinge land me back in A&E?'
I've been on the bathroom floor screaming in agony then hospital for a week!
I believe that once the Pred has kicked in, the inflammation will reduce giving you some relief, don't be surprised tho if they don't see anything during scope if inflamm has subsided.
We're here for you now, lots of friends and support!
keep us updated and good luck with scope
lotsa luv
Joan xxx

 

[Toran74]

wow didnt expect such lovely responses so quick and thank you so muc that all makes total sense and its nice to have things explained from experience and in english not in medical terms lol

I am reacting well now to the pred and the pain is virtually gone its just learning what foods affect me etc but am getting there i will update on Friday after colonoscopy they said they are going to take a biopsy of the bowel too eeekk

Yes i am in the uk and cocodamol is a paracetamol and codeine based painkiller they help alot!!

Still learning what crohns is and collitis are they different things i was under impression collitis was part of crohns am i right??

Thanks again everyone i look forward to checking in daily not just for me but i have found reading others stories a help and there are so many worse off than me and need more support so appreciate the replies

Tor
xx

 

[Crohn's 35]

Colitis and Crohns are very much the same. Most people with colitis bleed, I do not, I have Crohns in the terminal Ileum and now waiting for a scope to confirm it hasnt spread to the left side... Good luck on your colonscopy, they are not scary at all. The worse it not being able to eat. Do you bleed? Do you have the prep yet as to how to clear yourself out? If you can get Pico Salax, (may not be in the uk) it is good stuff and less stuff to drink.

 

[Toran74]

No i never had a bleed at all it was just D and sickness and they said the collitis was very bad but it has calmed yes i have all the prep i have to start it tomorrow i have picolax and two other powder things that i have to take throughout day tomorrow ready for friday i then go to see my consultant next tuesday so i am sure i will find out more the exact place i am worse if that makes sense x

 

[Entchen]

Hi, Tor, and welcome to the forum. So so so about what you've gone through. I hope that you can get back to dancing (what kind?) once you get your symptoms sorted.

 

[Crohn's 35]

Usually who ever does the test tells you righ there, but that is here in Canada, not sure of your procedure. For now, I would stick to soft foods or Ensure if you can get it. Obstructions are usually from hard or chewy foods that get stuck. Glad you got Picosalax..lucky girl.!

 

[Toran74]

Thank Jettalady 00

Kelly i do Ceroc its a form of modern jive amx missing it but def determined to get back to it x

 

[Rebecca85]

I was under the impression that 'crohn's colitis' means Crohn's disease that is only affecting your colon. So Crohn's colitis and ulcerative colitis are two separate diseases.

 

[Toran74]

Thats what i thought rebecca although i am still learning x

 

[crazycanuck]

I dont know if this helps but some things maybe to avoid at the moment are seeds and skins. Just because seeds will often get stuck and irritate the bowel a lot and this includes popcorn and skins arent generally digestable, an example is corn in your BMs. So making your already sick and inflammed gut do more work can result in some bad times. This was one thing i was told when starting out and i think it helped. I am really sorry to hear how suddenly and quickly you were thrown into this and good luck with it all.

Sorry one thing to add i believe colitis just affets the colon and is mainly on the surface layers where as crohns will affect into the deeper layers of the gi tract and can be anywhere from mouth to anus.

 

[Toran74]

Thanks crazycanuck x

 

[Dexky]

Welcome Toran!! You've got some great info and advice already. I'll just say good luck and hope you stick with us!!

 

[gypsigirl28]

hi toran and welcome to the forum.

 

[DustyKat]

I was under the impression that 'crohn's colitis' means Crohn's disease that is only affecting your colon. So Crohn's colitis and ulcerative colitis are two separate diseases.

Hi Toran and :welcome:

You've found a great place for support and info and I see you've had plenty already, YAY!

- Colitis is a term used to describe inflammation of the bowel lining. So it can affect any part of the bowel.

- Crohns Colitis is Crohns that only affects the Large Bowel.

- Ulcerative Colitis is the other type of IBD and only affects the Large Bowel. Inflammation is usually confined to the mucosa (top layer of the bowel)

- Crohns disease can affect you anywhere along the gastrointestinal tract from mouth to anus and inflammation extends through the mucosa and muscle of the bowel.

I hope you stick around it would be great to see you around the forums.

Take care,
Dusty

 

[Entchen]

Ceroc looks great!!! (Just did a little Googling). Hope you can get back into it really soon. I'd never heard of Ceroc before tonight. I did ballroom through a university club for a number of years (10 dance plus salsa, Lindy, and a few others) and would like to try to attend a few socials again this year. Last year, dancing was out of the question, boo.

 

[Dexky]

Hi Toran and :welcome:

You've found a great place for support and info and I see you've had plenty already, YAY!

- Colitis is a term used to describe inflammation of the bowel lining. So it can affect any part of the bowel.

- Crohns Colitis is Crohns that only affects the Large Bowel.

- Ulcerative Colitis is the other type of IBD and only affects the Large Bowel. Inflammation is usually confined to the mucosa (top layer of the bowel)

- Crohns disease can affect you anywhere along the gastrointestinal tract from mouth to anus and inflammation extends through the mucosa and muscle of the bowel.

I hope you stick around it would be great to see you around the forums.

Take care,
Dusty

When in doubt, ask a NURSE!!!!!