Crohn's vs UC

[Crohnzie Girl]

I'm so scared with my decision now. I have Crohns disease and jus over the weeknd I was hospitalized. The ER Dr there learned bout my upcoming surgery and tried to talk me out of it saying that bc I have Crohn's and not UC, that once they start cutting out my colon they are jus gonna keep cutting til there's nothing left bc Crohns is known to cont to grow.... Has anyone with Crohns been in remission after having a colostomy? Please need feedback!

 

[nogutsnoglory]

I have had colon resected and since then the rest hasn't needed resection. *Crossing fingers that stays the case*. Crohns can hit anywhere from mouth to anus, so your doctor is right that it can grow elsewhere and multiple surgeries and medical approaches will be needed.

That being said if you can't function now and your colon is so damaged it may just need to be removed. Are they saying its scar or inflammation? Inflammation can go away with medication but scar tissue can only be eliminated under the knife. You may find after that surgery that you are in remission and no longer need anything.

I don't have a colostomy but wanted to try to alleviate or help put your fear into perspective.

 

[DJW]

Hi. Surgery is a last resort for crohns patients because it can come back elsewhere. But as NGNG said, if damage is significant or not responsive to meds surgery is required. I had about 20 yrs remission with no meds.

 

[Crohnzie Girl]

My intestines are both scarred and inflammed. I'm only 33 and I thought that this surgery coming up for me is the best decision. Now, I guess I have other Drs I need to talk to. But these Drs don't kno me. They don't kno my history. Is what I don't understand. Get a 2nd or 3rd opinion from a complete stranger surgeon no surgeon still strangers to me! I wanted to hear from real people here on this forum who has Crohns how they are doing after surgery. Weeks, months, years later don't matter. I like to see how well they are dealing with Crohns after a colostomy surgery.

 

[nogutsnoglory]

If your colon is both scarred and inflamed, its possible medication can melt the inflammation enough for your colon to be functional without needing or delaying surgery. Like DJW said surgery is always the last resort but it may help alleviate so much pain and help you resume a normal life.

I'm not sure off hand whom on the forum has a colostomy but if I find one ill tag them in this post. I'm sure there are a few and hopefully they can pitch in.

 

[nogutsnoglory]

Tagging annawato and chrisjue. Saw through a search they list having a colostomy and are active users. If they don't respond here, maybe send a message?

 

[Crohnzie Girl]

Thanks NGNG! I really appreciate the help!

 

[nogutsnoglory]

My pleasure I'm sure there are countless others. Come out come out wherever you are! Colostomy chat time

 

[annawato]

i dont have a colostomy I have an ileostomy but I think the principles are the same. My first resection I had no problems for a few years, my first ileostomy I had no problems while I had it (for a year) but developed problems pretty soon after reversal. I'm now on to my second ileostomy and so far things are going well except I have developed bottom problems which I have never had before and obviously I'm not using it at the moment so thats a bit odd. However I am not on any crohn's meds as none have worked for me or I've had bad side effects.
Stomas are not something GI's recommend unless they are absolutely necessary. After a resection they are used to allow the resected part to heal if they don't think it will when there is faeces travelling thru.
By all means get a second opinion if you want but it sounds like from your earlier posts that the operation is necessary. Whether the crohn's returns or not also depends on what part of your intestine is affected by it. If you usually only have it in the large colon then the colonostomy should help. Obviously there are no guarantees (ie me with my bottom) but there is less chance of disease than before.
If you usually get crohn's in the small intestine then the colonostomy may not prevent the crohn's from returning but it will allow the resected part to rest and heal.
I can't remember is your is going to be temporary or permanent? And if temporary for how long?
:heart: anna

 

[ChrisJue]

Hi Crohnzie Girl I started with Crohns way back in 1976 very bad pains weight loss went from 10st 10lbs to 6st 7lbs. Was Diagnosed Feb 1977 had my first op June 1977 and Colostomy formed told it was Temporary but still have it never had reversal anyway was in remission for 16yrs after that had some more bowel removed again in remission for about 6yrs to Oct 1998 pain came back and a prolapse in 2001 stoma wall became weak so stoma was re-sited 2" towards belly button and tried Infliximab, Methotrexate, Budesonide and now on Humira (Adalimumab) self adminitered Injection Pen fortnightly. which was working for about 3 years and now I'm in a flare up and increased Humira to weekly started 2 weeks ago so waiting to see if it works. If surgery is the last resort then don't worry about it the Dr. that said once you have surgery it never stops I had 16yrs of remission and 3 ops in 36 yrs isn't that bad there's new treatments coming out all the time and who knows a cure may be out there here's hoping! Good Luck with whatever you decide.

 

[Crohnzie Girl]

I'm back in the hosp but this time I'm in the hosp both my surgeon and my GI doc work in. They came to visit me and pushed aside all fears the other Dr had put in my head and now ill have the surgery on thurs. So in two days ill meet my new friend and hopefully free from this misery at least for sometime.

 

[annawato]

All the best crohnzie girl. You'll be a fully fledged member of the stoma club. Let us know how it all goes. We'll be thinking of you on Thursday.
:heart: anna

 

[Jimena]

I was so happy when i got my stoma, i am now 7 weeks post op and loving my new friend. I got little complications (PPG - Peristomal Pyoderma Gangrenosum) but stoma works great and i love that i don't have to go to toilet "normally". No pain!

Good luck and let us know how it goes! :kiss: