"Relapse" just 6 weeks after my resection?

[NicoleKS]

I had 2 feet of small intestine/colon removed on February 3rd. And today for the first time since surgery, I feel awful. Just like I did before surgery. Stomach pains and constant growling noises. My GI said some people have a recurrence of Crohn's in the hospital immediately following the resection (and others stay in remission for years and years)! I really hope this isn't the case! Crossing my fingers and hoping it's gas pains or something.... Sigh... I'm calling my GI in the morning and asking for a Small Bowel Follow Through to see if there is any narrowing. Please keep me in your thoughts. Anyone been in my shoes??

-Nicole

 

[e13 boy]

Hi nicole

Following the resection i had 3 years ago the CD was on it's way back within one month.The op took me out of the horrific pain but i was back to 'moderate CD' instead of 'Severe CD'.

I was put on Azathioprine & then 6mp but both of those drugs made me more ill than the CD.

I then read about mucopollysaccharides which are extracted from Aloe,and i finally gained complete remission from CD.

hope you find what works for you ASAP

 

[hainman]

hi nicole i had 40cm of bowel removed and part of my colon and within a cpl of months i was back to the old ways.it was a nightmare as i was told i'd be fine for years but it wasnt to be.ive since been told i have an aggressive form of crohns.ive now been on methatrexate,azathioprine,imflixamab and humira now 6mp and still trying to get off the steriods,so i know and feel your pain pal,hope things work out for you.

 

[Neilfisk]

Hey everyone,

I'm glad it's just not me then!! I had 35cm removed last june and about 3 weeks after the op the crohns came back. Im now in so much pain and lots of blood etc. Its really frustrating as we all hoped it would solve the problem. What makes it even worse my local hospital wont touch me beacuse they told me there is nothing wrong with me, so I have to travel 200 miles to another hospital!!

 

[hainman]

neil thats a killer.i attend the gartnavel hosp in glasgow and have to say there pretty good at what they do,ive never realy had any pain after my op just constant D so had to stop working but been on pred near enough since then and got osteopenia through them,hope all goes well mate.

 

[Neilfisk]

Hey, aye it's a bloody nitemare mate. My local hospital is a joke. Glad your getting better treatment down by. I get the constant D all the time aswell, thats also very annoying!! I canna take Pred, made me a bit mad!! I was on 200mg for about 1 and 1/2, then thought "F" that so I stopped taking them. I have tried everyting else but nowt works, AZA,MTX, Inflix etc....

Cheers

Neil

 

[stevereds]

Sorry to hear this...my last resection which was abaout 6 yrs ago, my crohn's came back rather quickly, within a month, but it wasnt as severe as before surgery.
The surgeon said my intenstines were sticking together, plus I had an an abcess fistula, so I needed the surgery anyway. I did put weight back on etc, but lot's of times the crohn's comes back, it starts out smaller usually...and works its way up...
Hope all is well with you.

 

[hainman]

hey neil.aye im a bit like that too wae the pred.been on it on and off for bout 4years.ive been on aza,methx,imflixamab now on humira and 6mp and tapering down the pred 1mg a week too hopefully get of them,cant wait to get rid of the hamster face.seems my crohns is just in the back passage so they have me on asacol enemas and suppositorys .fingers crossed it works or im getting dragged back in for another op and prob a bag,
craig

 

[bkbigfish]

I had my surgery Feb 16th, 12 in of small bowel and little colon removed, plus abcess and fistula removed. I feel normal so far, but am rather scared cause it seems to come back to often to people who have IBD. I am sad you feel bad and hopefully its not coming back so soon. I have the stomach gurguling but no pain, and am on a full diet. I am back in the gym with light cardio, still off work for a few more weeks. i hope you are just having some minor issues! good luck! as we all need it! Billy.

 

[NicoleKS]

hi nicole i had 40cm of bowel removed and part of my colon and within a cpl of months i was back to the old ways.it was a nightmare as i was told i'd be fine for years but it wasnt to be.ive since been told i have an aggressive form of crohns.ive now been on methatrexate,azathioprine,imflixamab and humira now 6mp and still trying to get off the steriods,so i know and feel your pain pal,hope things work out for you.

Thanks for the reply. So you have only had one resection? Since your Crohn's is aggressive, how are you dealing with it and what are the doctors planning to do to help you? I have a feeling I'll end up with having it all removed and just get a bag.

 

[Crohn's Mom]

Ohhh this makes me nervous :/
My daughter has very agressive CD and is scheduled for her first surgery on Monday the 23rd.

Ahhh....I'm still just going to hang on to my hopes and dreams that this will be an awesome thing for her and will put her in to remission for 50 years or more with Crohn's never to be seen or heard from again...

Best of luck to you Nicole and I hope it's just a little gas like you say !

 

[hainman]

hi nicole.yes ive only had the one op so far but ive been up and down afterwards,had many a bad day with the dreaded D.been on all the meds that they can throw at you and kept on the dreaded steriods so ended up being dx with osteopenia 4mnths ago too,im on the last chance saloon and they think the next option is the total removal of bowel and the bag but if it gives me a decsent quality of life back then thats a good thing,i hope you get your situation sorted and can get a wee while yet before they decide to do another op.its just finding the right meds to keep you in remission,chin up pal xx

 

[ekay03]

Hi Nicole, I am very sorry you are sick again so soon after your resection. I hope you have some pain meds. The docs dont like to give them, but you shouldn't have to suffer so much!!!
I was one of the lucky ones. I had a resection in 2000. My Crohns was pretty aggressive, pain daily, and Im sure you know the rest. But since the resection I haven't had any serious problems. I still have occasional bouts of diarrhea and pain. I still consider myself lucky.
Hang in there Nicole

 

[MapleLeafGirl]

Hey Nicole - You just hit on my biggest fear right now. Let's hope that this is just a bump in the road for you and not the return of your Crohn's.

 

[Neilfisk]

hey neil.aye im a bit like that too wae the pred.been on it on and off for bout 4years.ive been on aza,methx,imflixamab now on humira and 6mp and tapering down the pred 1mg a week too hopefully get of them,cant wait to get rid of the hamster face.seems my crohns is just in the back passage so they have me on asacol enemas and suppositorys .fingers crossed it works or im getting dragged back in for another op and prob a bag,
craig

Hey craig, aye pred is a total no no for me. I went MAD on them, think I was on then to long plus the dosage was pretty high. Iv tried all the same drugs as you but none of them worked. How u getting on wi the ADA? The injection is dam sore like!! Well it was for me. Im guessing that area of crohns will be sore...? Mine is in the teo-iluem. I have had a rh hemi plus a resection last year. But, that hasnt seemed to work either!!
cheers, Neil

 

[hainman]

hey neil.so far so good on the ADA.i seem to be ok on the meds but then when i taper down to about 5mg of pred i flare up again and get taken of the med im on so fingers crossed that this stuff gets me of the preds,they do drive you nuts,i get very ratty and loose my cool aloy over nothing sometimes and the misses ends up falling out wae me but as you know yeh cant help it on these devil pills,im just hoping the humira and 6mp work and keep me out of hosp for another op.

 

[NicoleKS]

Here is the update--
I had the SBFT today and the doctor said he didn't see any narrowing and everything looked like it was going through okay (Yay!). However, he said there was "something" behind my colon that possibly came from surgery. Now I need to have a CT to find out what it could be.... Um, a scalpel? Glove? Gauze? Lol. Anyways, I will keep you all updated.