Crohns and Bowel Resection

[blunderkim]

Hi All,

Firstly, apologies if this is post/question is repeating what someone else has previously posted but I'm new to the forum...

I'm a 25 year old female who's been diagnosed for 8 years. Over the past year my crohns has significantly deteriorated to the point that in 2 weeks i'm getting a resection of my small bowel and unattach it from my large bowel. I understand that it's a standard proceedure.

i'm frantically taking the steriods prescribed to reduce my inflamation however, can really feel myself deteriorating again (i'm only 3 weeks out of hospital because of a flare up when they decided to do the surgery elective a month later to improve my chances of not requiring a stoma). Should i just tough it out until i go in for the op, or go back to my consultant? up. I know I may seem flippant or silly for asking advice here, however, i presume fellow crohns sufferers will identify with my problem. I'll just get admitted, get steriods iv, fluids then discharged for the surgury again in a fortnight. i'm trying to mimimise my time off work who are being relatively understanding but dont understand how badly i'm affected and dont want to spend any more time in hospital than i have to!

Any advice?

[coughting]

I was in the hospital for a week after my surgery because it was much more extensive than he thought it would be.  Did have it lapro but also needed blood.  I finally passed gas and they let me out.  It was 3-4 days after that when I had my first bm.  It was really painful but it was just that there was a lot that needed to come out.  It has been 2 years and I am doing great.   Best of luck

[blunderkim]

Hi there,

Just a quick note to let you know how i've got on. Had my surgery on Tuesday and thus far feel fantastic. Okay well not fantastic, I feel like I've been run over by a bus, but compared to how I thought I'd feel. Wow. Now I'm just playing the waiting game before I'm released, cant go anywhere until my bowels more. Can anyone tell me how long it took for them to get there bowel up and running after a resection?

Thanks

Kim

[coughting]

I also have chorns in my small intestine.  I was on Remicade and feeling much better, then I got a bladder infection and found out that I had a fistula.  So surgery was next.
I tried to get the surgeon (make sure it is a bariatric surgeon who does lapro) to just fix the fistula because I was feeling so much better.  He said no, they would remove part of the small bowel and the ileum and a small part of the large bowel and reconnect.  That this really needed to be done while he was in there.

Surgery, wasn't bad.  He told my family that he didn't know how I had functioned because the small bowel was all wadded up where the chrons was.  He did the surgery by laproscopic with hand assist and this was great.  I had to stay in the hospital for a week instead of 3 days.  I needed 2 units of blood and to be built up before he discharged me.  

I cannot thank him enough for not just fixing the fistula.  They found cancer in the section they removed.  However, it was small and no extra treatment.  Just followed closely by the oncologist.  Will see her from now on.  After 3-5 years it will be yearly.  Actually it make me feel better to know they are watching it.  

The surgeon said after the surgery that I was chrons free, he had taken out all the affected colon.  He did of course tell me that I would always have chrons and it would return usually around the resection sight but hopefully would stay in remission.

It was 2 years June 27th and so far I am doing great.

I know you will do well.  Let us know how you are when you get home.  Do what the surgeon says.  Even though I was in the hospital a week I was back at work in 2 weeks after surgery.  Of course if they end up opening you up it will be longer and everyone is different.  I did not push it.  I was actually feeling fine by then.  Still no lifting etc.  but doing great.

Best of luck

[WhitMar75]

Oh my dear... please do not be worried about the surgery.  It will be fine.  From what you've described you are one of the lucky few with excellent physician care.  Put your faith in the fact that the doctors have performed this operation countless times and that they are best at what they do.  

I always say a prayer that my recovery will be speedy and as pain free as possible.  I have not once been concerned about not coming through the surgery... I have never heard of anyone not coming through this surgery... so please set your mind at ease.

DO make sure to request a consult with the attending doctor on duty and with the anesthesiologist who will be attending your surgery PRE OP...and make it clear with him/her that SHOULD you need additional pain relief meds that you would like those orders to be arranged for and be standing by.

The operation itself isn't bad at all... they give you nice 'happy-happy' drugs to get you relaxed - well, stoned really! LOL

You'll wake up and be too groggy to care about much of anything.
Yes there is some pain, but I assure it isn't extreme by any means.  AND if you have made it clear that you want extra pain management ready for you should need it, it won't be an issue at all.

Your work begins post-op.  You'll need to take the proper amount of time to recover and heal thouroughly.

I can't stress enough how important it is to have support people close by.

As for the book I mentioned... it is probably the most important piece of education you can get when living with this disease.

It was written by a dear woman, Elaine Gottschall - may she rest in peace - who was and still is considered the paramount expert in Crohn's Disease (and other food related diseases) by those who know of her many many years of study & work in this area.

She was the mother of a daughter who was afflicted with IBS... it was her daughter's full recovery that spawned this housewife and mother to, at the age of 47, enroll in university and earn degrees in biology, nutritional biochemistry, and cellular biology.  You see the doctor who treated her daughter, Dr Haas, had passed away and she feared his research would die with him.  This was the man who had saved her daughter from VERY near death and the doctor who had CURED her daughter's disease.

PLEASE trust me this website and book are imperative for you to look at.

The book and more importantly the web community associated with the book is unparralleled in information.  Members discuss meds, moods, good days, bad days, side effects, results, recipes ... you name it!  

Please if you do nothing else just take the time to go to the website www.breakingtheviciouscycle.info and read the link that is titled, "It All Began with a Child".  

I'm positive you can buy the book online.  Try amazon.com

As you can tell I am quite passionate about the information in these above mentioned sources... I hope it will help you and I wish you a full, pain-free recovery.

Take care and keep us posted

WhitMar

[blunderkim]

Good morning, thank you for your kind replies to my question. I've taken your advice and contacted my doctor, I'm just waiting to find out what he's got planned for me! I suspect higher dose of steroids to tide me over until next Tuesday...

When I posted the question last night I was a little flustered and perhaps missed big chunks out of the story. I have had second opinion, the care I'm currently receiving is second to none and i definately believe that the resection, even if i need a temporary stoma, is the best option. My small bowel is serely strictured, and as such even when i get my crohns into remission, i'm in constant pain with risk of blockage. I know that my crohns wont disappear with this op, they wont be removing all sites of inflamation but it's going to be better! We have taken all medical steps to try and avoid the op; imfliximab, azothiaprime (just made me sick) so now i'm settled on 6mp which seems to be the long term plan.  

I'm off work today now, i'm happy to lie in my bed and try to relax, as you said if i'm worried and stressed then i'm going to be worse. What is this book you've mentioned? is it available in the uk?

Also Whitmar75, since you've had a couple of resections, could you advise? How is the op? I'm terrified!

Thank you again for your replies, i'm delighted to have found this site. It's great to have like minded people to discuss

[WhitMar75]

I completely understand your frustration.  I have had 3 resections... and yes it often returns.  I am 23 yrs living with this ugly companion and agree with the above poster who suggests a second opinion.  

The fewer ops the better as the added trauma to your body deeply affects your nervous system (and trust me this is an important part of crohn's), and your ability to cope with the disease in general.  

I suggest a second opinion- go to the hospital if you feel it is necessary... for god's sake don't try to be a hero.... your body WON'T thank you!  And if you can get your hands on this book... "breaking the vicious cycle"  read it a few times front to back.

Take care - hang in there.

[BrandiLynn909]

well i definatley think you need to get a second opinion before the surgery. i totally understand about going in and out of the hospital and thats exactly what they do put you full of steriods, fluids, maybe some antibiotics and some pain meds and then send you on your way. its bs. But only you will know when you need to go to  the hospital. so if you do have to go, don't try to tough it out if you don't have to. you know what i mean? Well the doctors are talking about myself needing some surgery. not reconstructive like yourself but a temporary ileostomy. im not quite sure how i feel about it but if i need it then im going to have to deal with it. but different doctors are saying different things so that why you should get another opinion. you can never have too many opinions. because i recently found out that the procedure you are talking about is very simple, yet the healing process is the hard part. and the Chron's can spread to another part of your intestines or colon. Its a common procedure in Chron's but there is side affects.

hope i helped you out a litttle bit atleast, get well soon and best wishes!!