Not happy news - in need of nerves!

[Keara07]

Well, *sigh*, looks like I am on the surgery route and am totally bummed out by the prospective. I went to the doc yesterday and was taken off Imuran due to an odd reaction, and he is also (yea for this) tapering me off the predisone at 5mg down per week so should be off in a few months unless I have to slow down the taper....

But, with remicade out of reach financially (I do need to put food on the table for 6 people!) he is strongly advising for surgery and sooner than later then a maintenance program of drugs? (pentasa I think as I am still on that). I need surgery to remove a section and repair internal fistula.

So, anyone go through this and what's the per op and recovery like? I have an appt for my consult for the 18th, have had it since Jan, but he was going to call him to move it up to hopefully speed things up and help me out.

I am most leary of the recovery I think and what it may entail. Both pain although I know you can have meds for that, but also time. I have always had an infection after surgery, so that makes me nervous too - they think I have a kind of metal allergy. I know I'll get the info at the consult but I am nervous now and I'd love to get rid of some of my nerves of jelly right now.

PLus, I know it isn't a cure but he thinks at this point if I can go through this and get into some kind of remission even for a few years (even one) it may be worth it.

Thanks for listening all.

*sigh*:confused2:

 

[Kev]

Hey Keara... I responded to this in another post, but just in case.. A resection for me was a total breeze. Obviously, there's a bad section with a fistula that your dr thinks needs to come out.. I had a foot N half removed the old fashioned way. I had my op early (knocked out around 7 AM).. was assisted to take my 1st walk with the aid of 2 nurses (I'm 6' 3", 240 lbs) a little after noon that same day. I was on morphine pump for 2 days.. home within 6.. I used as little of the morphine as I needed.. (and you may opt for a spinal instead). just to get comfortable, or sleep thru the snoring of others on the ward mostly. The re-coup at home wasn't a big problem... I didn't have anyone to assist me in getting out of bed, or fixing lunchs, etc.. I was given Tylenol 3, but preferred not to use them whenever possible. I used plastic wrap to cover my incision for showering AS soon as I was permited... I did have a little post op infection in my sutures, and there was some drainage, leakage.. but I used sanitary pads to take care of that... and since I wasn't taking any immuno suppressor meds during post op., it cleared up nicely on it's own w/o needing a/b's or follow-up.
I literally had the best time of my life during the 6 - 7 weeks post op recovery.
course, I didn't have little kids to look after, feed, clothe, well, you know it all.
So, there you ARE going to need help... cause you arent' going to be able (no matter HOW good you feel) to do any lifting, stretching, bending.. even stairs can be a challenge. Break those rules, and you ARE asking for complications!
Even if you luck out, and they do your procedure all laproscopically (an option?)

 

[drew_wymore]

Awww Keara =( Sorry to hear that things aren't going so well. I can't answer the surgery questions (yet at least, I am looking at the same route as you). But my thoughts and good vibes are definitely headed your way.

 

[Jeff D.]

Keara I really hope you will start feeling better. You are in my prayers.

I've never had surgery before so I don't know what it's like. I wish you a fast and safe recovery.

 

[Keara07]

Thanks for the replies - and the info. My reading has been about the same. My GI said the surgeon will fill me in on what may be the best route overall - and said he thinks the best way for me right now is to *gut me* but I don't think, or he never even said, anything about the bag...I think it's a resection deal and closing off fistula if that is what they do. Oh well, more info to come. I do feel better today, more positive.

And on the really bright side, the medication option may be opening up as I have a wonderful extended family that has offered some help if I decide to try that route....means more decisions, means more options too. This would be such a simpler disease if things were more orderly!

Oh well, What's life without a bit of *unknown*... I liked it when I travelled to work, perhaps just not my recent travels the *unknown* pottys of the world.

Bleah.

 

[Kev]

Well, was he referring to ostomy/pouch procedure... OR was he suggesting that an old fashioned 'open' resection was perhaps better than trying to do a resection AND fistula repair via laproscopic approach? The 'ultimate' surgical solution is one a person has to feel is right for them.. Like, personally, I'm still fighting to avoid it
BUT I wonder, IF I were to go thru another, even a third resection, would I feel its easier just to get it over and done with... Like, we used to have a lot more members who've gone that route... but a lot of them have stopped visiting. I wonder if it's because nowadays, they are symptom free? Food for thought!!

 

[Pricey]

Just stumbled upon here, I think I'm in a similar boat Keara recently being told surgery is what I have to look forward to in April at some point currently on prednisolone for the time being to keep inflammation down.

Took a horrible reaction to my adalumimab medication which hadn't happened before even the doctors seemed baffled and taken back luckily it happened while I was in the hospital and not on my way home.

After spending last week in hospital due to a bad flare up here in Glasgow, Scotland I was even more wary about the operation due to several mistakes made by the doctors I was assured this was due to the ward I was shuffled to and that post op would be very different.

Have you met with any surgeons yet Keara?

 

[Keara07]

Not yet - 18th it still looks like but I am spending my time researching options and procedures to be more knowledgeable. I have been going into all of my appointments so uneducated that I feel like I have more a guinea pig than a patient.

On the flip side, coming off the imuran was the bext thing to do - some of the weirdo effects have relinquished - no noticeable change yet with the pred drop but it's only 5mg drop thus far. I will hope to avoid that med again in the near future as it didn't work well, and is causing more grief.

And on an even flippier side, I have been having better eats of late - still lower on the cals, but I figure if it'll hurt with arrowroots or apples, time for an apple and I think the better *real* food has also perked me up mind-wise. I can't egt away from the discomfort so I may as well enjoy a bit of what my body is craving - and nope, not any junk, but meat and fruit, and veggies. Fingers crossed in the next couple of weeks for more info and plans! whew.

Hope you stay feeling better Pricey-

 

[Keara07]

Well, darn it. Had a call today and got my appt moved to today for the surgical consult, which is good news - and the determination is surgery required - resection and fistula repair (mine is internal and is basically bypassing everything thus my issue with malnutrition and black mouth if I eat less than 1200 cals it seems but I would oh so prefer to eat, well, nothing) .

But wait times as they are, unless I go to an emergent case, I'll go in in the summer - August?. No worries - The doc was fantastic and very informative for sure, one of the best visits of late. Should be a resection only unless he finds some icky stuff and would then need a temp bag, but at this point, he doesn't think so. I hope the passage of time doesn't make any difference that way. What do ya'll think?

Of course, apprehensive to wait for anything in case things go bad - but I won't worry about that too much. Contiuing my taper (he couldn't believe I was still at the high dose, but thinka I may not be able to taper too too much before the surgery as I nearly jumped off his table on examination, as per usual for me)...but I hope to soon - no other meds anyway but for a pain releiver if I ever get a prescription so it's time to suck it up for awhile I guess. Any ideas on a preferred pain releiver out there in case I have to submit...I am pretty stoic but 4 months may be awhile to cope afterall.

any ideas on relieving some symptoms....anyone think I should go more liquidy on a diet or see a nutritionist or something? I have been playing around a bit with some melon type fruit and it's going ok...I have BAD distention (like 6 inches on the waist in an hour) every night regardless of what I eat (even if just liquids)....Just curious if someone has a thought or two out there for me for the next few months on a preventative diet.?

 

[Jeff D.]

I'm glad the consult was okay and you liked the doctor. I have not had surgery or anything so I don't know what to tell you there. I would ask your GI about a nutritionist that knows a lot about stomach disorders so you can hopefully feel a little better. I would try a warm liquid diets. Foods that are too cold can actually feeze up your intestinal tract and cause it to stop working temporarily. I hope you can cope with this for another four months. Keep us updated on your condition and if you ever feel bad and just want to rant and rave come onto here and yell as much as you want. We have all been through the pain at some point. Just don't let the disease get you down.

I'll keep you in my prayers.

Jeff

 

[Kev]

Hey Keara... I would advise asking for a referral to the Dietary Clinic at Dartmouth General... the nutritionist there 'knows' IBD, and is an amazing source of help.

As for an 'August' operation... Talk with the surgeon, ask whether vacations will be a problem (I'm not kidding... surgical staff who have to cover other hospitals or departments during peak vacation periods can cause big delays)
Been there, done that, got delayed, postponed long before I got johnny shirt