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Hi,

Just a brief history. I have UC. I started experiencing symptoms in Feb of 2011 and was diagnosed in July of 2011. I started with Asacol (failure), ended up in the hospital (steroids, Lialda, azathioprine started) in Novemeber (while eating the Paleo diet for a month). Had a BRIEF 1 to 2 week remission around January at the end of my steroid taper. And then a reflare. After I started having trouble getting the flare under control with steroids, I started Remicade. It seemed to work the first time! After the second time, I got really sick (throwing up) and ended up having slightly abnormal pancrease/liver levels. Pulled of the azathioprine. The third Remicade infusion did NOTHING and I had tapered off of steroids again. Back on 25 mg of steroids. Had a scope about three weeks ago (so about 7 weeks after the third infusion), and despite being on Remicade and Pred, still had sever UC in my rectum and moderate in my sigmoid to the descending. I should also add that over the past year, my UC has spread from 10cm to 26 cm. I had to delay my fourth infusion due to shingles and just had the maximum dose today. In the meantime, I had to go back on 40 mg of pred as I was going to the bathroom 7x's a day, lots of blood, clots, and usually diarrhea. My GI brought up surgery 3 times - and this past time I agreed to a consult. I feel very fortunate that my case has been referred to the Cleveland Clinic and I have a consultation in about a month.

At this point, even if I'm seeing improvement on the higher dose of Remi, I feel like it's just putting a small band-aid on a gushing wound. I still haven't tried 6MP (although I lacked an positive reaction on azathioprine) and I have not tried Humira. Given that I'm barely responding to steroids and that Remi and steroids are the "rescue" drugs in the hospital, I'm obviously a bit concerned. The two pieces of advise I keep seeing come up on messages boards are 1) don't wait so long - have the surgery while you are healthy and 2) find a good surgeron. Given that my consult is with Cleveland, I think #2 is taken care of (ooo, there's a pun for you!). I'm trying to figure out how to handle one - whether to experiment a bit more or not. I'm would not be surprised if I would need 3 operations given that I've been on pred at about 25 mg. since Nov. 2011.

Anyway, now for the question. One question I haven't seen addressed yet is...what were you unprepared for with the surgery? Were there little things they didn't tell you to expect? Anything you wish you had known? Etc. Thanks for reading and thanks for any input you could provide!
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I am sorry you are going through such a rough time. I had UC for over 8 years then had my first take down in 1993 and had a J-Pouch created 6 months later in April of 1994.

The main thing i remember of what I was not told is what kind of diet I should be on. The frustrating thing to me is that what some people can eat with a j-pouch others cannot. For instance, i can not have any products with milk or whey, not heavy creams or ice cream and i have to be on a low fiber low residue diet. I cannot eat raw veggies or fruit except watermelon.

The only answer I can come up with now is you need to keep a journal of what you eat and how your body reacts to it. Eat small meals, not large meals. Stay away from hot spicy food, corn, nuts and things like that. Chew slowly and drink pleny of water so you do not dehydrate. Avoid foods that will give you gas or take Beano before you eat.

one thing I did learn on this site withing the last wtwo weeks that you should do right now is take a supplement called Probiotics. If you go on the top of this page in this forum, there is a prodcut called VSL3. Probiotics is helpful FOR PEOPLE WITH UC. There are also other brands on the market.

Rocket
One of the common things not told to 2-steppers is that they will have mucus and blood exit the anus. It always freaks new pouchers out, it's normal, but never explained when one is discharged from the hospital with a temp ostomy. Everything I learned about this surgery came from those on this site who had surgery prior to me. I don't think anyone who has not had surgery, can adequately explain recovery.

Sue Big Grin
I came home from the hospital with a drain still
in place. It's supposed to get taken out on Monday.
If you have this surgery you're going to have a drain
put in. Just be prepared for the fact that it may be
hanging off of you for a while until your fluid output
drops off.

The other thing I was unprepared for and it was an unpleasant
suprise was getting a Heparin shot every 8 hours for as long
as I was in the hospital (blood clot prevention). They injected
them in my stomach which added a new level of grief to my already
stitched up, swollen abdomen. They also sting like fire.
I've got dozens of little black marks across my stomach from
the subcutaneous bruising they left.
Last edited by Srf1
I was fortunate to have my sister who has a j pouch fill me in on a lot of things. But I was unprepared for the complication I had after my step one. I developed an abscess in my pelvic area that had to be drained. The only way to reach the abscess was to put in a trans gluteal drain. That means they had to punch a hole thru my butt cheek to insert the drain tube down to where the abcsess was and there it stayed for 6 weeks. Nothing like walking around with a tube coming out your but cheek with fluid draining into a bag strapped to your leg. Ugh, that was a LONG six weeks! I survived it though and i still love my j pouch!
These answers are sooo good! I too was shocked by the heparin shots in the stomach!
My first surprise after waking up from lapro surgery was the severe pain in my shoulder from the gas! They had to shoot me up with meds several times to get that pain under control. My next shocker was that my epidural only worked on half of my body so the other half could feel all the pain. Im sure I am unique but both times I had an epidural, it didnt work everywhere. I have found everyone's experiences to be a bit different. I'm not sure we can prepare for all that "could be" but it's good to gather all the info you can. I get anxious when something happens I didn't expect so I did ALOT of research. I spent almost two years trying a ton of drugs for my UC and nothing really worked so, ya, I regret not having surgery sooner. I guess you know when its time and when you've done enough.
Hi,
The only thing I was not prepared for was just how long and hard of a recovery I was in for. I was warned by doctors & read that it's a tough recovery for most but I was young enough (relatively young-I was 40 yrs old when I went in for step #1) & was not actively ill so I really didn't expect to so incapacitated post op. Even after I went home, getting up & down & even walking was difficult due to stomach muscle soreness. I had a combo lapro procedure & my stomach muscles were not cut but pushed aside & that took months to recover from. Step #2 was for me was much easier to recover from. that's typical. That's 1st Step is a doozie! (I think I stole that from a Bugs Bunny cartoon). The last thing I want to do is scare anyone about this procedure because I am a huge success story & LOVE my pouch. I would go through it all again if given the choice. Post op is tough. Great questions though.Best of luck.
I wouldn't wait to you are really sick. I wasn't prepared for how weak I was for weeks. I couldn't get myself off the toilet without grabbing on to the bars in the bathroom and pulling myself up. Sometimes it took several attempts. I also wasn't prepared for my digestive system taking several weeks to wake up. I was nauseated all the time and scared to death of food. I had to have an NG tube in for several days and finally I was able to eat and go home.
quote:
I had to have an NG tube in for several days


The NG tube is something that nobody plans for, and the truth is most people never have to have it. It is indeed a truly dreadful experience and one that I will never, ever forget, but it's not necessarily something that anyone should be preparing for unless they are obsessed with knowing all worst case scenarios. I am such a person, and I feel the thread starter may be too, but I am not sure it is a great idea to focus or dwell on horrible possibilities that may never happen.

The truth is that I did not know much about the NG tube before my surgery and I am glad I didn't. I also did not know very much about ileus, postsurgical infections, or dramatically low potassium levels after surgery and how they get resolved. What I did not know, didn't hurt me. All those issues were dealt with, and they were dealt with well by the hospital. My more significant advance knowledge would not have changed anything for me, except maybe to make me worry a bit more. It changes nothing in terms of my feeling that it was a necessary decision to have surgery, and one that likely saved my life.
Last edited by CTBarrister
I was totally unprepared and surprised when I found myself unable to urinate without catheterization after step one. So, I left the hospital with a new ileostomy and a urinary Foley catheter and bag attached to me. For "convenience" I was given a small leg bag with a "flip-flow" system and learned how much easier males have it when they need to pee and no toilet is around! Bushes became my best friend. When the shock wore off and a wonderful urologist explained what probably happened to me and a protocol for seeing where I was headed with this challenge, I calmed down. I learned how to self-cath and the bag and Foley were gone! Big relief! Guess surgeons can't/won't tell all possible negative outcomes to this surgery or they'd never have any patients.
Regarding #1 - you'll probably know when it's time to throw in the towel and have the surgery. It seems like you realize that surgery is in your future. You may not have to have a 3-step procedure even though you've been on steroids. They'll figure that out as they go. And you ARE going to the best.

You could always schedule surgery knowing that you can cancel it up to the minute they put you under (I know - this sounds like it's unfair to surgeons, OR's, staff, and all that.) It's often the lack of control one is concerned about regarding surgery. If you tell you that you're in control because you can cancel, that sometimes makes things easier to deal. Of course, once the colon actually knows that impending divorce is imminent it will start acting all nice and try to get you to believe that it's going to behave itself from now on. Don't believe it. It's a liar.

Anyway, you can make a surgical appointment for the future and also try the other drugs to see if they offer any relief. But I'm sure you know that being on Prednisone long-term can cause some other problems that in the long-run might even be worse.

Good luck with your decision. And keep asking questions. The people on this board are the most caring and knowledgeable around and they're always ready to give helpful advice.

kathy Big Grin
For me I don't think I was prepared for the emotional and mental toll it takes to go through this surgery. I did have complications (internal bleed, blood/plasma transfusions, a few days in ICU) and needed NG tube as well as picc line on both surgeries. I went into the first surgery on prednisone, failed remicade after 8 months, and azathioprine never worked. As Kathy mentioned you can schedule and cancel which is what my plan was. My UC got so bad so fast we had to move my scheduled date up allowing me no time to prepare. I think that was best for me as I was quite anxious about all of it. Today I am 1 month post takedown and I have to say I'm beginning to see the light at the end of the tunnel. It's a rough journey at the beginning. I don't think there's anyway to sugarcoat this. If surgery is in the cards for you stay positive and just remind yourself that it does get better eventually. Good luck
I'm the original poster. I will not dwell on the NG tube! I'm actually overweight right now (I hope not too overweight for surgery) so hopefully I wouldn't need it. I had read about it on someone's blog. The one thing I didn't think about were the stomach shots!

What about after surgery? Not in the immediate days, but months afterward. Things like "butt burn," potential night-time leaks, making sure you have lots of cotton underwear, etc.

Thanks!
When I was home I would get on my knees to empty the bag. Out in a public restoom I would carefully stand over and empty it being very careful that none of it splashed up. To be honest I stayed pretty close to home the 3 months I had my ileo. I just had a really hard time with it.

On your other question about after takedown...for me I didn't have any night leakage. I never had bad butt burn...more like butt irritation and the Calmoseptine ointment works great on that. I still get it and probably will forever. I think it just depends on what I eat.
I don't know about any else but before I ever had my first surgery to remove my colon, I kept resisting because I did not want to have surgery. Howevever, you kind of know that there is no other recourse to take because you have had enough. I was also not prepared that before I had my first surgery, I had to go to the hospital the day before and have a blood transfusion - 2 pints worth. I remember my surgeon called me at home and the first thing he said was I cannot do the surgery and before I let him finish, I got really ticked off because I had by then mentally prepared myself for the surgery. He could not perform the surgery because i lost so much blood from the 8 plus years of UC.

Rocket
I have a BCIR (continent ileostomy) not a jpouch but can speak about surgery itself. I had no idea how bad the gas is. It is also not the same gas I ever experienced with a colon. I never had shots in my gut. I did have a drain in my rectum area since that was removed, a foley and a gastric tube. Hospital I had my surgery in doesn't believe in NG tubes doing a good enough job, so gastric it was. One reason I also went with them, no NG tube for this girl. The stomach cramping from the gastric tube was hell.

You honestly just can't prepare for this surgery it is rough. Good pain meds and ask a lot of questions at the CC so you are well informed at all times. I have had about 10-12 surgeries over my lifetime and I am never prepared for what the post op is like.

I never had UC or a bad working colon so for me I went from a perfect colon to a new organ and way of life. The way food now feels going through my small intestine can be hell. If I could have held on to my colon I would have. I have a lot of regret even though I had no other option besides death. But for people with UC I hear it is a big relief yanking the sucker out.
Regarding emptying the appliance. Someone here mentioned sitting on the toilet 'backwards' - i.e. facing the tank. That seemed like a very good method since one could move further back from the toilet seat. Sitting in the regular position, the tank prevents moving backwards. This method means no kneeling on the ucky floor. Another trick is to line the toilet bowl water with toilet paper which will lessen splashback and noise.

I hardly remember how I emptying but I think it was sitting and facing forward on the toilet seat.

Regarding Rocket's post about a blood transfusion. I did an autologous blood donation before my last surgery. Of course, since I was prepared it wasn't needed. (I should have asked for it back.... Roll Eyes) I'm not exactly sure but I think autologous transfusions are what Lance Armstrong is accused of - blood doping. And I'll tell you, I can really understand vampirism - a blood transfusion when your levels are way down is like speed or caffeine or something. It's unbelievable how quickly the energy levels change.

kathy Big Grin
Well, I might not be the best person to answer this question. My surgery was performed as an emergency, so all things considered, I was more or less unprepared for the entire thing peroid. But, I would say I was most unprepared for having post-operative ileus and a full obstruction, which required me to go on TPN. That was most definitely unexpected. But I was told (afterwards of course) that post surgical ostructions are unfortunately rather common, especially in the first 2 weeks when swelling and scar tissue is most pronounced. That's why it's so important to follow a low residue diet.

Oh, another think that freaked me out was that my belly button "disappeared." I had an open surgery and I was stapled up and a little swollen. In actuality, my belly button was still there, just folded under the staples. But I was absolutely shocked when I first saw my stomach, before the staples were removed. The nurse had to assure me that it was still there.
I always emptied my bag sitting on the toilet. I have an elongated toilet and it is easier to empty on elongated versus round. After you get the hang of it, it's fairly easy to empty and quick too. I didn't leave my house too much between the 2 surgeries but unless the toilet was one of those really small round toilets I never had a problem in public. I did empty my bag often. For some reason it filled very quickly. I would say I spent more time in the bathroom with the bag than the j pouch to the exception of nights. I slept better with bag..maybe got up once a night to empty. I'm up all night now. I think I'm on alert constantly tending to every urge even if I don't go. I'm only a month out so hopefully that will change soon.
This is an interesting thread with good responses so far. The only thing I can think to add is that I was unprepared for the hierarchical structure of a hospital and thus the difficulty in seeing the "big picture" about what exactly was happening or why a certain procedure or drug was necessary. It would often take me a day or two to put the pieces together from different sources, or obtain a definitive answer from the few people in the know.

My NG tube experience is an example (although probably not the best one). It took a while for me to learn exactly what it was, how it functioned, and why it was necessary. One minute I was hurling bile in a bucket and the next I was having a tube shoved up my nose. I was resistant at first, but once I learned more about the procedure and understood it's purpose I was good with it. I guess I am one of those knowledge is power people. I'm not the least bit blissful in a state if ignorance when it comes to my health.

With respect to the NG tube, I had it done twice (the result of having pulled it out during the night while in a drug addled state). I was actually begging to have it done the second time because it brought such immediate relief. The worst I can say about the procedure is that it can be annoying. I think people worry way too much about it.

A final word of advice on the NG tube: If you find out you need the procedure and this is your first time, request that someone with experience do the insertion. An experienced hand did my first one and it went very smoothly - a swallow of water and it was in. The second time a resident (or possibly intern) was learning on me (under supervision). She had to make a couple of attempts (I ended up requesting a nostril switch), but because I knew what to expect, it was not a big deal. I was happy to help in her education and even happier to feel so much better.
In reading Tin Can's post above, my experience in general and on the NG tube in particular was virtually identical to Tin Can's. I was vomiting when I had the NG tube inserted, and I resisted, but the Doctor physically overpowered me and quashed my resistance. I am actually glad that he did in hindsight. At that time I only weighed 135 pounds and I was easily overpowered; it would be a tad trickier now because I weigh 185.

The Doctor who inserted my NG tube, I later learned, was a Medical Doctor in Russia who came to the USA when the Iron Curtain fell (this was back in 1992). He was forced to go back to the medical school at Mount Sinai because the New York authorities did not recognize his Russian education and training. Thus, although he was a middle aged man who had years of experience as a medical doctor in Russia, he was reduced to the status of Resident in training and was teamed with the younger medical students at Mount Sinai. So I think he probably had a bit of a chip on his shoulder being forced to do this kind of work, but it was to my benefit because this guy was clearly no stranger to the NG tube. I was thrashing, vomiting, and fighting with him, but he simply overpowered me and forced it down, quickly, brutally, ruthlessly, and very skillfully. I have very small nostrils and I thought there was NO WAY that the NG tube, which is very thick, would fit, but it seemed to go down with less internal resistance than what I would have expected.
Last edited by CTBarrister
Yes, to expand on the NG tube, I had a horrible time with mine as well. Naturally, every time I became blocked and needed a tube, it was during the night shift. The first time, I had no idea what the tube was for, and the nurses had difficulty inserting it, though in retrospect, it was because the tube they were using was too large. I was also resisting, again though, a lot of that was because the tube simply wouldn't go in. I could feel it hitting against the back of my nostrils, and I recall the nurse actually saying she felt the tube wasn't going in because it was too big. Finally, someone found a smaller tube, and one nurse pushed me down while another put it in. Unfortunately, it was pressing against my vocal chords/larynx and I actually gagged it up because it wasn't in properly. They ended up leaving me for the rest of the night without a tube. In the morning, the doctor actually came by with a pediatric tube and that one was inserted in seconds.

Moral: ensure you have somebody who knows what they're doing and don't be afraid to ask for a pediatric tube. The difference was night and day.
Last edited by Spooky
The thing I was most unprepared for was how little of an appetite I would have following surgery. I tried to force it not wanted to lose any more weight, and ended up with the NG tube. I do have to say my experience was slightly better than others, but it still took 4 tries to get it in. One nostrol was too small, second time I gagged it up, third time showed the tube was defective and wouldn't drain, so 4th time was the charm. My best advice is to listen to your body, and if you're not hungry don't eat.

As for the ileostomy, I am short too. The bag hung down a bit when I sat on the toilet and allow me to empty it. I would also suggest getting an ostomy belt and/or wrap to help keep the bag close to the body. It helps with keeping the seal, hiding the bag, and the feeling of the bag hanging off of your belly. The belt I got from my ostomy supplier and the wrap I ordered from ostomysecrets.

I tried EVERYTHING before I opted for surgery. I didn't want any doubt in my mind. My last resort was Humira which did absolutly nothing for me. I ended up very sick going into surgery.
NG Tube I always hated it with a passion. Extremely painful to me everytime I have had it done. Yes you drink water but it never helped me. I have had that done to me at least 5 times awake and also had a Catheter done awake too and I would soon have to have the Catheter put in me. Not easy for a man to say either.

The last time I had a NG Tube put in was in April 2009 after my surgery from Kidney Cancer. I was supposed to be in the hospital only a couple of days and be discharged on the 3rd day. No one at the hospital listened to me and the doctor wanted me to start taking in liquids by the 2nd day and solid food by day 3 before I was discharged that afternoon.

Monday was surgery, Tuesday liquid diet and Wed, solid food and discharged after lunch.

I told my doctor the risk involved because if I am not moving my bowels, i should take in any food as I knew from prior experience. Well, no one listened to me and in fact, my doctor told me not to be a wous and so I did as instructed thinking maybe I am just over reacting.

Well, day 3 is here and I had yet to pass my bowels and didn't feel good and had a 103 temperture. The nursing staff couldn't understand what was wrong but I knew. I told them to get the NG Tube and if you put that in me, all the green bile will come out of me.

None of the staff could do it. They tried 4 times, twice in each nose and failed. Finally, realizing the situation of it all, I asked a question, "How is it possible, that none of you can get this thin tube up my big Jimmy Durante Nose?" They laughed and then got an expert to do it and sure enough, all this green gook came out.

The next day, my surgeon came in and apologized to me and I was there another 5 days, each day, I had to have a chest x-ray and an ultra sound.

The other thing about this NG Tube, your throt is real sore and you are dying of thirst but cannnot drink anything, although I would sneak and suck on ice chips.

Rocket
After reading about the NG tube experiences folks
have had I really feel lucky that my system woke
up so quickly after surgery. Day two I was passing
gas and some liquid stool and they placed me on
a liquid diet. I was a bit nauseated on day two but
got a shot for acid reflux which helped greatly. Day
three by dinnertime and they bumped me up to a semi-solid
diet. Day four and they started me on the low residue diet.

I believe the key is to get yourself up and moving
as quickly and as much as you can tolerate as soon
as possible. Raise your arms up over your head, bounce up
and down, sit up in a chair instead of laying in bed!
quote:
I was also resisting, again though, a lot of that was because the tube simply wouldn't go in. I could feel it hitting against the back of my nostrils, and I recall the nurse actually saying she felt the tube wasn't going in because it was too big. Finally, someone found a smaller tube, and one nurse pushed me down while another put it in.


At the time of my unsuccessful resistance I looked at the NG tube and I concluded there was no way it was going to fit, because I have a small nose and pencil thin nostrils. The conversation between me and my Russian doctor, before I resisted and he overpowered me, went something like this:

Me: "Dude, there is no way that thing is fitting in my nose. That looks like the extra large adult size and I think you need to go back to the supply closet and get the kiddie size for me. I got a teeny nose mister."

My Russian Doctor: "Dude, you need not worry. One size fits all."

He then forced it on me, I resisted, he overpowered my resistance, and in the NG tube went.

From our conversation I had always believed there was only one size NG tube, but this was 20 years ago, so maybe there was at that time and they decided that by making it smaller it might be easier to insert for psychological, if not physical, reasons.
Last edited by CTBarrister
OK. I guess I will sound a bit negative (sorry). However, I was surprised at the post-op pain and how weak I was afterwards(for a couple months). I was pretty sick previous to the surgery and it is a major surgery. However, as the days go by the weakness and discomfort do improve. I had a 2 step open surgery. My surgeon wasn't doing the scope procedure at that time (but he is now). I think the recovery is better if you are scoped. I also had trouble with my stoma but got great help from the ostomy nurse and from this site. In the end, all was well. Everyone is different, so please focus on the positive. Best of luck!
Thanks all for your input. I'm pretty sure I'm going to have surgery (will wait until after the consult for final decision). My full dose of Remicade has alleviated some symptoms, but it definitely did not put me into remission. Plus I've been on 40mgs of Pred for a week, up from 25 from the two months before. Now I wait, try to stay as healthy as possible, take walks (on a treadmill, no wandering from the bathroom for me!!!), and lift some light weights. And eat "healthy" as my stomach permits. Many people probably know how it goes - sometimes the only thing that seems appetizing are things like oatmeal or mashed potatoes!!

It seems that many GI doctors and patients (who haven't had surgery) feel that surgery is kind of "giving up" but I've decided it's a proactive/taking control step to make myself better. Surgery is scary, recovery is hard (and I'm sure I won't "get it" until I'm in that situation) but the many success stories give me hope that I can have my life back.
quote:
From our conversation I had always believed there was only one size NG tube, but this was 20 years ago, so maybe there was at that time and they decided that by making it smaller it might be easier to insert for psychological, if not physical, reasons.


I was led to believe that there was more than one size since they told me they were using a "smaller one", but beyond that I couldn't tell you how many different sizes the tubes come in. However, even there is "one size fits all" for adults, there is definitely a pediatric size tube. They called down the pediatric ward, and the doctor brought one on his way up. It's the only one that went in and stayed in for me. So there is the option to at least try the pediatric size. Then again, I'm petite so it may not be an option for everyone.
Spooky-

You are most definitely correct, there are pediatric and adult sized nasogastric tubes based on the research I did on this. My tube insertion was done 20 years ago and I accepted what I was told at that time by my tube inserting doctor who said "one size fits all." They definitely stuck in my nose an NG tube that looked more appropriate for horse nostrils than my small human nostrils. I am still kind of shocked and surprised that it went in without much internal resistance. I attributed this to the skill of my doctor because as he was inserting, I was vomiting, thrashing, and physically resisting him. Yet he got it down swiftly and smoothly. I really think it could have been a lot worse than it was. But psychologically it was tough because I really did not believe it would fit in my nose, but somehow he made it fit. I still do not understand all of the mechanics and physics of it. All I know is he got the job done, I needed that NG tube, and I had it in me 24 hours sucking a lot of stuff out of my body, more than I ever imagined my body could produce. The whole thing was a real eye opener for me.

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