Proctocolectomy boy Surgery 8 days from now

[cleuger]

Dr Changed Surgery Date now September 4th

Boy am I having overload of anxiety and to top it off I'm recovering from a nasty virus was coming out both ends. I can't seem to get over 100 pounds what's going to happan when I have surgery are they going to give me something by IV so I don't loose anymore weigh? I know I've had TPN before is there anything in there to help either maintain or gain weight? What also is a bummer is the hospital where I'm having the surgery is of 3 1/2 hours from where I live the ride home should be interesting any tips on how to sit on your butt after rectum is removed? You guys are wonderful thank you for all the advice you have given me so far.

 

[DJW]

Hi cleuger.

My best friend in the past was an inflatable rubber donut. What relief it brought. Regarding TPN, ask the surgeon about it. They may put you on it post surgery while you're getting back to solid food.

You've got all of us behind you. Sending you my support.

 

[cleuger]

Thanks so much I'm feeling a little better about everything I got my first samples of coloplast there other day I have no idea how they work I have feeling I'll learn quickly. Yeah I'm going to mention it I only weigh 92 pounds right now weighed myself this morning I had a stomach virus over the last few days which contributed to extra weight loss plus I have no appetite. Hoping all that changes after surgery. I'm such a spaz when I called the reschedule my appointment for the stoma nurse to mark where my stoma will go I asked the surgeons nurse if she had ever lost anyone. Gratefully she said no!!! I'll keep everyone posted as I go I see stoma nurse on the 26 and surgery on 28th

 

[Connie01]

I was told to use an egg box type cushion. Definitely not a donut. It puts too much pressure on the wound underneath. Good luck, you will soon be worrying about gaining too much weight!

 

[Connie01]

Oh and make sure your stoma is positioned so that the bag does not go over, even partially, your belly button. Makes it awkward and more likely to leak in my experience.

 

[cleuger]

Those r good tips the car ride home is going to he a little rough I Walmart has those egg crate foam things. Ahhh ok so closer to the side and further away from the belly button.

 

[cleuger]

Decided when I go down to Fort Lauderdale Tuesday to get marked for my stoma I'm going to get a hotel or I would have to turn around and come right back in 2 days I don't want to do that and if any of u have ever drove I-95 towards Miami you'll know how ridicules the drivers can be down there and traffic is usually really bad. So I'll be in Fort Lauderdale started new Tuesday. Will I be awake at all after surgery where I'll get bored I didn't know if I should take my nook or not.

Cindy

 

[DJW]

Hi Cindy. You'll be awake and you'll get bored. Keep on top of the pain so you heal faster.

 

[UnXmas]

I'm extremely underweight, and had TPN after my first ileostomy surgery. However, this was only because I developed post-surgical illeus, and so could not take in any food orally. Most doctors avoid TPN if possible, as it comes with quite a high risk for infections - something about the sugar in the feed and its direct contact with your bloodstream. I'm sorry, I'm rubbish with the scientific information, but it was basically explained to me as nasty bugs are attracted to the sugar, and then get into your blood!

That said, my surgeon did suggest I should be on TPN again during a recent hospital stay, because it's been so hard to get weight on, but he wasn't in charge of me that time, and the doctors who were were much keener on using supplements - Ensure, Fortisip, etc. - to gain weight. I was also tried on an NG tube, but my digestive system would not tolerate that at all.

I think different doctors just have different ideas about the best way to gain weight, and different things suit different patients also.

It will depend on how you feel after the surgery. You should probably be prepared that you will lose some more weight. It's unlikely that you'll be able to eat a diet with enough calories to put weight on in the days after the operation, whether or not you use supplements. NG tubes and TPN usually only give you a small number of calories at first, and the amount of feed is gradually increased as the doctors assess how well you're tolerating the feeds. So it may be it's not worth bothering, if you're only going to be in hospital a short while. You'll want to get to eating real food and/or supplements as soon as possible in order to go home.

You may well find liquids easier to manage at first, and your doctors may want you to follow a low fibre or soft diet that is easier on the digestive system when it's healing. I would definitely recommend sticking to this if that's what your doctors suggest! There are foods that should be avoided with a new stoma - your doctors, stoma nurses or maybe a dietician should advise you on this, but there are plenty of websites there telling you what you can and can't eat, and there are people on this forum who will be happy to tell you. Luckily the diet that's advisable with a stoma does not get in the way of trying to gain weight - the main foods you may need to avoid are some fruits, vegetables and whole grains. You can still eat many high-calorie foods.

You will learn very quickly how to use the stoma supplies. I'm very lucky and have excellent stoma nurses. If you're not so fortunate, post here any problems you have and you will get a lot of helpful advice!

 

[SupportiveMom]

My girlfriend made her own egg carton pillow to sit on because she couldn't find one. She also keeps her own package of fancy straws she buys. It makes her laugh drinking out of curly straws & such but she says anything that can give you a smile is worth doing! Good luck.

 

[cleuger]

Well change of plan They have now moved my surgery to September 4th due to overbooking or something like that. In the meantime my abdominal fistula that's connected to my bowel has opened back up. I am now passing some yellowish puss from it and farting from it. Lovely!!! It hurts like hell and my back is killing me they are suppose to be putting me back on Flagyl till surgery. Someone please tell me this will end.

 

[Flarkie]

Well change of plan They have now moved my surgery to September 4th due to overbooking or something like that. In the meantime my abdominal fistula that's connected to my bowel has opened back up. I am now passing some yellowish puss from it and farting from it. Lovely!!! It hurts like hell and my back is killing me they are suppose to be putting me back on Flagyl till surgery. Someone please tell me this will end.

Oh this is no good! Wel I will give you the positive view: on 9-4-2014 you will get your surgery and recover greatly from it! So until the time of surgery make yourself as comfortable as possible. Painmedication, books, movies, games etc. Keep hope and have faith!

 

[cleuger]

No it's not good I go to see my surgeon and the stoma nurse tomorrow it's in Fort Lauderdale I am packing my bags and begging them to please fit
me in somewhere between now and the 4th I can't keep going like this I have no appetite I'm about 90 lbs they have to fix me. I don't really take pain meds my gastro would never give me anything tramadol is the strongest I have they don't work trust me. This fistualas hurts pretty bad.
Thanks for your support
Cindy

 

[Flarkie]

Wel in that case sorry for my misperception of the situation. I didnt know the pain was that bad. Hopefully they can help you out! Keep us posted and good luck!

 

[cleuger]

No worries everyone's pain tolerance is different I just happen to be a wimp : ) I appreciate your support I really do this frigin disease will make you crazy.