Andrina, your surgeon is presenting the hoped-for result, and many people really do get off all meds. Some of us continue to have things to deal with (I’m in that group), though even so it’s generally better than IBD.
They usually do send the colon for pathological examination. In my case the pathologists still couldn’t tell what to call it.
Andrina posted:That sucks. I'm getting surgery to be done with IBD. My surgeon even said I can stop all my medication after surgery.
You are most likely getting surgery because your colon is done and will only become cancerous at this point. At some point with UC the colon begins to exhibit dysplasia and you become an increased cancer risk. Surgery will not necessarily rid you of IBD, because IBD is just a manifestation of underlying autoimmune disorder which is not addressed by surgery. Chances are you will have a good result and will not need as many meds, and maybe none. Chances are high that your quality of life will be better than before but surgery, but it doesn’t necessarily mean no more meds and no more autoimmune disorder. The autoimmune disorder can manifest in the future in other ways- as pouchitis, Crohn’s, irisitis, or RA. Whether you have surgery or not will not impact this possibility, but surgery can improve your immediate state of health, and spare you from colon cancer or toxic megacolon.
Surgery vastly improved my quality of life. That is a realistic goal.
Thank you for all this information. It's a lot to think about. It's better to be prepared than to be surprised later if something happens. All in all I look forward to the surgery. Just alone the absence of constant inflammation will improve my body. I appreciate all of your support and if you wish I will keep you updated about my procedure and recovery.
Yes, keep us informed and good luck! Lots of us have good outcomes! I had mine done at 60 and 61 and doing well.
Surgeon said he's only going to give me a week of pain meds. Is that enough?
How long is the hole on my belly (stoma) going to hurt? There will be a hole with stitches I can't believe it will no longer hurt and be a hundert percent healed after one week?
Also can I expect my GI to do some after care and still see me between the 3 steps and after? Or will I see a different doctor?
For me, I never needed more than a couple of days of pain meds. I used Tylenol extra strength. I don't remember how long I had pain after the first surgery. It does help to walk as soon as you can. I have not seen my GI doctor since before my surgeries. Any questions I had were answered by my surgeon's office.
Tylenol often doesn't touch my Colitis pain. Will it help with the stoma healing pain? How long does it take to heal?
Try not to take too many pain meds or you will set yourself up for an ileus and the NG tube and trust me you don’t want to go there. One week should be enough.
What is an ileus and what is an NG tube
Andrina your bowel peristalsis stops when it’s cut. Ileus is when peristalsis doesn’t come back after surgery when it should, and the resultant buildup of gastric juices which is not going down causes intense nausea and vomiting. You need to understand the biology and anatomy that is involved with this surgery. Pain meds increase the likelihood and duration of an ileus. It’s a blockage due to your intestines not moving due to peristalsis being stopped after surgery for a prolonged period of time.
The NG tube is treatment for an ileus - it’s a tube shoved down nostril and throat and into your stomach and bowels, acting as a vacuum cleaner to suck out the fluid that is “stuck.” Until you been through this you have no clue how much bile and gastric fluid your body makes. It’s incredible.
Take pain meds of course - but be judicious with pain meds, because they prevent peristalsis from coming back in a timely manner and also slow down peristalsis.
I also didn't need pain meds after surgery. If I had to cough or sneeze i hugged a pillow. I was given codeine Tylenol 3s. I use tramadol a lot now because the pains I get can be pretty bad. Worse than surgical pains. I have what my GI believe is scar tissue build up from the surgeries and inflammation after the surgeries which has even caused some partial blockages. But a lot of people are ok after surgery. When I had ileus both times and was throwing up it felt like my insides were being torn apart. They didn't even give me any hardcore pain meds for that since it would make it so my bowel took longer to wake up. Sounds cold hearted but I understood it.
If you do by any chance get ileus, it'll be ok. What they do is they give you a cup of water to sip on and as you sip on this cup of water they slowly put this tube down your nose and into your stomach. They will bring an xray machine to your room after to make sure that it's where it should be. If it's not, you'll eventually start throwing up again and it sucks throwing up while you have a tube in your throat. Theyll reposition it. And when it works you'll see yellowish green liquid bile going up and down this tube.
When its time to take it out they'll give you a cup of water to sip on and they just yank it out. It's a little like getting a catheter yanked out, it burns. But then you're fine. It's not a great experience and first time is scary, but I've had them 5 times during the two surgeries and after a couple it's like meh. My nurses told me it's the worst thing they have to do to people. It's a mental freak out for a lot of people, but so can getting blood taken. You just gotta be in the zone I guess and let go of everything and not think about it.
I would need to be put to sleep. There is no way I can endure a tube being put down my throat like that. OMG
Tylenol doesn't cause ileum right?
The advice I got from here before I went into surgery was to walk, and to minimise the meds. I felt quite sick when I woke up and was terrified of vomiting because I didn't want to rip any stitches etc. when I vomited it was green bile and it really hurt. They gave me anti nausea tablets and for the most part I managed without pain meds (I had a morphine demand pump attached but barely used it, I did however keep the oxygen mask on 24/7. Even when the nurse took it off me I put it back on again, I found it helped me sleep lol)
Anyway, as soon as I was able (day 2) I got up and started walking, in my hospital gown with a sick bowl for company. The nurses were begging me to take it easy, and I couldn't even stand straight and felt dizzy, but I did 20 laps of a 200m corridor, It really felt like a marathon tbh, I considered stopping so many times, but I was determined to hit 20 as my rough maths figured that was 2 miles... on the 19th lap I felt a huge kick on my stomach and a gurgling like a drain and I could feel my bowel wake up. I was discharged early on day 4, on the grounds I wasn't on meds, and wasn't following doctors instruction anyway, and of course was making good progress (eating, keeping food down, not vomiting and bowels were working). being the UK NHS they also kinda needed my bed lol
Having no energy and not being able to walk I'm afraid of doing that. Not sure about 2 miles. But I get why you did it and it seems to be a great way to help wake up your bowels. I honestly need to see what I can do. Even recovering from a flare and getting into remission it took me months to regain my energies. Sometimes I would sit on the floor folding laundry and I had to have someone help me get back up because I couldn't get up myself. That's how weak I was and I was already on remission. Recovering from a flare is never over night. I'll not only recover from my surgery next week but also from my flare. I'm getting more and more anxious and have "what if" scenarios playing in my head.
Andrina posted:I would need to be put to sleep. There is no way I can endure a tube being put down my throat like that. OMG
Tylenol doesn't cause ileum right?
Andrina,
I do not know if you are serious with this post but if you are, you are not really following this discussion. You cannot give general anesthesia to a patient who has intense nausea and is vomiting violently. You will insure the death of that patient who, if he or she is anesthesized, would likely choke to death on his or her own vomit as did the unfortunate Jimi Hendrix.
The NG Tube, if needed, will be inserted while you are conscious and after spraying your throat with a local anesthetic designed to eliminate the gag reflex (which it really doesn't.). It will be inserted forcibly if need be; it was in my case, although I did know it was needed.
Bobish posted:The advice I got from here before I went into surgery was to walk, and to minimise the meds. I
This is the key advice. Follow the advice and you minimize the risk of ileus and NG Tube. Do not follow the advice and you will maximize the risk of ileus and NG Tube. I used too much pain meds and learned the hard way. Sometimes learning the hard way is the best way, but in this case I do not recommend it!
Yes I'm serious. I never had an endoscope done while conscious either. Some people are afraid of needles I'm afraid of this. I rather not have it done because I will be panicking
Yes i'm following this discussion and I'm very anxious
CTBarrister posted:Bobish posted:The advice I got from here before I went into surgery was to walk, and to minimise the meds. I
This is the key advice. Follow the advice and you minimize the risk of ileus and NG Tube. Do not follow the advice and you will maximize the risk of ileus and NG Tube. I used too much pain meds and learned the hard way. Sometimes learning the hard way is the best way, but in this case I do not recommend it!
I will maybe walk but I'll need to sit down in between. That's just what I deal with.
Andrina posted:Yes I'm serious. I never had an endoscope done while conscious either.
It's not an endoscope. An NG Tube is not stuck down your throat to peek around. It is stuck down the nostrils and throats of intensely nauseous, vomiting patients to suck out of their bodies GALLONS of bile and gastric juices. It is not remotely feasible to sedate or administer anesthesia to such a patient. The best that will be done if this happens to you is that your throat will be sprayed with a topical anesthetic. Nothing will be done to sedate you, period.
The good news is that if you listen to the advice you are getting here and do not take pain meds like candy (a week's supply should be MORE than enough), and walk around, you probably will not have to deal with an ileus or NG Tube. If you do, it will not be pleasant, but you will survive it just as Aaron, Bobish and I all did.
Walking was not pleasant, my belly felt like a pitched tent, but I did what I could and was highly motivated to do so. Especially after the ileus.
By the way, patients who get anesthesia typically have empty stomachs and are not even allowed to drink water. In an ileus situation, your stomach is far from empty. It is swollen with bile and gastric juices that cannot go down and must go up. When they put the NG Tube down on me that tank that the vacuum was attached to filled with at least a gallon of green bile and gastric juices within an hour or two.
Just prior to my first surgery, I had a condition called Erythema Nodosum (sp ?) and was unable to walk into the hospital due to the severe pain in my legs. I couldn't even dress myself the morning of surgery. However, soon after surgery was completed, I was able to walk, and did so, with the assistance of a Physical Therapist as soon as possible. I know that walking really helped and I had no complications after any of my surgeries. It's not pleasant at first, but gets easier as you go along. I tend to not dwell on the 'what if's, and it seemed to work for me.
You're all really knowledgeable and I'm learning a lot from you and I'll continue to learn. Thank you for your patience with me and dealing with me. Yes I'm anxious and I hope certain situations don't even come up (tube ughh).
So will it be OK to rest the day of the surgery and try more (maybe stand up and walk a little) the next day? I do want to give myself some time to rest.
I would say that you most likely would start getting up around the second day. Usually, it's from the bed to a chair, then progressing to around your room and then to the hallway. They will be teaching you how to empty and measure the output from your bag relatively soon, which requires a walk to the bathroom. You'll have someone assisting you through all of this and will progress to longer walks as you are able. You'll do fine!
Andrina posted:I would need to be put to sleep. There is no way I can endure a tube being put down my throat like that. OMG
Tylenol doesn't cause ileum right?
If you ever have to have a NG tube. Swallow water while it's being done. I've had it done twice and did it with no problem it's not pleasant but that tube slid right down.
Richard
I don't know if they let anyone walk the first day. I don't even remember my first day after surgery. Just that it was 12 hours from the start of surgery until I got into my room. I had the two step which may be why it was longer. I really don't remember a lot of my time there. It was 9 days though.i remember throwing up for many days and then getting the ng tube and catheter put in a few times. And I couldn't eat anything or leave the bed for 4 days. And my roommate was having seizures and I had a dozen people in my room for days. Don't remember much more than that. I may have blocked it out because I have a good memory for most of everything else other than all my surgeries and hospitalizations.
Try not to let all of this worry you though. It likely won't happen to you. It happens but not too often. But if it does, someone will be there to hold your hand through it. I didn't think I would be able to do it either but I did okay. You will surprise yourself. Hey I am sure with everything you've been through so far due to UC that it's prepared you for something like this. We've all been to hell. Hell ain't finished with you yet, but after this surgery it won't wanna mess with you again. You're much stronger than you realize you are. You got this!
Andrina posted:Yes I'm serious. I never had an endoscope done while conscious either. Some people are afraid of needles I'm afraid of this. I rather not have it done because I will be panicking
Yes i'm following this discussion and I'm very anxious
Andrina, I'm with you; I've never had an endoscopy without sedation either and the insertion of the NG Tube, although brief, was a terrible experience; the worse part for me, was it being fed up my nose.
If the NG tube is needed, it's a judgement call by yourself, between the worse of two evils and once the vomiting starts, you'll be begging the Nurses and Doctors to give you something to make it stop and all that's on offer, will be the NG Tube.
The type of vomit is very different to the vomit we're all accustomed to; it's pure liquid and acidic, which may cause serious harm if accidently inhaled.
The NG Tube may not even be required, some patients experience the vomiting but dont require the NG Tube, other don't experience any vomiting at all.
During surgery to remove my bowel, whilst sedated, a NG Tube was inserted; and for 10 days after the surgery I wasn't even aware it was there, until it was time to be removed; and it was stuck to the end of my nose with pink surgical tape.
Andrina, as you're feeling apprehensive; why not ask your Surgical Team whether the NG Tube can be inserted whilsted you're sedated for surgery, but bear in mind, you may not actually need it.
In regard to mobility after surgery; I'm unsure as to what stages of recovery this refers to. When my bowel was removed, I had open surgery and an epidural, so it was a good 10 days before I was asked and encouraged to walk, then at least another 10 days before I felt well and fit enough to do so.
After my J pouch creation, (which was also open Surgery); after a stay in the High Dependancy Unit, it was also a good 10 days, maybe longer, before I was encouraged to walk; I still had the epidural, and my legs and abdomen were sprayed with an ice cold spray every so often, to ensure the epidural was still effective.
After my takedown, I was walking the moment I returned to the ward and ready to be discharged within 4 days.
It took maybe 4 months for the old stoma site to completely heal, which after takedown, was left as an open wound and covered with a surgical dressing.
Strange makes an interesting suggestion to get the NG tube inserted during surgery, "preemptively", but there is probably a good chance that Andrina will never need it if she does the right things. I really think my ileus was due to overusing the morphine pump. I did not walk until the second day after surgery, and when I did I was very limited and extremely uncomfortable. I probably could have done more walking than I did and that factored into my ileus as well. I had my 2 step surgery done in 1992 and it was not done laparscopically. When I got the ileus and the NG Tube had to be put down, I physically resisted (I was a 20-something knucklehead know-nothing at the time). As a result, I had to be restrained and overpowered, but the doctor who put it down on me was strong, ruthless, aggressive, efficient, and expert in his deployment of that tube, and he got it down on me so quickly and smoothly and with such military-like precision that it really surprised me. Once it was in and I was intubated for an hour, the intense nausea and projectile vomiting all over the room stopped, and I felt better. The doctors all told me that they were very worried that my sutures would rip open and I would get infected from the spasmodic heaves associated with the violent vomiting. Unfortunately an infection did happen to me as well, and my white blood cell count shot up astronomically! Anyway all of the above are reasons not to use a lot of pain meds and to try and walk as much as you can. It will not be easy, but you just have to do it.
After all of this I also experienced a low potassium count in my blood and they made me drink liquid potassium, which looks deep red like blood but is utterly vile in taste! Was served in a dixie cup so fortunately did not have to drink more than a few ounces of it.
mine couldn't have been from the pain pump because the pump fell off me before I could pump it once. It was pretty shoddy work. The second surgery I didn't even ask for one. I have a high high pain tolerance.a broken wrist didn't even bother me. It was like meh. Both my bowels and my bladder went to sleep which is unusual. Doctors didn't know why
Good luck on your surgery this week, Andrina! Speedy recovery! It has been 3 years Friday since my first surgery! Hard to believe where I was then and now!
Good luck Andrina.
How long after they get me into the recovery room will I wake up?
Also what should I do if I happen to be on my period when I have my surgery?
Don't remember how long I was in recovery when I woke up. Not sure about your other question.
Just saw this thread today! Hope your surgery goes well! I have had a j-pouch since 2003 and I have found that what helps me the most is the power of positive thinking. Your mind controls more than you think! Not having a colon changes a lot of things in your body and it helps to just try to always think positively no matter how you are feeling. I really struggled with mornings at first. Just never felt good. So I started getting up really early and running no matter how I felt! I am praying for you today! Please keep us posted!
Ok folks I woke up and my stoma is beautiful. Surgeon came after I woke up and said I look good.
I already have output. it's weird that I no longer have to run to the bathroom. I don't have a colon anymore. It's like kicking a bad tenant out haha
And they made me walk from the bed to the door. My rectum tube fell out when I turned in the bed so they decided that tonight I will not have the rectum tube.
Sounds like you are doing well. Keep it up.
Aimee
If you already have output that is a very positive step and means peristalsis is back. Very good news. Keep trying to walk around as much as you are able to and good luck.
All of this is great news! be careful and don't over do it though! Big changes going on in your body! I hated that damn rectal tube you are lucky yours fell out. lol
they tried to have me walk four times and I can't do it
I have a fever again
they put my rectum drain back in
Glad to hear you're doing ok. I don't remember the rectal drain, just the catheter and a drain on my left side, that hurt pretty badly when they took it out. I had this type of drain for the first and second surgery. Walk when you can and rest as well.
