Surgery scheduled in 2 weeks!

[Jessy]

I met with my surgeon today and we have decided to go ahead with the surgery in 2 weeks. She will be doing it with one of her partners that studied at the Cleveland Clinic and who is well versed in Crohn's Disease. The surgery will be a resection of the TI and a strictureplasty in 2 areas. It will be open because she does not feel she can safely reach the strictures laproscopically. I am currently down to 20mg prednisone and she would like me to get down to at least 15mg (this has been tough - every time I taper I feel horrid for a few days, but I am determined). I will need to be back on prednisone for a bit following surgery since I have been on it for over a month now.

My nutrition levels are still not where we want them to be (Albumin is 2.6), but I am getting TPN 12 hours/day and trying to eat as much as possible - - the TPN is making me fat but my surgeon said that is a good thing :/ (I have literally gone from 112 pounds to 128 in like 3 weeks - I know I needed to gain some weight, but geesh).

Any tips? Did you guys lose weigh following the surgery, is that why my surgeon wants me to bulk up? What are your thoughts on me being on 15mg pred for the surgery? Any advice is greatly appreciated. This is my first surgery ever and I am very nervous!

 

[valleysangel92]

Im glad you've got a date so you can prepare a bit.

It is important to have the best vitamin levels possible before surgery because they drop a little post op in some people.

Sometimes you don't have a great appetite after surgery, I hardly ate the whole time I was in hospital, so it never hurts to have a little bit more weight than you need.

There is also the theory that if you have a good store of carbs it reduces the chance of post op insulin resistance and speeds up recovery. For the two days before surgery I had to drink 3 bottles of ensure a day and then when I was admitted to hospital I had 4 cartons of a drink called nutricia preop then 2 a couple of hours before surgery. I can't tell you if it helped recovery since it was my first operation but it certainly didn't do any harm.

The lower you can get the pred the better. my surgeon told me they ask you to taper because it lowers the risk of bleeding. Don't let it worry you though, my sisters both have blood that doesn't clot and are always fine during surgery. Your doctors will know your medications and will have planned for it so you'll be fine .

It is very natural to be so nervous, any operation is a big thing, but remember you are in safe hands and we are all here to support you.

Make sure you get decent pain relief as this is important for recovery, when you're allowed to eat, start slowly with soft foods and small amounts. When you feel up to it, start walking about a little, take it slowly and at your own pace. I found that the first day of doing it was the worst .. but within two days it was so much better I was allowed up and down stairs. Remember that everyone is different and it's ok to ask for more help if you need it.
Get plenty of rest and let others make a fuss of you .

If you like you can PM me anytime for a chat.

Good luck. Let us know how everything goes

 

[Jessy]

Thank you Valleysangel! How long were you in the hospital following surgery? My surgeon said to prepare for 10 days, but that it very well may be less. She also told me not to plan on going back to work until Christmas (although again said that is could be earlier)! Did you have your surgery done laproscopically? I am concerned about the scar, but that is just the vain part of me. She said she would try her best to keep it as small as possible.

We also discussed pain relief. I am a little concerned about this because I have been taking pain medication pretty much daily for the past month and have probably built up at least some of a tolerance. Did you have an epidural or pain pump? She said I would have a pain pump to control my own pain relief for the first few days. Honestly, I have been in so much pain from the Crohn's I would not be surprised if I woke up from surgery and felt better than I did going in.

I am going to continue to try to wean off the pred and get down as low as possible for surgery. Today was a bad morning because of the taper - I had a ton of stomach pain that was not responding to pain medication and a lot of D, joint pain, and aches. This has gotten better as the day progressed and I took more pain meds (Can't wait to get off these meds - it feels likes I'm so reliant on them!).

Thank you again for your support and advice. I will let you know if I have any other questions!!

 

[Crohn's gal since 1989]

I met with my surgeon today and we have decided to go ahead with the surgery in 2 weeks. She will be doing it with one of her partners that studied at the Cleveland Clinic and who is well versed in Crohn's Disease. The surgery will be a resection of the TI and a strictureplasty in 2 areas. It will be open because she does not feel she can safely reach the strictures laproscopically. I am currently down to 20mg prednisone and she would like me to get down to at least 15mg (this has been tough - every time I taper I feel horrid for a few days, but I am determined). I will need to be back on prednisone for a bit following surgery since I have been on it for over a month

How fast are you tapering? Are you dropping by 5mg/week 1 pill)? When I got to 2 pills my GI slowed my taper further so I went weekly 8 pills, 7, 6, 5, 4, 3, 2, 1.5, 1, .5 and finally .5 every other day.

I found the full pill taper a lot harder to adjust to. This last week of dropping just .5 of a pill really caused me no significant negative symptoms.

I'm currently on .5 so next week is my last week of Prednisone!!!

 

[valleysangel92]

I had surgery on the Tuesday, went home the Saturday . I had key hole surgery, I understand the scar concern but it will be very neat and there's all sorts they can do to minimize them.

I had also been on long term pain meds before the operation. I had a PCA pump. I also had paracetamol available as a boost if I needed it.

Tapering pred is never fun, took me ages to get off it. Just get it as low as you can without putting yourself in too much discomfort.

 

[Jessy]

@Crohn's gal - I am tapering a little faster than that because of the upcoming surgery - 5mg every 5 days. I get increased stomach pain and extreme achiness about a day after a 5mg taper, but have just been increasing my pain meds to accommodate. Congratulations on almost being off - it is such a frustrating medication! I still have a fat face, acne, and water retention in my stomach area - can't wait until that goes away.

@Valleysangel - Are you still taking pain medication or were you able to taper off the pain medication pretty easily following surgery? Paracetamol is like Tylenol?

 

[Jessy]

@Crohn's gal - I am tapering a little faster than that because of the upcoming surgery - 5mg every 5 days. I get increased stomach pain and extreme achiness about a day after a 5mg taper, but have just been increasing my pain meds to accommodate. Congratulations on almost being off - it is such a frustrating medication! I still have a fat face, acne, and water retention in my stomach area - can't wait until that goes away.

@Valleysangel - Are you still taking pain medication or were you able to taper off the pain medication pretty easily following surgery? Paracetamol is like Tylenol?

 

[valleysangel92]

I sometimes take paracetamol still. Nothing stronger though... I'm not sure what Tylenol is we don't use it in the UK, just know it's a painkiller. I imagine it's a similar sort of thing.

 

[Trish22]

Tylenol I think is a kind of Paracetomol.

 

[Melly92]

Hi Jessy,
Your lucky you could have made the decision prior and pre book it in and prepare yourself.

4 weeks ago I had a ileoceal resection. I had 19cm removed and it was done open just as hours will be. Do join know how much they are going to have to remove?

As for the pred I don't think you should worry to much. As before the surgery I was in hospital for 5 day prior and was receiving 40 mg twice per day and was only tapered off after surgery.

I had my surgery on a monday and got to go home on the Saturday. And 4 weeks on I am back at work. So fingers crossed you will also have a speedy revocery.

Good luck with your surgery and if you have any questions please don't hesitate to ask

 

[Jessy]

Yeah, I think both Paracetomol and Tylenol are acetaminophen. It would be GREAT if that controlled my pain. As I stand right now, acetaminophen does nothing for my Crohn's pain, but I love it for mild aches and pains.

Just got a call from my surgeon and I am penciled in for September 10th now. I am currently scheduled at a hospital that is a little further from home than we wanted. I was anticipating having the surgery at the hospital that I have been admitted to numerous times this summer - which is preferred since I am more familiar with that hospital, is the hospital my GI works out of so he could visit me while I'm there, and I am more familiar with the staff. We are working on getting the location changed, but I don't want it to push back the surgery by too much, so I may just end up getting it done at this other hospital (which is actually a great hospital, but still prefer the other).

Melly - Yes, I am thankful I have been able to prepare for the surgery. The TPN and pain management has made it possible to prep at home and be with my family. It has been tough sitting around doing basically nothing for the past month, but I try to keep reminding myself that I am VERY BUSY preparing my body for surgery. Was your surgery done emergently? They are estimating 12 inches will need to be removed, although my surgeon says that she is overestimating. Unfortunately a lot of the inflammation is patchy - so some good tissue will be removed along with the bad. Your recovery sounds ideal! I can't believe your back to work after 4 weeks, I would be so pumped if I could return that fast! How are you feeling? What is your eating like now?

My job is actually kind of ideal for situations like this, as I can make my own schedule. I will probably go back to work part-time for the first month and then take on more work as long as that goes ok. I am so ready for a second child as well, and hope to get started on that as soon as I get my DR's ok.

 

[Jessy]

Another question: Did you guys have to do a bowel prep for the surgery at all? My surgeon is not having me prep at all because she thinks it will cause too much pain for me. I think I am just going to stop eating solids about 3 days prior to make sure I am mostly cleaned out (I will still be getting the TPN though).

 

[tsm1110]

Hi Jessy,
I had a resection of the TI in April and i did do a bowel prep.I think if you do a bowel prep you have a better chance for not getting an infection.This was my first surgery also.I was having pain every few weeks and made the decision the talk to a surgeon.I think you are making a good decision also because i would think if the surgery was done as an emergency surgery the recovery time could be longer.Plus you have time like i did to research it and better prepare yourself.Mine was done laproscopically.I weighed 170lbs before surgery and i was down to 158 a few weeks after but have gained my weight back to 175lbs.Im sure if your surgeon doesnt want you to do the bowel prep she has good reason.I wish you the best.

 

[valleysangel92]

Another question: Did you guys have to do a bowel prep for the surgery at all? My surgeon is not having me prep at all because she thinks it will cause too much pain for me. I think I am just going to stop eating solids about 3 days prior to make sure I am mostly cleaned out (I will still be getting the TPN though).

I had a lower fibre diet for 5 days then had 2 enemas in the hospital, it kept me up most of the night since I didn't have the first till 10pm and then I had agonizing cramps, then had the next at 5.30 am.

I know of others that have had similar operations and didn't have any prep at all, just ate less fibre. It is honestly just down to the preferences of the individual doctor and the specific needs of the patient. Your surgeon wouldn't allow you not to do prep if she wasn't confident operating without it.

 

[JustAYoungLad]

I'm in the same boat as you Jessy. I'm currently in hospital and going to start TPN in the next day or two and I will be having surgery in a few weeks. I don't know exactly what I'll be having but I've been told that they will remove a section of scar tissue, rejoin the bowel and then examin other small sections that may need to be stretched. Apparently the section being removed is between 10 and 15 centimetres. It's all scary being my first time under the knife. Just wanting it all over. I imagine you do too. Best of luck with it!

 

[Melly92]

Yeah, I think both Paracetomol and Tylenol are acetaminophen. It would be GREAT if that controlled my pain. As I stand right now, acetaminophen does nothing for my Crohn's pain, but I love it for mild aches and pains.

Just got a call from my surgeon and I am penciled in for September 10th now. I am currently scheduled at a hospital that is a little further from home than we wanted. I was anticipating having the surgery at the hospital that I have been admitted to numerous times this summer - which is preferred since I am more familiar with that hospital, is the hospital my GI works out of so he could visit me while I'm there, and I am more familiar with the staff. We are working on getting the location changed, but I don't want it to push back the surgery by too much, so I may just end up getting it done at this other hospital (which is actually a great hospital, but still prefer the other).

Melly - Yes, I am thankful I have been able to prepare for the surgery. The TPN and pain management has made it possible to prep at home and be with my family. It has been tough sitting around doing basically nothing for the past month, but I try to keep reminding myself that I am VERY BUSY preparing my body for surgery. Was your surgery done emergently? They are estimating 12 inches will need to be removed, although my surgeon says that she is overestimating. Unfortunately a lot of the inflammation is patchy - so some good tissue will be removed along with the bad. Your recovery sounds ideal! I can't believe your back to work after 4 weeks, I would be so pumped if I could return that fast! How are you feeling? What is your eating like now?

My job is actually kind of ideal for situations like this, as I can make my own schedule. I will probably go back to work part-time for the first month and then take on more work as long as that goes ok. I am so ready for a second child as well, and hope to get started on that as soon as I get my DR's ok.

Yes my surgery was done emergency which normally would cause a longer recovery time but I think I was lucky. Eating is fine now, for the first week I had pretty much no appetite but that has certainly changed now. I am feeling good still a little tender on the cut but its not bad enough to need any pain relief. I only work part time but its still a big step to start back after so long off. That's no good that your inflammation is patchy! Although I had some healthy tissue removed as well to ensure it was all complete gone.
Also I didn't have any bowel prep.
A good tip, take chewing gum to the hospital it helps get the bowels working again after surgery.

 

[Jessy]

Thanks for the additional input guys!

JustAYoungLad - It does sound like we're in the same boat! Will you be able to leave the hospital and await surgery from home once your TPN is started? I was able to go home after getting the TPN started and my surgeon has been controlling my pain with stronger pain medications. The TPN has also enabled me to gain some needed weight. Are you in much pain right now? I will be thinking about you! Good luck in your upcoming surgery, keep us updated!!