Surgery July 5th

[akduck]

I had a bowel obstruction on April 10th and it caused an abscess. The CT scan showed what appeared to be Crohn's at the terminal ilium. The surgeon at the local hospital thought there was a chance of having the abscess drained at UW in WA, and he did not want to operate, so I was medivaced to Seattle. I spent a total of 8 days in hospitals. The docs at UW determined they could not get a drain in, and they didn't want to operate, so they sent me home on another 8 days of antibiotics and Prednisone, hoping that the abscess would "re absorb".

I saw a GI doc on May 8 / 9, and had a colonoscopy. There were 3 ulcers that were determined to be mild Crohn's. The GI doc said he wanted to wait another month to do another scan to see what the abscess was doing. Had the scan on June 6th, and the abscess is getting bigger! The GI called and said I have to have surgery now!

I saw the surgeon yesterday - 12th. He put me back on antibiotics - Cipro and Flagyl, which I will take until the surgery, and I have to be off the Prednisone before the surgery - it's July 5th. I was on 20 mg of Pred, today went to 15, and will do a quick taper. I know that is going to be tough.

I really liked the surgeon, and feel comfortable with him. He said what he's sees on the scan is a bit of a mess with bowel loops and matting, but is hoping to do a resection and remove the abscess. He did say that once he sees what is there it may be more than that, including a temporary ostomy. It cannot be done laproscopicly.

The surgeon also said he did not understand the thinking of the UW docs to leave me on Prednisone and take me off the antibiotics. The GI doc didn't mention this.

I have had occasional bouts of several days of bad D over the last 5 years, some pain, but not close to what I am reading about some of you on here! I was first diagnosed with IBS, then lactose intolerant. I had diverticulitis in March, and the scan that was done then showed the possibility of Crohn's. The day before the bowel obstruction I felt better than I had in weeks, finally getting over the diverticulitis.

This has all happened so fast that I am in a bit of a fog. I had three different docs tell when they saw me that I LOOK so healthy that it surprised them, because I was such a mess or sick looking on the inside!

I am ok with the surgery, no matter how it turns out. I don't want to wait until it is an emergency situation. I feel pretty good most of the time. I am on a low res / low fiber diet and have pretty normal bms.

I would like to know if there is anything any of you did to prepare before surgery to help make your recovery go easier?

 

[deb123]

Hi AKDuck,

Glad to hear your surgery is soon, the worst thing in my opinion is to have to face surgery when you are physically, and mentally worn down by this disease.

When my surgery was due i almost built up to it like a marathon. I would go for long walks to get my heart pumping and really work out my lungs and muscles. I think if you prepare yourself physically and mentally then you will be in the best shape to deal with your op.

Good luck,

Sending best wishes to you,

Deb.

 

[akduck]

Thanks, Deb. That sounds like a good plan, and I can get in some walking without any problem. I am taking vitamins, and a few supplements, and thinking about doing some juicing - the low res / low fiber diet is working as far as keeping me regular with no D, but I ate a lot of fruit and veggies before and this diet just doesn't seem very healthy to me!
I also wish I had a little more time to get off the Prednisone. The GI had me dropping 10 mg a week, and when I hit 10mg, I had a hard time and he put me back to 20 mg. Now I am at 15 and will drop by 2.5 mg every 3-4 days.
I feel good most of the time, but know how fast that can change!

Did your recovery go well? Was it easier than you expected? The surgery will be 150 miles from home, and the doc says he will want me there for another week or so after I get out of the hospital, and I know that I will just want to be home.
Thanks again - Marlie

 

[deb123]

Hi Marlie,

My surgery was tough, they warned be that i would probably awake in intensive care. Lucky for me i didnt, but my recovery was slow, as i was on a morphine on demand contraption, which made me really sick and disorientated, it also slowed my bowels down, and they wouldnt let me eat or drink until i opened my bowels. I was in for about 10 days which feels like a life time in NHS hospital!!
Dont be surprised if you find it quite a tough recovery process. The best advice to you would be to expect recovery in stages. Even when you get out of hospital it takes a while to feel normal again. I actually thought they had left an operating instrument, or tool bag inside me as i could feel lots of hard lumps!!
Aparently it takes a little while for your bowel to find its place again, once they have had a good rummage it takes a while for your bowel to find its natural place again.

Good luck with everything, stay strong, and let us know how you get on.
Deb.

 

[PsychoJane]

Hi Marlie,
As Deb said, better take the recovery by stages. Do you know if you will get your intervention done with an epidural? I have never had it that way as the anaesthetist considered it too risky because of my past (vascular issues and various weird reactions to med and what not). I have been told the "reawakening" is easier when it's performed that way as you don't feel as much pain since it's constantly controlled.

The surgery I had last month was performed under traditional general aneasthesia and I had a PCA (patient controlled analgesia) to control the pain when I woke up. It's morphine sulfate, I'm guessing is the same thing that DEB had. It is indeed frequent that patient don't tolerate it well. For me, that drug is ok as long as I give myself a lot of it... when I go on lower dosage, I felt really sick (both nausea and headache). If that is the type of analgesic that you will get, keep in mind you can ask to be flushed with an antiemetic drugs (gravol-zofran-etc) to not feel so yucky every 4-6 hours or so. It's also good to take in consideration that it may be the reason why you feel so crappy as I thought that It was the food (when I started drinking/eating) that was making me sick and not the morphine at first.

I think that your idea of juicing is great. You really want to get your body the best it can get to heal after your surgery. I think I personally fell in the trap of being so used to have issues with the quantity of food I would eat that I somewhat continued not eating much after surgery and probably I have not eaten enough. Consequently, my wound went well for a while and it got sour after. It's a long story but I think that It would have been easier if I had been warned that I needed more protein. Well, I was warned about it... but no one gave me numbers. You will be looking at somewhere between 1,5g-2g of protein per Kg of body mass (.7-.9g/lb). So it's pretty much the double intake in protein that you would normally take. So for a person of 120pounds it would represent a need of taking let say: 80-110g of protein a day... that's roughly available in 1 pound of meat/fish - 12 eggs (ok I don't suggest eating 12 eggs a day) - 2,4 L of milk - etc... My point is, it may worth investing in some protein powder for the few weeks post op to bump up that protein intake.

You also want to increase your intake of : vitamin A-C-E, Zinc, Iron and I've been told that a supplement of L-Arginine might be a good idea as well.

 

[akduck]

Deb - sorry to hear your recovery was so tough! My surgeon told me to expect to be in the hospital for 4 -6 days, pending no complications. I will have an epidural in, and it sounds like that may help with both pain and recovery! I have a very high pain tolerance, which has got me in trouble a few times, but I am hoping it will be a benefit after the surgery. The doc did say that about the bowel taking some time to get back to business after a surgery. I hope you are doing well now.

PsychoJane (I love the name!) At a month out of surgery do you feel that you are on target with your recovery? I was told that I should (pending complications) be feeling ok after about 2 weeks, and good in about 4 - 6 weeks.

I also am thinking to get in as good as shape as I can before the surgery! I am glad I feel well enough to make a good effort. This low res/ low fiber diet keeps me from being hungry, and having D, but it's not so nutritional! I dug the juicer out today and will shop for a few fruits and veggies after work tomorrow - I am going to start slow and see how it goes.

I really appreciate the info about the protein after surgery! I will make sure to get some shakes or powder to supplement that. And I am already taking some extra of vitamins, but not iron - I have always had borderline high iron, and never taken supplements. My doctor told me never to take a multi vitamin with iron in it unless the blood work changes! I also take L - Arginine, as I am lactose intolerant and had issues with blood vessel spasms. This was prescribed by a cardiologist.

I have a wonderful daughter in law who will be staying with me and helping me after my surgery. She has an aunt who has had Crohn's since she was a young girl, and my DIL has cared for her after surgery, so I feel I will be in good hands when I get home!

Thank you both so much for sharing, the good wishes and the advice. It is really helpful. I feel so fortunate that I found this forum so soon after I was diagnosed!

I will keep you posted on how it goes. Marlie

 

[PsychoJane]

PsychoJane (I love the name!) At a month out of surgery do you feel that you are on target with your recovery? I was told that I should (pending complications) be feeling ok after about 2 weeks, and good in about 4 - 6 weeks.

For me it was a second surgery. It was done in the same site the first was so because of that aspect I think it was less painful because the scar was somewhat desensitized by the first intervention. I was feeling really good after 2 weeks... even after a few days actually. I could not move with all the ease in the world but on the overall, it went quite well. I am now dealing with complications caused by:1) maybe not eating enough protein, 2) getting my wound colonized during (or not) dressing changes, 3) the simple fact of having Crohn. My surgeon said it is quite common that the wound does not heal as intended. I hope this won't be your case but it's always good to at the least know it may happens... Mine only told me after, when it happened, that many of us do have issues at healing wounds. That being said, I'm what... going on 6weeks post up and my wound is not healed. I don't feel sick though. I don't hurt much... it's just really annoying as I have hard time doing simple thing like sitting in a car, getting up from a couch/bed and that I can't do simple thing like taking a shower lol. Anyway, eat well, sleep well, don't move too much in the beginning and you should be fine and feel fine withing the first few weeks!

How long are you supposed to stay at the hospital? By the way, bring some snacks at the hospital as the food is in general not so great and it makes it even harder to feed in these conditions !

 

[akduck]

Wow, I am sorry to hear you are having a bad time with the wound healing. I suppose that with this being a second surgery in such a short time for you, that alone could be considered a complication to the second surgery. I just hope that I am not being to optimistic about recovery.
The doc said about 5 days in the hospital, and I hope that is how it goes. But he also said that was pending any complications. The hospital is 170 miles from where I live, so he wants me to stay in that area for a week after my surgery. Depending on how I am feeling, I am thinking I may try to renegotiate that I can go home and come back in a week, but I will do what he thinks best.

I like the idea of taking some snacks to the hospital! I am asking around about some protein drinks. The ones they gave me when I was in the hospital in April were awful and I didn't drink much of them. I hope to find something that tastes a little better!

I work for a company that does fishing trips, and the guides are bringing me lots of salmon, so I am eating that several times a week and stocking the freezer for later - good protein there!

I wish you well with your recovery, and that things start getting better soon for you.

 

[PsychoJane]

Thanks for the wishes Just to add on the second surgery part... first one was in 99 thankfully but still. Once the skin is cut, the regeneration can't be perfect so it gets a bit trickier the next time but I'll get there, slowly but certainly!

Normally, you should be feeling decent at day 5. I understand his idea of staying somewhere around for the following weeks. Normally, if you are to have a wound infection/inflammation, it should happen within that time frame so you could mostly head home worry free after that.

For what it is of the proteins. I get mine from Natural grocery cause I prefer vege protein rather than the whey protein. It's only a matter of preference. I find it better than boost drink and what not. I like the pumpkin seed protein I can mix it to soup and you don't taste it!

 

[spcwife23]

,Hi akduck, I have been following your post, but I just finally remembered my passcode to get on site.. I just went through a surgery 5 th of June, i had 14 inches of my small bowel cut because i had a obstruction like you have..

I will say this Is painful but once you see you can eat without crohns pain it is worth it so much.. soon as you can start chewing gum.....soon as I could i chewed 2 pieces of gum and by the second gum my tummy woke up growling loud... And even tho the nurses will tell you eat what ever you want please take it easy.. I'm 11 days out of surgery and the healing is going well but everyday the pain gets better and you will have to remind your self this..

 

[akduck]

Hi spcwife23 - Glad to hear you are feeling better ! Did you have the surgery right after the obstruction? Did you have an abscess? Did you have an epidural for pain after the surgery? And finally, did you have a compression garment? Hope you don't mind the questions.

Thanks for the advice about the gum. Did the doc tell you to do that? I would have thought that you would want to rest your bowel for longer after surgery. There is just so much to learn about all of this!

I will take it easy on what I eat, no matter what they say... I have been on a low fiber / low res diet for over 2 months now, and I chew my food to mush and take a sip of water between every two bites! I am a little paranoid about having another obstruction!

Your baby is adorable!
Marlie

 

[skippy111]

I agree with PsychoJane on the vitamins,

be careful with the iron tho, you dont want to take Iron and Vitamin E together,
make sure you get your pottassium too,

Your Surgeon should be the one you talk to as far as what will be done.
He is the one doing it so he should tell you what he will be doing.

Most likely they will do an Upper GI the day before the surgery so the Dr's have fresh images to go by in the OR,

I had an Illiostomy/collostomy done in april,
I was on 60 mg prednizone, cypro/flagyl zofran, protonix, my pain meds,
then add to that my psych meds, celexa kolonopin and I was supposed to be taking adderall but they had me on ritalin... Bad Bad Bad experience with the ritalin.

Surgery was rough I was told, when they woke me up in recovery i was told to sit up because i had mucus in my stomach and fluid in my lungs, and that they had problems waking me up....

they moved me to PACU, (it is not ICU but a step down from it)
I was there for a day, then was moved to my other room.

Id say three days after the surgery they had me sitting up and walking a bit.
my bag didnt start working for a few days,

The bag for me is a liberating experience. Ive been told that it may be permanant but after 20 years of the inconvience of sitting on the toliet now I have a bag, I empty it when it is about full, change it when needed, etc...

I am not giving my bag up, it is so convienient, nobody knows i have it unless i tell them,

It gives me the freedom to go places and not worry about bathroom runs, etc

Recovery will all depend on you, some people are up and walking around within 3 days, then others maybe longer, it depends on the surgery,

I dont know why they told you to stop the cypro and flagyl, those are antibiotics that will help get rid of bacteria...

 

[spcwife23]

Hi akduck, I know Its a very scary thing to go through but if your prepared on what to do on different situations it helps a lot...
First off I went Into the hospital a month before my surgery and they told me i had a partial obstruction, they put me on soups for a month which let me tell you helped in the long run, i had no ng tube or any other equipment, other than the thing to make you pee...

I didn't have any epidural because mines was gonna be laprascopic so they just put me under heavy sadation.. I had narrowing in my small bowels and as they started going in they found i had 4 hernias that were all in the same area so I had to get open surgery for them to take It out.. the good thing about the open surgery to me is they will not miss anything unless your surgeon is blind. So make sure your ready to wake up with a cut under your belly button. Sometimes they will tell you Theres a chance the open cut will happen. Just know sometimes it is best for them if they have to cut to get every disease part out .

As for the compression garment I'm female so my mom gave me a girdle that is tight as hell to use, I even used it after I had my son with a c-section. I'm not sure if your peoples will give you one but if they dont have your own, if your female its easy for u to get a girdle but I'm not sure what men use..

Ok and lastly the only way your getting out that hospital your intestines has to be awake, I was in the icu for 4days, the 5th day went to a regular room and got so sick of being there so I remembered that smelling food, or eating gum helps wake up your intestine, so the second piece I chewed that day woke my tummy up and I was sent home the next day after eating ...

 

[akduck]

Skippy111 - Thanks for sharing. Sorry your surgery / recovery was rough, but I am glad to hear that you are happy with the outcome and having the bag. I can understand that it is better than having to be constantly near a bathroom or worrying about not getting to one in time!

My Crohn's is mild and I have had bouts of several days of D over the last 5 years, but I know for me it's not been as bad as so many people I have read about on the forum. If it wasn't for the abscess caused by the obstruction, I wouldn't be having this surgery.

I haven't had to take any pain meds since the 3rd day in hospital when I had the obstruction. I am just taking the antibiotics, omeprazole, vitamins and probiotics and am at 12.5 mg of prednisone and tapering off that from 40 mg when I got out of the hospital.

I don't have to worry about any issues with Vitamin E and iron. I have always had to much iron, so never take any vitamins with it in them.


I am sorry you had the bad experience with getting the ritalin instead of adderall. It's hard enough to deal with everything you have going on and then getting meds mixed up! Wow.

The surgeon did tell me what he is planning on doing. He spent over an hour with me talking about it and answering my questions. I was told that my pre op tests will include a chest xray, EKG and blood tests, but no mention of an upper GI.

 

[akduck]

Hi spcwife23 - I know that I am going to have an open surgery... was hoping for laproscopic but the surgeon said it isn't possible to get the abscess that way. I will keep the girdle in mind if they don't give me a compression garment! (I am female).

I also was told that I will have a catheter for peeing, but I don't recall anything about an ng tube, so hopefully won't have that too.

Just being on here, and hearing from all of you about your experiences and the things that you have done, what worked and what didn't, is really helping me at least mentally prepare! I really appreciate it.