# Path towards Surgery



## vanilla_chai (Jan 26, 2012)

I really appreciate being able to read others' stories so I figure I'll put mine down in case it helps someone else.  If this would be better in a different section, feel free to move it

so... After ending up in the hospital with at least a partial blockage (they did the first CT wo contrast bc they thought it was kidney stones) my GI suggested 2 options, 
1) give a double dose of Remicade and see how I feel after 4 or 5 months and if it doesn't get better, consider surgery
or 
2) just consider surgery.  

Because I've had blockage pains for years and they're getting worse (not every time is a bad one, but the bad ones are getting worse) and because they more often than not appear when I think I'm feeling fine, I decided to just see where things stand in regards to surgery.  

The first step was an MRE - basically an MRI w contrast.  I was glad it wasn't another CT, 4 is enough for now...  Anyway, I got there an hour before the test and had to drink 3 of those barium sulfate contrast solutions.  They gave me a bottle and said to drink it over 20 min.  I never think they taste that bad, but I did get really cold and was shivering quite a bit even with my coat - probably bc I was in a basement and they chilled them to make them more palatable.  

Anyway, after I got 2.5 of the bottles down, they had me change into the gown and set up an IV.  Once the lady before me was done, they took me in, put ear plugs in and had me down the last of the contrast. Then they had me climb on the slat belly down.  Yes, I had to lay on my belly.  Isn't this a crohn's specific test?  My gut isn't that sore right now, but there have certainly been many times where I wouldn't have been able to stand that...
Then she strapped on a black plastic strap that would monitor my breathing and put a plastic flat piece over my back.  My arms were over my head "like superman" and she hooked up the IV but didn't start the IV contrast yet.

After I was all setup the tech went to her booth and got started.  The test was similar to the CT, only louder.  It was lots of holding my breath and then pauses, I guess while she looked at the pictures she'd taken.  After a while (I'm going to guess 20 min) she said she was going to start the IV contrast.  It was similar to the CT IV contrast (for all I know it could be the same...) and did a few more holding breath pics.  

Then she unhooked me and I was able to go back and change while they burned a CD for me of the images.  The rest of the day I was dealing with the after affects of the contrast.  For anyone who hasn't had the pleasure of taking oral contrast, basically I went from being really constipated (I'll go 10 days if I'm not careful) to needing to go every few hours.  The effects lasted a full 24 hrs this time, a bit different from my CT 2 yrs before but I'm not sure if that was bc it was different contrast or if it was just because my body is in different shape now.

now I wait.  I *HATE* waiting, I hate the unknown.  From what I understand, the next step will depend on what he sees on the images.  If it looks pretty certain that it is strictured I think I go talk to the surgeon again, if its unclear, then a pill cam and possibly another colonoscopy.

that's where I am now, I'm trying to prepare myself to expect to not hear till next Friday.  I have no idea when I'll hear but I'm hoping to set it out of my mind

so, that's it for now, I'll try to update when I know more


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## vanilla_chai (Jan 27, 2012)

Well, this was a shorter path than I expected.  The nurse called today and said the MRE showed some inflammation but no scarring.  I'm simultaneously glad I don't have to have surgery and yet scared that I'll keep feeling crummy.  Hopefully there will be more answers when I see him in 3 weeks


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## vanilla_chai (Apr 13, 2012)

Well, so it turns out I am headed towards surgery.  When I saw the Dr, he said that while the scan didn't show narrowing, it wasn't totally clear, and that the Radiologist was hedging a bit in the report.  Because I'm looking to get pregnant he had me do a pill cam to confirm I wasn't too narrow and there wasn't visible active disease.  As it turns out, I am narrowed enough that the pill didn't pass though.  He said he had loads of pics of the camera running into the narrow section and that it doesn't appear to be inflammation so now I'm waiting for the surgeon's office to call to schedule an apt

anyway, just figured I'd finish the story since I started this post


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## KazT17 (Apr 14, 2012)

Hi Vanilla_Chai,

Just lost my first message to you (sorry if it reappears lol).

It sounds like you had an idea surgery was on the cards. Have you had any surgery before? Is the pill cam still in there?

It may give you relief from the pain you are getting and stop things getting worse.

I hope you hear soon, let us know what the surgeon says.

Love Kaz xxx


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## vanilla_chai (Apr 14, 2012)

Yeah, I went into this to rule out surgery so now I have an answer and the GI sounded like it was very clear and was not hesitating at all so that is good and very unlike what I usually hear, apparently my body is just abnormal  

From talking to the Dr, it sounds like the reason it wasn't obvious on the MRE is that they didn't see any expanding of the tissue in the area prior to the section that never fully expanded

the MRE report specifically says: 





> The study demonstrates persistent thickening and mild abnormal enhancement of the distal ileum/terminal ileum.  There is no evidence of obstruction or proximal small bowel dialation/distention.  However, throughout the evaluation, the lumen of the distal terminal ileum never fully extends; and I cannot exclude the possibility of subtle stricture involving the terminal ileum immediately proximal to the ileocecal junction spanning a length of about 1.5cm to 2cm


how frustrating will it be if all this problem is caused by 2cm?!?

and, yeah the pill cam is still in there, quite lovely, huh?  Its weird, but my symptoms seem to be much more volatile, very much in the spectrum of normal for me but before they would crescendo, even the blockages which were a quick progression were still a progression.  Now I'll be feeling great and then out of the blue feel horrible, or be feeling horrible and then like that I feel great again.  I'm picturing that its the pill relocating and some positions feel better than other, but that's a totally guess 

this will be my first surgery, crohn's or otherwise, unless you count getting my wisdom teeth out 

I look forward to getting more info from the surgeon
I *do not* look forward to telling my boss I need to take off / work from home for 6-8 weeks...


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## handle (Apr 14, 2012)

Hi,
  With such a short stricture, and some doubt as to it's nature, perhaps a balloon dilation would be advisable.
all the best.


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## vanilla_chai (Apr 14, 2012)

thanks for the suggestion, I'll be interested in what the surgeon says, esp about what he plans on doing.  When he met with me a few months ago he was talking re-sectioning but that was prior to the MRE and just based on symptoms.  
I'm not sure there's much doubt as to it being scar tissue, the GI said you can never know for sure till its out and sent to path but visually there did not appear to be any inflammation and my sed and crp have been low for a year and a half

Either way, I feel pretty good with the GI group I'm with, my GI specializes in IBD and the surgeon I'm seeing is the one that works with the IBD group.


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## Heather_D (Apr 14, 2012)

Hi Vanilla_Chai.  I'm surprised they didn't have to do an emergency surgery when the pill cam got stuck.  I was going to have one in September, but after an upper GI and small bowel contrast they decided against it because my Dr was pretty confident it would get stuck.  I have had the contract with a CT and MRI as well.  I also had to lay on my stomach for the MRI...I couldn't believe that as well.  I had the MRI while I was in the hospital and I had been put on a clear liquid diet (admitted for severe pain, vomiting, nausea etc...).  If they had tried to do it a day earlier though there is no way I could have laid there for 30 minutes or so on my stomach.

I had surgery on March 22 (little over 3 weeks ago now) and I'm going back to work on Monday (I have a desk job though so there is no lifting or anything).  Will they be doing your surgery laparoscopically?  I was told I could be out for 4 - 6 weeks, but I've been doing really well; my husband and I are moving to a house and I even helped today (we live in a 3rd floor condo with no elevator)!  I’m a little sore, but not in my abdomen, in my legs since I haven’t done a lot of physical activity in a while.  I had a lot of issues with my intestines, more than the surgeon even knew from the colonoscopy, MRI, and CT; my 2 hour surgery turned into five (stricture in the ileum, 2 fistulas, severe fissures, fusion to my pelvic wall, etc...).  According to my surgeon, age and overall health can play a role in recovery.  Not sure how your overall health is or how old you are.  I am 29 and otherwise in good health (obviously anyone can end up with complications after surgery, according to my Dr it’s just less likely if you are younger and in good overall health).  My surgeon told me that if I was older and/or in worse overall health I would have ended up with a temporary stoma...really happy that didn’t happen! Hope you also have a quick recovery so you can start your family!


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## vanilla_chai (Apr 15, 2012)

Hi Heather
That's terrific to hear you're doing so well, even with such a difficult surgery.  I look forward to hearing how going back to work is for you 

My Dr is actually quite fine with the pill in there.  He said most of the time it doesn't cause a full blockage, it usually just floats around.  We wouldn't have gone this route except my big goal is to not get a blockage while pregnant

I haven't met with the surgeon beyond the original meeting before all the scans and tests were done so I'm not sure about details but he usually does laproscopic if its possible.

I've been sick so not terribly active but I'm not in horrible shape.  My immune system is bat crap crazy, but everything else seems to work fine   Unfortunately, I'm coming up on 35, so I'm looking forward getting into a good place with Crohn's. 

I guess I'm hoping to work from home way before the 6-8 weeks.  My job is the definition of sedentary, I can literally do it from bed.  I don't usually work from home bc you loose the ability to meet with people but I should be able work from home for a few weeks.  I have important meetings every 2 weeks, so unless the timing is right I'll probably miss at least one, but I can call in for that.  I might be being too hopeful but a girl can hope, right? Now I just have to figure out what to tell my boss...

I hope Monday goes well for you!
~Ali


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## Heather_D (Apr 15, 2012)

Hi Ali,

That's interesting about the pill and also great you can work from home!  Your job sounds very similar to mine as I can also work from my bed if needed (haha); which has been very beneficial over the last few months since I was so sick.  So I also haven't been that active for a while, I was fairly active before I got sick so that probably helped.  I had told my manager months ago that I was probably going to require surgery and she had seen how sick I was, so she was very supportive.  Hopefully your boss will react the same way.

I think you will be fine calling into the meeting if needed, especially if you are not on any heavy pain killers.   I never even filled the prescription for the Percocet.  I stopped using pain meds 4 days post-op and I haven't needed them since.  I know everyone is different though.  I think I have been fairly lucky.  I got up and walked a lot though and did what the surgeon and nurses told me would help me heal faster.  I was up and in a chair the morning after the surgery and 'walked' three times that day (first one was just around the nurses station).  It wasn't really that bad, I had anticipated a lot worse.  I went for six walks the next day and just kept doing more until I was able to go home.  

My husband and I are also trying to plan on when we will have a baby, so me being able to eat was definitely a necessity!  I think tomorrow should be fine at work.   We are closing on a house next Friday and also selling our condo (nothing like surgery and moving all within a month!).  So yesterday I spent the day helping my husband and our friends and family move our stuff into a POD to be moved to the house.  On top of it our condo is on the third floor with no elevator! I didn't do as much as I normally would with a move, but I still did way more than I had been planning.  I am a bit sore today, but in my legs, hips, and arms from not exercising lately; my abdomen doesn't hurt! I had a follow up with my surgeon on Friday (4/13) and I was told I could lift things as long as it doesn't hurt my gut; the risk being a hernia.  He never gave me a weight limit though.  He said that he used to tell people not to lift more than 10 pounds right after surgery; however I guess studies have shown coughing and sneezing is more pressure on your gut.  By the way, definitely try to hold your stomach for a while when you cough or sneeze; it's not pleasant.  The first time I coughed was 2 days post-op as I was falling asleep; that was one of the more unpleasant things I have experienced since the surgery.    

I will let you know how tomorrow goes.  I definitely hope your surgeon is able to perform the surgery laparoscopically; as you should heal a lot faster and spend less time in the hospital!  

Good luck and keep us posted! 
Heather

Sorry for the book...I hope you find the information helpful.  I know I found reading other's stories very helpful prior to my surgery.


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## vanilla_chai (Apr 15, 2012)

Thanks Heather, this is so helpful.  I had asked here how long people were out from work and it sounded like most people were out for quite a while

I will have more info once I see the surgeon but I think its best to tell my boss as soon as possible.  I expect my boss will be relatively understanding.  Personally he'll understand but we're under a huge development push right now, so the timing isn't terrific. I'm hoping to go in with as much of a plan as possible to ease that transition.  

So I guess tomorrow is a big day for me too, both telling my boss and then waiting for the call to set up the apt with the surgeon... 

how can it be stressful both to wait for the call and also stressful to get the call?  Oh the drama 

good luck with your week, closing on a house and going back to work 3 weeks after surgery, you should get a trophy for that!
~Ali


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## Heather_D (Apr 15, 2012)

I definitely understand the timing concern.  I work on a system that process payroll taxes and I was out over quarter end!  Oh well, that's the way it goes sometimes.  My whole team has been really supportive though.  

Everyone's recovery is definitely different.  I was pretty determined to be back to work within 30 calendar days though; my bonus gets prorated if I'm out over 30 days.  I also wanted to be back before the closing as I would have to provide additional paperwork if I wasn't an 'active' employee at the time of the closing.  However, when I left I told my manager I would have to play it by ear since there is no way to know how long it might be.  I feel great though.  I don't even think it had been a full week before I felt better than I did before the surgery; I was in a lot of pain.  Sleeping I think was the most uncomfortable at first since I didn't lay completely flat in the hospital.  Took me a few nights to really be able to lay down flat on my back and be comfortable and a couple more nights before I could sleep on my sides again.    

I hope everything goes well with your boss and I definitely understand the stress of waiting and for the call.  Once you have the appointment it's also double edged; at least I thought it was.  I was relieved that I finally had an appointment (as I was hoping that would be the turning point and it was), but then I was really nervous about the surgery.

Good luck and definitely keep us posted!  I definitely hope you have a fast recovery! 
Heather


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## vanilla_chai (Apr 16, 2012)

Well I got the call from the nurse this afternoon.  I actually got a call from her this morning saying I'd get a longer call from her this afternoon.  She said I'll be getting a call from the scheduler later this week.  (loads of calls about calls) but no apt w the surgeon since I already met him in January

She gave me some details and went over basic health stuff.  She said my surgery is actually being classified as a right hemicolectomy bc they're taking such a small section of small bowel but that I don't need to do a prep bc they're not really taking much colon either.  That seems weird to me but I'm happy to not go through another prep, I'll just have to fast

This hospital doesn't schedule OR times (just dates) ahead of time, I'll just get a call @ 4pm the day before telling me when to show up but she said I should get a private room w a private bathroom and an extra bed so my husband can stay if he wants, I'm thrilled about that, both having the husband there as well as my own bathroom.  

As far as when I'll get surgery, normally I'd be looking at an early June date but since I have a retained capsule I might get bumped up a bit

She actually thought there was a good chance I could go back to work after my 2 week post-op, sounds like things look fairly simple which is great news.  I guess I'm still thinking I'll maybe work at least part time the week I'm at home but I'll have to play it by ear

I told my boss today and he was a bit dismissive but said we'd figure it out and to just let him know when I knew more timelines

I think my biggest concern at this point is getting through the nausea. Today I made 1/2 a protein shake for breakfast and I was so sick I took a phenergan.  I felt well enough to eat a small bag of chocolate rice cakes, then felt really sick and took another phenergan (my rx is 12.5 and I can take 1-2 every 8 hours).  7.5 or 8 hours after the first, I was sick again so I took another one.  This one did me in, the exhaustion was over whelming so I drove home (that was a horrible drive) and fell crazy asleep for a few hours, waking up to talk to the nurse and then going back to sleep.  Obviously that is not an answer, but being so nauseous I can't focus on work isn't a solution either.   I guess if it keeps up I'll have to call the GI and see if I can get the surgery done sooner rather than later 

Heather, I hope your first day back went well


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## Heather_D (Apr 16, 2012)

Hi Ali!

You have to love all the calls regarding future calls!  I don't think most hospitals give a time until the day before.  I had to call between 10:30 and 4:30 the day before to find out what time to show up at the hospital.  They had be get there about 1 hour 45 minutes before the surgery...I have to say, when I was waiting for them to call me in to the surgery prep area is when I started to get really nervous.  It really wasn't worth worrying as much as I did though; everything went really well.  I would have been pretty happy also if I didn’t have to do a prep.  I’m still a little surprised that they don’t have you do one in case they find any additional issues once they open you up.  Not trying to worry you, but they found additional issues with me that didn’t really show up in the tests they had me do prior to the surgery.  They knew though that my terminal ileum was the biggest issue though; so I had to do a prep regardless.  

For your sake, hopefully they can bump it up.  I also found the waiting for the day a bit stressful.  I read a lot of stories on here; some of them made me feel better some stressed me out more.  At the same time though I felt a since of relief once it was booked.  I probably could have gone back to work after 2 weeks if I had wanted to.  My surgical follow up was 3 weeks after my surgery so I just waited for that.  I had to get a Return to Work consent in order to go back as I was on short-term disability.  

I think it's hard for managers at first when we don't have definite dates and a lot of detail.  I tried to give my manager as much detail as I could, but until it was booked she couldn't really do much.  My surgery was booked 3 weeks in advance; which I was happy about.  The surgeon asked when I wanted it, I said sooner rather than later.  He actually then asked if I meant tomorrow soon or within a month.  I told him I would have it tomorrow if he could do it!  

Have you tried more clear liquids?  I got to a point where that was pretty much all I could eat that didn't make me sick; wasn't fun, but kept me out of the ER.  I was pretty much living off of jello, Gatorade, popsicles, noodle soup, and I ordered Ensure Elive on-line since they don't sell it in store (I had it in the hospital when I had been admitted before).  My GI had prescribed Tylenol 3 for pain; however I didn’t find that really helped.  I don't recall the name of the anti-nausea medication my GI had also given me, but 1 pill would wipe me out within 10 - 15 minutes, so I couldn't work or drive while taking them.  So I would normally suffer until I got home (if I was working in the office) and then if needed take one when I got home and pass out for the night.  Hope that the nausea subsides and you stay well.  

My first day back went well...other than me being there for over 10 hours!  We had an issue at the end of the day; oh well, that's the way it goes!  I feel fine though. 

Good luck with everything and let us know when you do get a date! 
Heather


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## vanilla_chai (Apr 24, 2012)

Well, I have a date, June 12.  Wow, that's a long way off but at least it gives me time to prepare.  I did take your advice Heather and switched to just juice during the day and a protein shake at night.  It seems to be half work stress bc I was able to eat over the weekend with just a little nausea but sure enough, Monday morning was here and I was back to feeling crummy.  Oh well, at least I've figured out how to get through the day 

I did kinda watch a youtube video of a right hemi-colectomy.  Yikes its cool but yikes 

I was thinking back to my conversation with the nurse and I think the followup is 2 weeks after I get out of the hospital - so closer to 3 I guess.  I emailed my boss the date but he's out sick so I haven't had a chance to talk to him any further.

Guess I'll spend the next 7 weeks reading up as much as I can

hope last week went well for you Heather - work and buying a house - I'm still amazed at that!


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## Heather_D (Apr 24, 2012)

Hi Ali!

Glad to hear you have a date.  Hope the liquids help you feel ok until then, that's all I found that worked for me.  I have been doing really well.   Felt a little blah late last week (nothing like before though), but I think that was from eating out for three nights in a row!  Trying to eat better now that we're in the house. Things have been so crazy.  I have unpacked most of the boxes and I'm working on painting the livingroom!  I took yesterday and today off to work on the house, but I'm back to work tomorrow.

Good luck and keep us posted!  Stay well!
Heather


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## OnMyOwn (Apr 25, 2012)

Hi Vanilla - Best wishes on your surgery, I am 8 weeks post-op and headed back to work next week. My work involves a lot of travel so I took as much time as possible to heal up. Just be sure you take the time you need to heal as this surgery really does take a lot of energy out of you. If you are in the US and work at a company with over 50 employees then your leave (up to 12 weeks) is likely covered under FMLA and your employer is required to accommodate your absence.

I'm always amazed to hear of GI's doing the pill cam when a stricture is suspected... that just doesn't make sense to me. As soon as my GI suspected a stricture he put me on a low res diet - no peanuts, popcorn or raw veg for fear of blockage. It seems like a pill cam would  fall into that category!


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## vanilla_chai (Apr 25, 2012)

wow, did you have a laproscopic surgery OnMyOwn?  It looks like from your footer it was quite an operation!  My surgeon seems to think this is pretty straight forward and will only need to take the 2cm of TI, so fingers crossed!

I am in the US, but am at a very small company and am the only one who does what I do.  Fortunately its a desk job.  I actually worked some from the hospital when I had a blockage.  I plan on telling them to not expect me full time or full speed, but if things go well I might be back some after a week or a week and a half...

We went down this path with the pill cam quite simply bc I'm 35 and wanting to have kids and had been having blockage type pain periodically for years and they were getting worse, culminating in me spending 5 days in the hospital last December.  My main concern was avoiding a blockage during pregnancy.  My GI did the pill cam specifically saying it was to make sure it didn't get stuck.  We talked about the dummy pill but he said you can't tell what part of the intestine its stuck in and that since we wanted to do surgery if it were to get stuck he'd want to send the real pill cam down anyway so I just skipped the dummy pill.  It also helps that they've seen patients live with a trapped pill for quite a while.

I am quite scared of the decision, but when I think through it I'd do it all again, even knowing how it turned out.

I hope your return to work goes well OMO


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## giftedbyadoption (Apr 25, 2012)

WOW ...who is your surgeon.... no prep when they are taking part of your colon?? Read up on this I would be concerned about infection? Because even though its just part of your colon you do not want any bowel getting loose in your body  
Seems odd to me.... Did you do the sitz marker study or just the camera? I would recommend getting that study before surgery to any one having surgery to make sure the rest of your bowel is flowing right before you go through all of this, then you dont have to end up BACK in surgery AGAIN later for more bowel removal or a colostomy or eilostomy.... the more test the better so less trauma less surgery's  I went through 9 months of testing. Yes it was hard and I was very sick lost 30lbs in the process not being able to eat but at least I got it all done @ one surgery and right the FIRST surgery. I hope all goes well in one surgery for you sounds like you have been through a lot all ready ((hugs))


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## vanilla_chai (Apr 25, 2012)

Yeah, crazy on the no prep thing, right?  and even crazier, I'm considering asking if I can just do one for peace of mind - but who in their right mind requests to do a prep???

The surgery I'm getting sounds just like a ileocecectomy, I'm not sure why they're calling it a hemi-colectomy except that its only 2cm of TI.  I've never had anything show up on the colon, I did start having some left side digestive discomfort but when I did the pill I felt it, and the pill never touched the colon so it must be in the small bowel.  From what I understand, they just take the cecum out to simplify the joining of the 2 sections.


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## giftedbyadoption (Apr 25, 2012)

vanilla_chai said:


> Yeah, crazy on the no prep thing, right?  and even crazier, I'm considering asking if I can just do one for peace of mind - but who in their right mind requests to do a prep???
> 
> The surgery I'm getting sounds just like a ileocecectomy, I'm not sure why they're calling it a hemi-colectomy except that its only 2cm of TI.  I've never had anything show up on the colon, I did start having some left side digestive discomfort but when I did the pill I felt it, and the pill never touched the colon so it must be in the small bowel.  From what I understand, they just take the cecum out to simplify the joining of the 2 sections.


OH sorry I miss understood so the large bowel is not effected at all... that may be why you are having no prep then?? MUCH easier surgery then messing with the large bowel, so they say. I wouldnt know though I lost my whole large intestine/colon one in the same lol... and have a Ile... permanent. Go online and see what people usaully do maybe they do not prep for this??  On a regular basis?


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## Heather_D (Apr 25, 2012)

The prep I used for my surgery was 64 oz of Gatorade (you could use any clear liquid) and a 238g bottle of Miralax.  The hospital also suggests 4 Durelax tablets a couple hours before you start, however they tend to make me not feel well due to the fiber, so I just stopped eating any solid foods 2 days before the prep (not that I ate a lot of solid food before the surgery anyway).  I believe I started drinking the prep around 2 PM the day before the surgery.  I could have any clear liquids until midnight (broth, popsicles, black coffee, soda, etc...) I then wasn't allowed anything except water from midnight until 7AM the day of the surgery.  After 7 AM I wasn't allowed anything to reduce the risk of a lung infection.  These were the directions I was given before even knowing the time of the surgery, so I don't think that mattered.  My surgery was around 11:30 AM though.

The top of my colon was also diseased and they took my appendix.  I saw that as a positive though as now I know I can never have appendicitis!


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## vanilla_chai (Apr 25, 2012)

I'm currently going through the lovely emotional roller coaster.  At some points I think its all good, I really trust this team of drs.  Then a moment later I'm freaking out about all the whats going to happen and the whys (and why no prep).  Hopefully this stage will pass and I can figure out if I need to call the surgeon's office and get more info for my peace of mind or if I'm fine with how things are. 

I finally got to talk to my boss today, he had me schedule to take off 3 weeks and said I could work whatever I ended up feeling like.  Next he'll tell his boss, then I guess it'll be public knowledge...  I have 15 coworkers and 5 already know but everyone is keeping it quiet till it goes through the proper channels


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## Heather_D (Apr 25, 2012)

Will you be working from the hospital?  I wasn't released until the 5th day post-op; which from what I can tell from this forum is fairly normal.  It was also really hard for the first couple of days to keep my eyes open for extended periods of time.  First day post-op I put on chapstick and started falling asleep trying to put the cap back on.  I woke up when my sister started laughing at me.


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## vanilla_chai (Apr 26, 2012)

Heather_D said:


> Will you be working from the hospital?  I wasn't released until the 5th day post-op; which from what I can tell from this forum is fairly normal.  It was also really hard for the first couple of days to keep my eyes open for extended periods of time.  First day post-op I put on chapstick and started falling asleep trying to put the cap back on.  I woke up when my sister started laughing at me.


lol, thanks I'll expect that, and my period - but that's another stress for another day...

I told my boss that I wasn't planning on taking my laptop to the hospital.  From what I understand, I should be napping and walking most of the time, so I'll just bring my phone with netflix and kindle for entertainment.  What I told him was as soon as I was off the pain killers I'd probably start to get bored and want to work a little.  He said that was fine but that he'd tell everyone 3 weeks so there weren't unreasonable expectations.  The other good thing is, he decided to have me train a coworker I've worked with very successfully in the past, so that should make the transition a lot smoother


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## Heather_D (Apr 26, 2012)

lol...3 weeks sounds reasonable.  I believe you said 3 days before, so I was a little concerned. 

I got my period about a week after the surgery, still not fun.  I was hoping it would be late from the trauma my body had just gone though...nope, right on time like always!


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## vanilla_chai (Apr 26, 2012)

Heather_D said:


> lol...3 weeks sounds reasonable.  I believe you said 3 days before, so I was a little concerned.
> 
> I got my period about a week after the surgery, still not fun.  I was hoping it would be late from the trauma my body had just gone though...nope, right on time like always!


oops, you're right  so glad we can edit our posts here!
thanks


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## vanilla_chai (Apr 26, 2012)

well, they just called to say the 12th doesn't work, choose the 5th or the 19th.  I went with the 5th.  I don't mind waiting 1 week to get to a meeting but I don't think I have it in me to wait 2... 

so 6/5/12 is now the date...


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## Heather_D (Apr 26, 2012)

Just think of it this way...now you will be 1 week post-op when you were previously just going in for the surgery.  1 week into recovery!


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## vanilla_chai (Apr 28, 2012)

Heather_D said:


> Just think of it this way...now you will be 1 week post-op when you were previously just going in for the surgery.  1 week into recovery!


seriously, I had been willing to wait 1 week to be able to get to my meeting but 2 was just too much.  The good thing is my coworker said she'd fly back early from a family visit so she could fill in.  She is really good to me

and yes, at this point I just want this stupid thing out.  I'm so hungry by the end of the week its horrible.  I did manage to eat pretty well today, maybe I'll even have put back on a little weight - I'm tired of having to keep buying smaller clothes that I know won't fit for very long

Beyond that, I've pretty well packed my hospital bag - mostly bc it makes me feel better to have something to do, but I figure I might as well do it now in case I feel worse later on.  

plus I checked in w all my drs, pushed off my annual girl checkup (it was scheduled for the week after - that was not happening), set up with my allergist to get extra shots in to minimize the impact of missing a few weeks and canceled Remicade.  Oh, yeah and went to the chiropractor so my back will be in better shape before I spend a bunch of time compensating for no abs

So now I just wait - and wait for my boss to tell his boss and have it be public knowledge... I hate keeping secrets


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## Heather_D (Apr 29, 2012)

Good call on canceling your annual, you definitely do not want to do that 1 week post-op.  I still have trouble with my husband touching my stomach.  Not because it hurts, I've just become very protective of that area.  Your back will also be sore.  I'm not even sure if my back was sore for over compensating or just because I hunched over and would get really tense when I was afraid something would hurt.  Maybe if I had gone to a chiropractor ahead of time though I wouldn't have had so much trouble! 

That's great that your co-worker was willing to come back a week early!  I'm not sure if my co-workers would do the same.  It's nice having someone you can rely on like that. 

I have actually not bought new clothes.  My pants (especially work pants) don't really fit, but I haven't wanted to spend the money on new ones; since we spent a lot of money buying the house and now we're putting a lot of money into it.  I was going to wait a little longer to see where my weight might even out at before going out and buying a bunch of new clothes.  My weight tends to fluctuate anyhow; so I'm curious to see if the surgery has any impact on how quickly I gain/loose weight.  I'm going to try and get back to the gym tomorrow!  

Let us know if you need any support!


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## feealicious (Aug 24, 2012)

So how did things go??


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## vanilla_chai (Aug 25, 2012)

Not seeing a dr from the time I found out I needed surgery to the surgery 2 months later was a huge stress but the surgery itself went great.  I took off the day before the surgery and was in the hospital Tuesday through Saturday morning (they would have sent me home Friday but had me stay to get remicade).  I worked about 4 hrs from home the day after I got out (bc my project had blown up and no one would bring me a computer in the hospital - lol) and then a few hours that week and more the next week.  All in all I took off 80 hrs over 3 weeks.  I was off narcotics Thursday (tues was surg) and off tylenol I think within a week.  I think that's pretty extreme but it worked for me.  

I did lift 2 costco packs of gatorade yesterday and my incision site now hurts so I'm wondering about that but I'll just see how that goes

Afterwards I've been able to eat again which is just amazing.  I have had some gi stuff, could be more food sensitivities.  I did just go in for my annual and holy crap it was more painful than its ever been so I'm wondering about that as well but I am having my followup colonoscopy next week so I'll know soon enough 

are you about to have surgery feealicious?


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## feealicious (Aug 25, 2012)

I'm not...I'm actually still in the stages of being diagnosed! Been reading up on every single part of the forum though soaking in information! Glad to hear your surgery went well!


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## bumble_bee (Aug 28, 2012)

Hi vanilla_chai! I just read your story here and it sounds exactly like the situation I'm in right now! I've been dealing with a stricture in my TI that's about 4cms, causing partial blockages, bloating, gas and all around discomfort! I've been on Remicade for about a year which i think led to the stricture possibly by forming scar tissue. Either way, I've spent the past few months trying to convince my GI that I need this issue fixed because I want to have a baby and want to be 100% healthy in order to do so! Had a CT enterography in June which showed some narrowing but couldn't determine if it was scar tissue or inflammation. My bloodwork has been completely normal for months and months so I'm pretty sure its scar tissue. My doctor has been trying to avoid sending me to a surgeon, trying antibiotics and low residue diet, even mentioned a course of steroids which I said no too. Finally had a colonoscopy last week which showed my TI was so narrow he couldn't even get in there with the scope so now I'm finally going to get to see a surgeon! Yay...I think! I'm just waiting now to find out when which sucks cause i too HATE waiting for these things! :yrolleyes:

Anyway, glad to hear things went well for you and you're feeling better! I hope to have the same results sooner rather than later myself! Love your name by the way...yumm


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## vanilla_chai (Aug 29, 2012)

Feealicious, great idea.  I'm an information junkie and it always helps me to know what to expect bc things can happen really fast.  The one thing I didn't fully understand till it happened was the NG tube, although that might have been for the best   Good luck in your journey!


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## vanilla_chai (Aug 29, 2012)

Wow, Bumble Bee, how crazily similar our situations are!  The (previous) GI couldn't intubate my ti in 2010 but no one ever mentioned surgery to me until I ended up in the hospital for 5 days at the end of 2011.  

I'd had the "I'm in trouble" intuition after riding out an episode (partial blockage?) at the end of 2010 and when I was pregnant in the middle of 2011 I kept saying "I'm just hoping to get through this pregnancy without a blockage".  Apparently I should have been more specific in my hopes, bc I did miscarry before I got the blockage...  But spending 5 days on massive amount of solumedrol and thinking "wow, I could be 7 months pregnant right now" really made me consider if it was time for surgery.

Anyway, the one thing I wanted to mention was that I didn't see my OB while making the decision and at my annual last week he seemed nervous that I could end up with adhesions that would block an ovary.  He's one of those crazy laid back drs who doesn't seem concerned about much so it might be worth considering in your plans.  I was very clear with my GI who is an IBD specialist that I was looking to have the best chance of pregnancy and he never raised the concerns about adhesions.  Hopefully my OB is just being (unusually) cautious but its something to consider...
It might be worth creating a post in the parenting section to see if anyone has had trouble with adhesions blocking ovaries or Drs being concerned about it.

I'm still glad I did it, I was down to protein shakes and chicken with rice and cheese, that's no way feed a pregnancy.

Good luck making a decision, I think that is one of the most difficult parts, when things are unclear.

I'm prepping for my follow up colonoscopy right now (he usually does it @ 6 months but oked 3).  Fingers crossed I get the all clear to try to get pregnant.  What a weird world it is where you good looking for medical clearance before trying to have a baby...  I'll be so glad to be out of this waiting game, I'm not getting any younger!


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## bumble_bee (Aug 29, 2012)

That's a good point. I have talked with my GI about it, using wanting to get pregnant as one of the main reasons for persisting with this. I had surgery 7 years ago to remove 2.5 feet of small intestine and a year or so ago my doctor asked about me wanting a baby and said if I wanted to that it would be a great time to start. Good thing I didn't listen to him as I ended up with an abscess and in hospital with a flare and then onto Remicade! I've never had either my GI or GP mention anything about adhesions but I have read about them on my own. I didn't even realize they could cause issues with blocking ovaries. I'll ask the surgeon when/if I ever get an appointment to see him! 

I think at this point I have to go with it though cause I just can't go on with this hanging over my head, especially if I want to get pregnant. I cannot even imagine going through an obstruction while pregnant.

I'm really sorry to hear that you went through the miscarriage, that must have been really tough. I know a few friends that have miscarried and I can only imagine how hard that would be. I feel like our bodies know better than anything else the situation at hand and it does these things for good reason sometimes that we can only see when looking back at it! I have a friend who's miscarried numerous times and just found out that her husband has an odd chromosome issue where there's only a small chance they can ever conceive a healthy baby. Maybe her body knew this before they did and that's why it miscarried...kinda weird 

Thanks, maybe I will try posting about it to see similiar experiences. I think the same thing about the medical clearance....oh how I envy people that can actual do things when they want without getting the 'ok' from a doctor first! 

Good luck tomorrow, hope it goes just as you're hoping...and good luck today with the prep!


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## vanilla_chai (Sep 1, 2012)

Yeah, the idea of an obstruction during pregnancy is scary.  I'd still been really sad about the miscarriage up until I ended up in the hospital, then I found I was just really relieved I didn't have a baby going through all that too. 

I did get the go ahead from the GI after the colonoscopy.  The only thing he noted was some stuff on the join and "very mild" narrowing at the join.  He did hesitate and say its possible we looked too soon but he thought it was ok.  This seems to be his demeanor so I'm not that concerned.  So, Yay!

Good luck with your journey, hope it doesn't take too long


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