# Surgery!



## tiloah

I'm scheduled for a right colectomy 6/15. Hopefully I can get down on the Prednisone by then. I am so excited! When they actually scheduled me in the system I felt this overwhelming sense of joy and relief. I didn't realize fully until now just how much I wanted this!

She seemed to think it would be fairly straightforward. She said most of my bowel is healthy, so she seemed optimistic that getting that inflammation out of there would put me in remission for a long time (maybe forever?). I take it with a grain of salt though, she is a surgeon not a GI specialist.

She said she didn't anticipate anything going wrong and thought the bowel would reconnect nicely. Bring it on!


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## archie

Good luck I feel brill since my resection, about 5 weeks of recovery (1st on the hardest)and then felt better than I had for a long while.  Hope you get as good a response, I had weaned down to about 5mg of pred pre surgery then they took me off everything which was the best part.  I'm not sure what a colectomy involves though compared to my ileocecal resection but all the best.


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## Karissa

Good luck!


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## tiloah

The right colectomy is an ileocecal resection.


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## archie

diesanduhr said:


> The right colectomy is an ileocecal resection.


Ha ha I should've known that!!!!!!!


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## Keona

YAY!!  I am happy to hear that this may put you into remission    very happy indeed


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## Grumbletum

Wow, they are not hanging about, then! Good, you can get it all done and dusted and you sound like you are so ready for it. What's the recovery time?
H x
Oops,Just spotted Archie's post re: recovery.


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## tiloah

archie said:


> Ha ha I should've known that!!!!!!!


They use so many different terms honestly, I don't know how they expect us to keep track. Just today the term fistula was used for the first time. My GI has never used that term but the surgeon did. The GI always said "abscess" or "rupture." 	:yfaint: I say we get to pick whichever term freaks the non-Crohn's people out the most. 

Thanks for the support everybody!


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## tiloah

Grumbletum said:


> Wow, they are not hanging about, then! Good, you can get it all done and dusted and you sound like you are so ready for it. What's the recovery time?
> H x
> Oops,Just spotted Archie's post re: recovery.


They gave me a choice between the 15th and the 22nd and I was all, "The 15th! PLEASE!"

She said to look forward to five days in the hospital, to be able to go back to work at least part time in one to two weeks, and no roller derby for two months!


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## archie

Is an abscess a fistula??? i'm learning something new everyday I thought a fistula was a channel between 2 organs that isn't supposed to be there!! i'll have to go back to basics I find the Doc, GI and surgeon all use different terms I think they do it to confuse you even more!!!


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## tiloah

archie said:


> Is an abscess a fistula??? i'm learning something new everyday I thought a fistula was a channel between 2 organs that isn't supposed to be there!! i'll have to go back to basics I find the Doc, GI and surgeon all use different terms I think they do it to confuse you even more!!!


Technically they are different things, if I'm not mistaken. It's possible I have a fistula with/that caused an abscess? Who knows.


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## DustyKat

Sending you all the luck in the world hun!!!...

:goodluck::goodluck::goodluck:

Sarah has had a fab outcome from hers and I'm hoping and praying that Matt follows suit! 

A fistula and abscess are two different things, but they can be connected. 

Dusty. xxx


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## Crohn's Mom

Best of luck to you!! 

May this bring you remission for many, many years !


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## hawkeye

Good luck diesanduhr !!!


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## Lisa

Good luck with everything!!! Hop back on here as soon as you can after and let us know how you are doing!


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## ameslouise

Hey Nicole!  Good luck to you next week!  Hope all goes well, recovery is easy and you feel tons better when it's all over!!

Keep us posted!! xo - Ames


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## tiloah

Thanks everybody. 

I am trying to be realistic about it and not get my hopes up too much, but I really feel like this is going to change my life and I am so so ready for it.


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## tiloah

Also I can't tell you how relieved I was when I found out they don't put the catheter in until you're already out! I was having some anxiety about that. I pride myself on my ability to tolerate being poked and prodded without reacting but that's a bit much for me.


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## archie

I've had a catheter 3 times now and it's nothing to worry about, couldn't wait to get rid of it though but not Painful, I think it's worse for guys!!! The only thing I disliked about the surgery is they gave me an epidural for pain relief before the GA and it gave me nothing but trOuble, they couldn't get it n at first and when they did it was sore. I couldnt wait to get it removed but I had to wait at least 24 hrs post surgery due to the clexane injections I'd had, I can honestly say I didn't need it the actual surgery site wasn't that painful, if I was having the surgery again I definitely wouldn't have an epidural!!


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## xJillx

I wish you all the luck in the world on the 15th!

I hope you have a speedy recovery and have YEARS of remission!


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## Astra

Good Luck from me too hun!
Hope it's the solution and keeps you pain free forever!
xxxxxxxxx


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## ameslouise

Hey Nicole, just wanted to remember to say good luck on Wednesday!!!  I hope it all goes well and you are feeling tons better very soon.  

Re the catheter...I had to have mine pulled out and reinserted about four days after my surgery and while I was wide awake. In the scheme of things.... it was really not that bad! But it's still better to have it done while you are already under!

xo xo - Ames


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## AndiGirl

I wanted to wish you luck, Nicole.  I will keep you in my thoughts and prayers.  Hopefully this procedure will bring you the much needed relief and increase in your health and happiness.  When you are bored during the recovery stage, we are hear for you.  Hugs to you, sweetie.


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## tiloah

You are all so wonderful! Thanks for all the well wishes.

I was at dinner the other day and some people were asking me questions and I felt better prepared to answer them knowing the experiences of people on this forum. At one point I said "Some of us..." and it felt good to have an "us" because before I found this place it was just me. I registered a year ago as of June 24th!


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## DustyKat

Awww, that is so sweet! 

I know this is a special place but hearing it told like that is just fab. Thanks for that! 

:mademyday:

Dusty. xxxxxxxx


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## Keona

hey - is someone going to update us?  Good luck !!!!  You will do great .. I hope this provides some relief!!  

Wendy


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## jminutel

*Recovery*

I am actually in recovery from my second Ileocolectomy which I had on May 16th. The recovery isn't bad, most of your pain (if not all) should be gone by the time you leave the hospital. The best part is you should notice a difference in your symptoms almost immediately. Even while I was sitting in the hospital both times I could already tell that my Crohn's wasn't effecting me. A lot of doctors don't like to resort to surgery but I'm glad I had it done, and I'm sure you will be too. 

Best of luck to you and hoping for a speedy recovery.

:ybiggrin:


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## Karissa

Definitely update us during your recovery! Good luck- you'll do great!


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## Grumbletum

When do you go into hospital? Will be thinking of you. 
Helen x


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## Astra

Another good luck Nicole from meeeee!
It's my son's birthday the 15th so that's a lucky day!
I love the 'us', it's so us!
xxx


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## tiloah

They just called me with my time. I check in at 6 a.m. Wednesday morning (yay first thing in the morning) and surgery is at 7. I will be sure somebody knows to post here to let you know how it goes.


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## Grumbletum

Great, not too much time hanging around in the hospital before the op, then  . All the best, m'dear. xxx


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## tiloah

Hi Everyone, 

This is diesanduhr's husband.  And I just wanted to update this with news of her surgery.  Everything went well.  I'm sure she'll be up and posting in the near future.

I'd like to personally thank all of you for the support and the website setup to help all in this boat.  It's been a huge help to both of us.

Thanks,
   Looking forward to recovery!


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## Grumbletum

Thank you so much for the update and very glad to hear that things are going well  Give her a big kiss and a gentle hug from me ..... and a hug for you too. I'm sure you are needing one!
Helen xxx


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## archie

wishing you a very speedy recovery and take all the drugs they offer!!!


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## DustyKat

Thanks for the update!

I'm so happy to hear that all went well! YAY! Get well soon hun and I hope you have a speedy and very uneventful post op period! 

:getwell::getwell::getwell:

Much love, :Karl:
Dusty. xxxxxxxx


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## Crohn's Mom

Thanks for the update!
So happy to hear all went well!


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## tiloah

Hey guys! I have some ranting to do later but typing is kinda tough right now with all the things attached to my hands.

I am doing pretty good. Definitely feeling better now than I had expected. *knock wood* I think they finally found a pain med for me that doesn't make me extremely ill (Dilaudid). I'm still trying to take as low a dose as I can tolerate. Makes me a little dizzy and they think that's why I'm itchy. I am hoping I can stop using it soon. Hope you all are doing well.


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## LOSTnut

Probably they can give you some antihistamines with the Dilaudid to stop the itching. 

Glad to hear that your surgery went well and wishing you all the best for a speedy recovery.

:hug:


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## tiloah

Yea they want to give me Benadryl which I hate - I might just deal with the itching, it's not intense.


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## LOSTnut

At least you finally found something to keep the pain in check, always a biggie! 

LOL, I was the opposite of you and couldn't handle the Dilaudid. 

Are you pushing the button?


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## Grumbletum

Hello you  Great to see you back on so soon. Hope they'll be able to make your recovery a bit more comfortable.
H xxx


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## archie

I think I was itchy after the GA it's a side effect, hope your up walking about, I walked walked and walked some more and it still took 6 days til I went to the loo!!!!! glad to hear your not too bad but still take it really really easy...


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## DustyKat

Dilaudid is a derivative of morphine and itching is a common side effect of morphine. Hopefully you'll be off it soon and outta there! 

Thinking of you hun, :hug:
Dusty. xxxxxxxx


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## hawkeye

diesanduhr - glad to hear that things went well.


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## ameslouise

Hey Nicole! So happy to hear all went well!

Relax and take it easy - give yourself plenty of time to recover.

Thinking of you and wishing you a very easy recovery.  xo xo - Ames


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## AndiGirl

Hi Nicole!  I have you in my prayers and am glad to hear that things went well.  Please take it easy.  Your health is the most important thing right now.


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## Grumbletum

Hi, how are you doing? How's the recovery going? X


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## Karissa

Recover well! We're all thinking of you!


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## Keona

Hey.... how are you???   I am soooo glad to hear all went well..... waiting on the rant  

yep..I itch with dilaudid as well and the good news about it is it isnt AS addictive as some of the other opiates.  not to say it isnt but i didnt find the withdrawl very bad at all.... I found the withdrawl inbetween doses to be bad in terms of mood.  I remember getting quite irritable.  

anyhow... I hope you are hanging in.  I hope you can give an update soon 

Wendy


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## Tami Lynn

Glad to hear that everything went well for you! 

I too had surgery a week ago today on 6/13/11. For me it was an open laparotomy and strictureplasty. The Dillaudid made me itch too. They cut my dose down to 1/4 and it seems to me that the further along recovery was, the worse it made me feel (instead of better). I'm surviving on Extra strength Tylenol as the only mode of pain relief now.

 I just came home yesterday. My advice is take it easy, but walk and move around/sit up as much as you can tolerate without allowing the pain to get too bad. Best wishes for a speedy recovery and hope you'll be feeling better than ever in no time flat!


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## Hairball

diesanduhr,  

I was Googling "small bowel resection" and Google popped up a list and I saw "Small bowel resection roller derby" so I just HAD to click.  And here I am.  

I'm a derby referee currently on leave of absence because my Crohn's is too out of control for me to reliably be at a bout.  I still NSO (since an NSO is much easier to replace if they're suddenly sick at the last minute).  

I've had Crohn's for a long time and I am about to call to schedule my MRI which will confirm that my stricture is back (the pain is back, so I am sure it is).   The MRI will probably show that it's time for my first resection (I get MRIs now because my doctor can't get a scope past my stricture -- which is fine because the MRI prep is much much more pleasant).   

Get well soon!  I haven't skated since the day before Easter myself, when my league had an away bout and I drove six hours to get to it and arrived with the big D.  Frustrating!  I took a bunch of immodium and reffed anyway...   We'll both be back out there on the track before we know it.  :ghug:


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## tiloah

Hey guys,

I'm still recovering. I took a few days off of the forum because I was freaking myself out with everything that can go wrong. I think I'm really doing pretty well. I don't know what caused the itching... after the Benadryl fiasco I decided to just cut down on how much I was using. Today I'm not on any pain meds and I feel fine. Just a little tired.


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## tiloah

Hairball said:


> diesanduhr,
> 
> I was Googling "small bowel resection" and Google popped up a list and I saw "Small bowel resection roller derby" so I just HAD to click.  And here I am.


That's hilarious! What league do you ref for? I'm sorry to hear your Crohn's has interfered with your ability to do it... I know how heartbreaking it is. I'm really hoping that in 8 weeks I'll be all recovered from surgery and in remission so I can get back to it and try out.

I hope your situation gets figured out soon and you're back on skates.


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## Hairball

I don't want to say too publicly here but if you look at my name on this forum I bet you could find me...


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## AndiGirl

I'm just checking in to see if your okay.  I hope the itchiness has subsided.  What an icky side effect.  Keep resting and healing.  Hugs to you!


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## DustyKat

Excellent news hun! Keeping my fingers and toes crossed that it all continues to be smooth sailing...Onward and Upward! 

:mademyday:

Dusty. xxx


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## tiloah

I checked in with my GI today. He told me "I think you're going to be feeling a lot better." And I go, "I already do!"

I am off of meds (once I finish the prednisone taper). He is going to check my bloods in 3 months and do a colonoscopy in 6. If the colonoscopy is clear I will stay off of meds. Is this typical? It makes me nervous to not be on a maintenance medication. It's like a security blanket. I know surgery doesn't cure Crohn's. I'm not sure who's happier I'm off of Humira though, me or my insurance company.


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## DustyKat

Woohoo! This is so fab to hear, I am so happy for you hun...:hug:

That's interesting about the meds because that is something I would expect a surgeon to say, not a GI. I would have thought that most GI's are in favour of maintenance meds and I imagine it is more the norm to be on something than not. 

Both my kids are on maintenance medication. Same surgery, same maintenance regime and two different GI's that prescribed them. 

May the good times last a lifetime mate! 
Dusty. xxx


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## Grumbletum

Excellent news


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## tiloah

Hmmm well I should probably get my story out before it's no longer fresh in my mind... Hope somebody finds my experience useful. Keep in mind for a lot of this I was on a LOT of drugs. The order may be incorrect and some things may be unintentionally mis-attributed. I do my best.

Night before surgery I drank the Go Lytely. I chose the lemon lime packets. The first glass was the worst. I tried the hold your nose and drink strategy but it didn't help too much. I definitely wasn't able to drink 8 oz every 10 minutes... I wasn't supposed to have anything to eat or drink after midnight so at 11:50 I called it quits. I think I managed 74/80 ounces. I know they tell you to drink it all but I think that was close enough.

Morning of the surgery I got up, showered, put on my "freshly laundered, warm, comfortable clothes." My mom didn't realize what time it was and my OH didn't know how pressed for time we were. I was grumpy and stressed. We left a little later than planned. When we got to the hospital my mom dropped me off at the front entrance and then parked the car. I checked in with the intake guy. He goes, "Oh day surgery that's good." I didn't know what that meant so I just smiled. Got my bracelet printed off. We went to the surgery waiting room. The lady who checked me in there said it would be day surgery and I would be going home that day. I said, "My surgeon told me I would be in the hospital for five days." The lady said something to the effect of sometimes your doctor doesn't know, or something. This made me nervous. I didn't want to go home if my doc thought I should be there for five days!

Next I went to the room where they prep you for the OR. I took off my clothes and put on my gown. Lots of people came in to the room. Things were being strapped to me. People were introducing themselves and asking me redundant questions. A nice lady injected some local anesthetic and I didn't even feel my IV go in. I ask for the patch to go behind my ear for nausea and someone puts that on. My doc came in and asked if we were ready. I voiced my concerns about people saying this would be day surgery. My doctor told me no way would I be going home that day and not to worry. I felt better. The anesthetist came in. He said he was going to give me something to relax me. I didn't realize it was going to knock me out so I didn't brace myself for that. He gave me the stuff and I looked at my mom and started imitating David After the Dentist (link). I guess everybody thought that was pretty funny. I remember they started wheeling me away and laughing my head off... I guess I was pretty impressed with myself? Last thing I remember is being mid laugh.

I wake up in recovery. My eyes are really, REALLY blurry. I keep trying to get them to focus. There is a bed with a man to my left and an empty bed to my right. I am extremely nauseous. Eventually a woman is wheeled to the spot to my right. The nurse asks if I want pain meds, I refuse. In retrospect, a bad choice. She tells someone else that I've been in pain for so long I don't want her giving me pain meds (I am pretty sure that actually happened). After a while she calls someone on the phone, tells them I have the patch on my ear, have been given two other anti-nausea meds (IIRC Zofran and another ?) and makes a request for Compazine. They grant her the request. She gives it to me and either it makes me feel better or I start coming out of the anesthesia a little better, but they are ready to move me. A nice lady comes and wheels me out and about. I'm taken to the freight elevator and moved from the third floor to the 8th.

They get to my room and this is the worst part. They have to move me from the OR bed to my recovery room bed. I am on and inflatable air mattress. They inflate it and drag me to my new bed. This hurt like I couldn't believe. Next they roll me to my right side to get the mattress free on that side, then my left side to get it out from under me. OMG I thought I was going to die.

My mom was there or came there shortly. My OH arrived a few minutes after they had moved me (good timing). He gave me a stuffed sloth he had ordered for me. I can't even tell you what a comfort this was. I clung to him. It made me feel so much better, or maybe just ok with how awful I felt.

I met my nurse and aid and they took my vitals every hour for four hours and then every four hours for the remainder of my stay. 

I found out pretty quickly that my catheter wasn't working, although the nurses never believed me. The first time it happened I told the nurse I felt like I needed to pee. They said that was normal just because there was a foreign object there, which made sense. But pretty soon it started to hurt. They would move the tubing and suddenly I would "start peeing" and they would declare it was working. This happened at least three times. One time I had to wait quite a while before they answered my call button and the pain just kept getting worse. This was my first day after surgery so I was very limited in my mobility. They told me they would remove it the next morning so I was counting down the hours. Eventually I figured out that if I swung my legs over the bed and attempted to stand, that would get it going again. But it still pisses me off (haha) that they didn't believe me, even though three times in a row my pee would start flowing only AFTER they started fixing the tubing. GRR. One nurse even filled my bladder with saline and then exclaimed, "Oh, it's not coming out." So I can't tell you how happy I was when they took that thing out.

Apparently a new federal regulation if you have a PCA (patient controlled narcotics, not sure what the A stands for) button, they have to have a monitor of your O2 and pulse. Well I kept setting the machine off when I fell asleep, my breathing would slow down too much. So they put me on oxygen. This was the beginning of my anxiety starting to creep in. All those things hooked to me and alarms going off frayed my nerves completely.

I had a JP drain that they would check every few hours and after a few days that stopped working as well and I started soaking through my dressing which was gross and uncomfortable. One of my nurses stripped the drain for me, but it never worked as well after that.

Most of my days in the hospital consisted of a doctor visit and the nurse and aid introducing themselves to me. The first day I hit my pain button every half hour or so, I didn't want the pain to get ahead of me. The next day every 45 minutes or hour. After that I didn't hit my pain button much at all. Either the Dilaudid or the anesthesia (probably the latter) made me all itchy. When I told them about that they said they would give me Benadryl. I requested to be given that in the evening, because it puts me to sleep. That night they gave me a dose and within seconds my head was swimming. I felt like I was going to pass out. In an effort to stay conscious I was futzing around on my laptop. Well I didn't know it, but typing was setting off my oxygen (I thought it was the Benadryl) so I start freaking out even more. When my mom pointed out that the machine went off when I typed, I calmed down a bit. The nurse asked if I'd ever had panic attacks. Then she told me to not fight the Benadryl and I tried to go to sleep. Whew!

The second day was my best day in the hospital I think. After that I tried reducing my pain button usage and getting around was a little more "rough," although I managed. I was supposed to walk at least twice a day. I had these things around my legs, I called them water wings. They filled with air at intervals to help the blood go back up my legs and prevent a blood clot. These were the biggest obstacle to being independent in getting out of bed and walking around. After my second or so trip to the bathroom I asked my nurse or aid to show me how to detach everything so I wouldn't have to call them.

I tried the chewing gum trick but I don't think it helped me. My stomach was slow to wake up and I hadn't really had a "real" bowel movement by the time I went home. The first few days I was kept on fluids from the IV and allowed to eat ice chips only. I loved my ice chips. Then one day I was allowed to have soup and juice. Oh nectar of the Gods! That soup would make me gag normally (vegetable medley). My doctor told me she would change my protocol to solid foods but SHE DIDN'T and then they couldn't get a hold of her so I was kept on liquids. Boo!

Eventually I met my milestones and was cleared to go home. We waited quite a while for the doctor to visit me (not my surgeon, but he had been in my surgery). There was a sign on the wall that said, "We strive to discharge patients by 11 a.m." But the docs don't care. Haha. He told me I could go home so my nurse came to remove my staples and drain. She told me to hit my pain button. She removed the drain which was really painful but so quick. Then she overrode my pain protocol so I could hit my pain button again. She removed my tape. This was actually the most painful part. Not because the tape hurt, but because it tickled, and my muscles would twitch/contract and that was excruciating! The staples came out fairly uneventfully (although I think she missed one). I didn't even feel her take out my IV. She put Steri-Strips over my incision and told me to let them fall off naturally and trim the ends if they curled up. So far most of them are still whole and still on (a week later). She put a big ole piece of gauze over where the drain was removed and a clear plastic window over that. She told me to leave that for three days.

The clear plastic thing was supposed to be water proof but it would leak after I took a shower. I was really glad when I got to take that off. My first day home I tried not to use my muscles too much. I only took two Dilaudid after being let out of the hospital. I don't really have any pain "at rest" and the pain when I'm active is really pretty minimal. Honestly aside from what I described as specifically painful, the pain of the whole ordeal was considerably less than what I had been in. It makes me feel like I really should have been on pain medication a loooooong time ago. I just hate it and I think I become addicted easily (by this I mean I am addicted to caffeine), so I try not to take it.

I am doing pretty well now. I saw my GI and he thinks I am healing well. I hope I haven't forgotten anything. If you have any questions about my experience please feel free to ask. Sorry I switch tense at least once back there, I know it's jarring.


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## DustyKat

Thanks for putting that down hun. I have no doubt it will helpful to many, many people here...:thumleft:

Death to the catheter!...:voodoo:. Matt hated his and couldn't wait till it was out either. I think it was the thing that bothered him the most. Sarah's blocked when she was in ICU and they kept pumping the fluids into her thinking she was dry. I asked them if it was blocked and they said no, so I said it won't work to check, and sure enough it was. 

The A in PCA is for Analgesia. 

Dusty. xxx


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## tiloah

I can't remember what day (maybe day 2?) but they told me my doc had ordered that I be put on blood thinners. I was not a fan of this idea. They said they would wait until that evening. I was concerned about intestinal bleeding. I also didn't like that my doc hadn't talked about it with me before ordering it.


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## tiloah

DustyKat said:


> Thanks for putting that down hun. I have no doubt it will helpful to many, many people here...:thumleft:
> 
> Death to the catheter!...:voodoo. Matt hated his and couldn't wait till it was out either. I think it was the thing that bothered him the most. Sarah's blocked when she was in ICU and they kept pumping the fluids into her thinking she was dry. I asked them if it was blocked and they said no, so I said it won't work to check, and sure enough it was.
> 
> The A in PCA is for Analgesia.
> 
> Dusty. xxx


That annoys me so much! I had to pee so freaking bad! I really think that was the worst/most painful part of the whole ordeal. I was so happy when it was gone.

And because you're hooked to an IV you have to pee so much more. AUGH.


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## AndiGirl

Hi Nicole and welcome back!  I can totally relate to your distaste for the catheter.  I hate them!  They hurt and are so dang uncomfortable.  It sounds like you've had quite an ordeal.  

I am no fan of narcotic either.  I've been under terrible pain where I had to take them, but if I can ride it out, I'll do that.  Most of them upset my already upset stomach.  Let's see, will I choose pain or puking?  Ugh!  My father had both of his knees replaced several years ago; at the same time.  He was on narcotics for a while.  He had some issues with anxiety and paranoia.  They switched his painkillers and he did okay.  Can they try another narcotic, or pain med.?  

You are still in my prayers, sweetie.  Hang in there dear friend!


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## tiloah

AndiGirl said:


> Let's see, will I choose pain or puking?  Ugh!  My father had both of his knees replaced several years ago; at the same time.  He was on narcotics for a while.  He had some issues with anxiety and paranoia.  They switched his painkillers and he did okay.  Can they try another narcotic, or pain med.?
> 
> You are still in my prayers, sweetie.  Hang in there dear friend!


This, exactly! I will take pain over puking every time! Although before the surgery the puking was because of the pain.

I had my wisdom teeth out a few years ago and they tried two different types of pain meds but they both made me sick, so I just ended up not taking them. I wonder if it was the Dilaudid making my anxiety worse. I will have to make a note of that if I ever have to take it again. I imagine it will be my go to drug if I ever have another surgery because I know it doesn't make me sick.


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## DustyKat

It is pretty stock standard when you have had surgery, or are pretty immobile, to jab you with Clexane (blood thinner) twice day and pop the lovely TED stockings on you. Matt managed to avoid the jab in the local hospital and got away with the stockings only. In Sydney he was stuck with both. When we were there in January I had to convince them he didn't need the jab in the last week, hell we were out and about all day! 

Hope your recovery is going well hun...:hug:

Much love, :Karl:
Dusty. xxxxxxxx


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## Grumbletum

Thanks for posting this, Diesandhur. You can read about procedures on the Net etc, but you don't get the same detail and things you really want to know from the clinical versions. Can I ask you what a JP drain is?
it's great to have you back. Take it easy and heal soon. xxx


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## tiloah

The JP drain is like a little bulb attached to a long plastic tube. There is like a long rubber paddle that is inside of you that the tube attaches to. You can google pictures of it. The suction of the bulb pulls the serosanguinous fluid out of your wound area... in theory. This is nice because they can keep the fluid out of your body and also they can measure how much fluid there is and whether it's decreasing. It's probably also good because they can tell if the fluid changes at all (in case of infection or something).

I just remembered that my first day in the hospital the drain wasn't attached to anything. So when I went for a walk it was just swinging freely and hanging from the site... it might have been after that that I started needing dressing changes. So if you end up with a drain make sure they pin it to your gown!


----------



## DustyKat

diesanduhr said:


> I just remembered that my first day in the hospital the drain wasn't attached to anything. So when I went for a walk it was just swinging freely and hanging from the site... it might have been after that that I started needing dressing changes. So if you end up with a drain make sure they pin it to your gown!


*OUCH!!!*

Matt's had quite a long tube before the bulb and a hanger on the bag so we were able to hang it from the IV pole when he was walking.

Dusty. xxx


----------



## tiloah

A couple things I forgot. They gave me a "breathing machine," (an incentive spirometer) to keep me from getting pneumonia. I was told to use it ten times every two hours. Basically you take a slow, big deep breath and as you breathe a little piece of plastic floats in a chamber. Your goal is to keep the piece of plastic floating (within the margins) for as long as you can. I have no pneumonia to report so I guess it did its job.

Also the tape where my IV was irritated my skin pretty bad. It is just today (almost two weeks later) looking like it's healing. The skin was red and scaly and VERY itchy. I put lotion on it regularly.

I saw the surgeon yesterday. She took my staples out (I had three left). My stomach is now free of all bandages. She says to put a dressing over my incision if I'm going to be wearing pants that will cover/irritate that area. The appointment was quick. She gave me my pathology report (will post that later) and then took my staples out. I asked a couple questions and that was basically it.

She says I could probably roller skate now if I wanted to. Nothing too aggressive. In two more weeks some jogging and stationary bike. Seven more weeks before contact, I believe.

She actually removed about 6" less than they had predicted, so that's pretty cool. I had 18 cm (7") removed.


----------



## Astra

Thanks Nicole for posting your journey, I'm sure it's gonna help some peeps facing surgery in the future.
Hope you're resting and chillin, and recovering well
Take it easy
xxx


----------



## DustyKat

Excellent news!!! It's great to know you ended up with less being taken out than you thought! YAY! 

I hope your recovery continues to go fabulously well hun...:hug:

Onward and Upward, :thumleft:
Dusty. xxx


----------



## ameslouise

Hey Nicole - just checking in to see how your surgery went! Glad all went well you and you are on the road to recovery.  Remember to take it easy and get plenty of rest, don't push yourself too hard too fast!!!

I had the same issue with the catheter - worst pain of my life!!!

And the JP drain.... didn't it hurt like an MF when they took it out??!  Yowza!

Take care of yourself!!  xo - Ames


----------



## AndiGirl

Hi Nicole!  It sounds like you're feeling better.  Were you able to find a pain killer that was moe agreeable?  Hopefully the pain is going away.  Please take it easy.  Even if you feel a lot better, it's better to heal completely.  Hugs to you!


----------



## tiloah

I am getting really sick of how often I have to go to the bathroom now. I am really hoping this is just a period of adjustment rather than an indicator of how life is going to be from now on. And of course I'm stubborn as hell, so I don't go to the bathroom right when my body tells me to, which leads to accidents... *deep sigh*

My doc told me BeneFiber would help with this. Does anybody else have some remedies that might make this better? I've never really taken anything to prevent D. Maybe I should restart my Dilaudid to constipate me (this is a joke!). Hehehe. I know my friend used to to take tincture of opium, but she said it tasted nasty. Any thoughts? I will go digging on the forum for what people use.


----------



## tiloah

AndiGirl said:


> Hi Nicole!  It sounds like you're feeling better.  Were you able to find a pain killer that was moe agreeable?  Hopefully the pain is going away.  Please take it easy.  Even if you feel a lot better, it's better to heal completely.  Hugs to you!


In retrospect, I am guessing that the itchiness was a delayed reaction to the anesthesia. Dilaudid and I are going to be BFFs I think (when I need it, of course).


----------



## Keona

I can really relate to the annoyance of how much you have to pee when on an IV.  And the Dilaudid... it did make me feel anxious in higher doses (when it was wearing off).  

Glad to see you on here Nicole writing and expressing your experience.  Hope you recover quickly

xo


----------



## Karissa

The catheter! I had that problem too! It hurt like hell and I kept complaining about it and they wouldn't believe me! This also always seemed to happen at night when there were less nurses on the floor, of course. That was awful. I think I blocked that out actually.

I'm so glad that you are doing so well! Thanks for sharing! It's good that you wrote it out while it's still fresh in your mind. All of those tiny details will really help a lot of people. Just think, the worst part's over!

-Karissa


----------



## DustyKat

Sarah was prescribed Questran. She found it very unpalatable, it is a powder, but I know many people here have success with it and it did actually work for her. I think BeneFibre is psyllium, is that right? Sarah also tried something similar called Metamucil but that caused her pain and cramping, I always thought it may have had something to do with it being being a commercially prepared product IYKWIM, however natural psyllium husks proved to be perfect. 

Sarah has short bowel syndrome but Matt had much less bowel taken out and he is also experiencing diarrhoea, about 4-5 times a day. His pattern is very different to Sarah's and he is still taking Flagyl as well. I am hoping that over time this will settle but his surgeon did note on the letter of review that if it continued Questran may be helpful. 

Dusty. xxx


----------



## archie

I found the big D settled quickly esp after I started eating fruit and veg again after 6 weeks.  My pathology report came back with a carcinoid tumour on the appendix which frecked me out a lot, but have been assured by 3 of the consultants that it was tiny and absolutely nothing to worry about, completely insignificant and could've had it my whole life without knowing, that said i'm glad it's out all the same!!! apart from that it was definitely crohn's... hope your recovering well x


----------



## tiloah

DustyKat said:


> Sarah was prescribed Questran. She found it very unpalatable, it is a powder, but I know many people here have success with it and it did actually work for her. I think BeneFibre is psyllium, is that right? Sarah also tried something similar called Metamucil but that caused her pain and cramping, I always thought it may have had something to do with it being being a commercially prepared product IYKWIM, however natural psyllium husks proved to be perfect.
> 
> Sarah has short bowel syndrome but Matt had much less bowel taken out and he is also experiencing diarrhoea, about 4-5 times a day. His pattern is very different to Sarah's and he is still taking Flagyl as well. I am hoping that over time this will settle but his surgeon did note on the letter of review that if it continued Questran may be helpful.
> 
> Dusty. xxx


Yes, I know what you mean. Thanks for the reviews... 

I am hoping the D will settle soon. It's definitely getting on my nerves. I am wondering if maybe the antibiotics gave me C. diff again and was thinking about asking my GI to do a stool culture, just to make sure. But I figured I should give it some time to see if I'm just adjusting.


----------



## bruscar

Hey Diesanduhr,

Sorry this is like weeks late.

Anyway, i am delighted to see that you are on the mend.

Lots of hugs etc and keep up the great progress.

Regards

Bruscar


----------



## tiloah

Karissa said:


> The catheter! I had that problem too! It hurt like hell and I kept complaining about it and they wouldn't believe me! This also always seemed to happen at night when there were less nurses on the floor, of course. That was awful. I think I blocked that out actually.
> 
> I'm so glad that you are doing so well! Thanks for sharing! It's good that you wrote it out while it's still fresh in your mind. All of those tiny details will really help a lot of people. Just think, the worst part's over!
> 
> -Karissa


Augh, why don't they believe you! Every time I would tell them it wasn't draining, they would look at the bag and declare that it was working fine. I was like, NO that's the pee from the last time you people fiddled with it! :ymad:

I must admit I am happy I'm not the only one this has happened to. They made me feel crazy like it wasn't possible for it to not be draining.


----------



## hawkeye

diesanduhr

Glad to hear your recovery is progessing and you are on the mend.

Mark


----------



## tiloah

Feeling faint/like I'm gonna faint. Not sure which doctor to go to/call?


----------



## LOSTnut

In a case like this I used to call all of them just because I didn't know where it came from and could be the responsibility of either one. 

And, sometimes it just takes too long for one of them to respond back.


----------



## Terriernut

diesanduhr said:


> Feeling faint/like I'm gonna faint. Not sure which doctor to go to/call?


Honey, call emergency if you're feeling that bad.  Have you been drinking enough water?  Really, if you're alone, call for an ambulance or get a neighbor to take you to ER

Hope you feel better soon!!!!


----------



## tiloah

Terriernut said:


> Honey, call emergency if you're feeling that bad.  Have you been drinking enough water?  Really, if you're alone, call for an ambulance or get a neighbor to take you to ER
> 
> Hope you feel better soon!!!!


I'm at work... I have been feeling vaguely light headed/nauseous for about a week. Just today did I have that feeling like I'm going to faint. I have been eating and drinking more since I started having this feeling. Although today I'm wondering if it's just my anxiety getting out of control. If it happens again I will definitely do something about it.

My best guess is either anxiety or anemia for some reason.


----------



## Terriernut

Need to let the Dr's know.  It may not be your anxiety.  
oh here comes again, sorry HUUUUUUUUUUUUUUGGGGGGGGGGGGGGGGSSSSSSSSSSSSSSSSSSSSSSSSS.
It gets away from me sometimes.

:kiss:


----------



## LOSTnut

You are at work?? 

Didn't you just have surgery?


----------



## tiloah

Thanks. 

I don't mean to worry anyone. I don't think it's super serious but you're right, I should call the docs and get it straightened out. I had been hoping I could wait either 'til the 26th (I see my surgeon) or a couple months 'til my routine blood draws. 

I feel silly calling my GI. I'm worried they will be like "and why are you calling US about this?"


----------



## tiloah

I had surgery on the 15th of last month. I went back to work after about two weeks. I am lucky to have a sedentary job!


----------



## Terriernut

Perhaps two weeks was a bit premature?  Dr's do need to know what is happening luv.  You shouldnt wait, and they wont think badly of you, believe me.  

I'm surprised they agreed to let you go back so soon.  You're body sounds to me like its trying to tell you something, and you need to listen to it.
oh oh...huuuuuuuuuuuuuuuuuuugggggggggggggsssssssssssssssssssssss,
and please ring the dr right now, cause if you dont, I'm harrassing you with hugs!  So there!


----------



## LOSTnut

No, no, no -- you better call them all. You just had surgery and you don't wait around .. better a false alarm than keeling over and being back in the hospital.


----------



## LOSTnut

YEAH!

Listen to Misty!


----------



## tiloah

Lol, ok. Message received. GI and surgeon? Or GI, surgeon, and GP? I don't really have a relationship with my GP.


----------



## tiloah

Terriernut said:


> Perhaps two weeks was a bit premature?  Dr's do need to know what is happening luv.  You shouldnt wait, and they wont think badly of you, believe me.
> 
> I'm surprised they agreed to let you go back so soon.  You're body sounds to me like its trying to tell you something, and you need to listen to it.
> oh oh...huuuuuuuuuuuuuuuuuuugggggggggggggsssssssssssssssssssssss,
> and please ring the dr right now, cause if you dont, I'm harrassing you with hugs!  So there!


She told me yesterday I was allowed to get back to jogging, which I was pretty stoked about.


----------



## Terriernut

GP, and GI, AND surgeon.  Even no relationship to GP, they should get you in.  Explain to reception you've just had major surgery and how you feel.  Do you have a fever by the way?


----------



## LOSTnut

YEAH!

Listen to Misty!


----------



## Terriernut

Yup, your insides didnt get shaken up enough.  Are they trying to make a martini outta you? 

Hows the boob by the way?  Behaving itself? :rof:


----------



## tiloah

Terriernut said:


> Yup, your insides didnt get shaken up enough.  Are they trying to make a martini outta you?
> 
> Hows the boob by the way?  Behaving itself? :rof:


Hey she said at 8 weeks I was fine to go back to ROLLER DERBY. 

Boobs are good. :rof:


----------



## Terriernut

Nutter!!!  I mean that in the nicest way!!!  :kiss:


----------



## LOSTnut

Terriernut said:


> Are they trying to make a martini outta you?  :rof:


Loving that one!  

Roller Derby??? :ywow:


----------



## tiloah

I don't feel feverish, but I don't have a thermometer on me. Usually I can tell if I'm having a fever before my temp. even goes up though.


----------



## Grumbletum

2 weeks?? I thought it was 6 weeks off for major stomach surgery.  Even a sedentary job can take it out of you. I think I'd call the doc I trusted most first. Hope it's nothing too serious


----------



## tiloah

GI called. No appointments today. Might see him tomorrow. Waiting for call back from surgeon. Starting to freak out a little? She said the faintness is "concerning," especially since I don't think I'm dehydrated. Asked if I thought this warranted a trip to the ER... Don't know what to do!? Eeep.


----------



## LOSTnut

Could some pain killers cause the fainting feeling? Are you still taking pain killers?

What did she say about the ER? It is definitely something to think about especially if you live and be alone after work.


----------



## tiloah

LOSTnut said:


> Could some pain killers cause the fainting feeling? Are you still taking pain killers?
> 
> What did she say about the ER? It is definitely something to think about especially if you live and be alone after work.


My plan right now is to wait for my surgeon to call back... if I don't hear from them I'll head to the ER. I work two blocks from the hospital so I think I'll be ok until I'm off.


----------



## DustyKat

How often are you having bloods drawn?

When were you last tested for B12, Folate and Iron Stores? 

Dusty. xxx


----------



## tiloah

DustyKat said:


> How often are you having bloods drawn?
> 
> When were you last tested for B12, Folate and Iron Stores?
> 
> Dusty. xxx


I had to specifically request the B12 before the surgery, I think a couple months before. It was "slightly low," but they didn't feel the need to do anything about it. Not sure about the others, are they routine? My last bloods were before the surgery.

Yesterday was my last day of the "every other day" of Prednisone. I wasn't very compliant with it (I kept leaving the pills somewhere or forgetting to take them) so it was more like 5 mg every three days. I stopped my propranolol a couple of days ago in case that was the cause. Other than that not on meds.


----------



## DustyKat

You will have to request them. I would ring the GP and get a request form, do all the baseline and get him/her to add those plus your inflammatory markers. 

I view of the fact that your B12 was already low the surgery you have had is not going to improve it. It may also be an indicator that the others are affected as well. 

I would have bloods drawn monthly at this point and B12 is something that should be monitored if you aren't receiving or don't require supplements. 

Why are you on Propranolol? If these symptoms have persisted whilst off it perhaps you should recommence taking it. 

Dusty. xxx


----------



## tiloah

I take propranolol to prevent migraines. I'm doomed to have migraines in the next few days because I'm going to start menstruating soon, so it's alright to stop it for a bit.


----------



## DustyKat

Migraines suck...:voodoo:

Are you feeling any better? 

Dusty. xxx


----------



## Mountaingem

LOSTnut said:


> In a case like this I used to call all of them just because I didn't know where it came from and could be the responsibility of either one.
> 
> And, sometimes it just takes too long for one of them to respond back.


I agree-give everyone a call. Sending hugs and get well wishes!:hug:


----------



## tiloah

Surgeon's office called. They say it's not surgery related. They say when someone calls with these symptoms it's usually blood sugar, ear infection, or blood pressure. They said to get an appointment with my GP and not to go to the ER.  I still think a deficiency/anemia or anxiety is the culprit.

I am fairly certain it's not blood sugar. I have been sipping on a soda all day and making sure to eat while this has been going on. Ear infection is possible, as is blood pressure. I will check my BP at the store before I go home.

I am reassured!

Edit - Called GP. Despite the nurse making me feel like I was wasting her time, I have an appointment with them in 1.5 hours.

Is it a sad day when you know you will get better, cheaper, and faster care by NOT going to the ER?


----------



## Grumbletum

Whew! Glad to hear it's not surgery related and that you're seeing someone soon. Might be an idea to take a few days off and rest up? Nag! Nag!


----------



## LOSTnut

Grumbletum said:


> Whew! Glad to hear it's not surgery related and that you're seeing someone soon. Might be an idea to take a few days off and rest up? Nag! Nag!


I agree with that statement. Probably too much too soon and I am also glad you get to see the doc soon. At least they know what you've been through, well at least hopefully. Mine are all kinda in the loop with each other, which helps a lot to get answers faster


----------



## tiloah

Saw the GP. He thinks that I am just "out of fuel." He told me to drink more Gatorade and less water and soda, eat crackers and cheese and apples with peanut butter (like on a day to day basis). Referral to a nutritionist. I don't really believe it's possible for me to be dehydrated, I drink compulsively and my piss is clear. Whatevs. But needing to eat more/better makes sense. I was living off of nothing/Ensure before the surgery, and I have been having trouble introducing varied foods since. So hopefully that's all I need to do and I'll be feeling better soon.

Also had an EKG and blood draws to check. Thanks for the hugegantic bruise phlebotomist lady. :voodoo:


----------



## tiloah

Thanks for all the advice everybody. Knowing me I would have let it go until I actually did pass out.


----------



## tiloah

Oh and he said I'm not allowed to jog until my "nutrition is on track."


----------



## DustyKat

So great to hear it's not surgery related! 

I hope the tests do show something so you can get on top of it...but that it is also easily treated!

Good luck, :hug:
Dusty. xxx


----------



## LOSTnut

Good to hear that you have a course of action that will bring your overall constitution back to normal. 
Try some protein shakes ... I loved them and they are loaded with the good stuff and you add the stuff that you like. Waaaaayyyyy better than Ensure!!


----------



## tiloah

Bleh. Still feeling dizzy. Blood work back already, "Everything's normal." Also yesterday he told me to hold off on the propranolol for a while.


----------



## Terriernut

Dont cyber slap me, but I really think you need to take a week of 'me' time on the sofa and taking care of yourself.  I'd happily come and help, but I think you're a bit far!


----------



## LOSTnut

YEAH!!

Listen to Misty!


----------



## tiloah

You guys crack me up! Well, they did just reopen the "spa" where I live...

:ghug:


----------



## Terriernut

Perfect!  Enjoy a week of pampering!


----------



## Grumbletum

And no jogging!! Protein shakes, yeah, but that kind of shakin goin on might not be such a good idea for a few more weeks. Nag! Nag! Nag! :ylol2:


----------



## tiloah

Hrm. Well I felt silly but I asked for today and yesterday off. It paid off because I had a migraine yesterday and am getting one now. Today I was able to finish a big project I had been working on, so that's nice.

Still dizzy. Today I went to the bathroom and there was a lot of blood in the toilet including two blood clots. This is not a typical symptom for me but it does happen once in a blue moon. My doc had asked about rectal bleeding when I saw him and I said no, is it possible it just took a while to show up? Or is this probably just coincidental? Bleeding would have shown up as the problem on my CBC, right?


----------



## Grumbletum

Maybe some blood left over from the surgery? Glad you took some time off   Dizzy and migraines, hmmm. Have you had a cold? Might be inner ear problem?


----------



## DustyKat

Are they similar in size and appearance to what you have had before? They are bowel and not vaginal? 

If it has been ongoing problem it should show up in your CBC. I would imagine if it was problematic you should be showing signs of anaemia on your FBC. 

Good to hear you have had some time off and I hope you can get to the bottom things soon! 

Good luck hun! 
Dusty. xxxxxxxx


----------



## AndiGirl

I agree, Nicole; rest up and make sure things are okay.  Take the time you need.  Hugs!


----------



## archie

Hiya, I'm just catching up on your thread now after a blissful week in the sun!!!   it was well needed although the over indulging and extra vino has upset the plumbing a bit...

It took me 6 weeks post surgery to feel 'normal' again I had wee spells of mild dizzyness etc and still do.  2 weeks post surgery is still the recovery stage and your body is coping from major surgery so it's prob warning you to still take easy.  Everyone said to me don't do to much which of course I didn't do as i'm stubborn then bang I got the worst migrane i've ever had couldn't see properly the works and it lasted about 3 days, it also coincided with me stopping the pred so not sure what caused it.  Although I feel great since the surgery I still have my off days, of fatigue, nausea, sore tummy etc I also had an episode of rectal bleeding, which lasted about 2 months, however I saw the surgeon who had a wee look (delightful!!) and assured me it was nothing to worry about. Regardless I'm booked in for a gastroscope and colonoscopy on thursday. yeah!! 

Anyways on a brighter note I am now able to run without any adverse effects except i'm just getting old and struggling a bit more than usual, oh and he checked my bloods and they were all normal so I really do have to blame my tiredness on old age!!!. Listen to your body if you need to rest then do and I hope it settle soon


----------



## tiloah

Thanks so much for your response. I am four weeks postop and this started happening about a week ago. It's constant now and I hate it. I'm getting seriously depressed. Feels like I'm just never gonna be normal. I don't really buy the nutrition explanation and if it's an inner ear problem then it's probably something they can't fix.

I just want to feel normal (or even good) for a little while and I wish that wasn't too much to ask. Sorry, I'm just feeling really down right now.


----------



## AndiGirl

Sometimes the doctors can give you something for inner ear problems, please don't rule that out. Both of my parents are deaf in one ear, and it happens to be the right ear on both.  My mom had horrible problems with dizziness and ringing.  She claims that they gave her something that helped with the dizziness.  I'll have to ask her what it was.  

As for feeling down, vent away.  Surgery and recovery bring out the worst in our emotional state of being.  We are here for you Nicole.


----------



## tiloah

Bleh! My period is over a week late today (and no, there's no way I'm pregnant) so my body is just really confused/shocked. My joints are hurting like crazy so maybe my body is having a hard time getting off the Prednisone?

I know my BP has been low since the surgery and going off of Pred can lower it even more. Also dizziness is a symptom of Pred withdrawal. My body is in general very sensitive to meds.

Can you tell it drives me crazy to just not know WHY? XP


----------



## DustyKat

I was going to ask about your BP. Are you still taking the Propranolol? Maybe this is exacerbating the problem??

Dusty. xxx


----------



## tiloah

No, stopped the propranolol, and the GP told me to hold off when I mentioned it.


----------



## DustyKat

Do you think it may be time to start taking something to bring the diarrhoea under control? 

Dusty. xxx


----------



## Grumbletum

I forgot you were coming off the Pred. I got migraines too last time I was tapering and felt generally bleh! Yep, not knowing is infuriating. You've been through such a big physical and emotional upheaval, it's bound to take a bit of time to recover.
Hang in there and hope you start feeling better soon. Big hugs x


----------



## LOSTnut

I am sorry to hear that all this is getting you so down ... but it definitely is understandable. 
Just relax, take it one day at a time and be assured it will go away and you will feel good! 
And, don't be shy to take something for the depression. After all, such a surgery has a major impact on your life and it is hard to deal with the difficulties. 

It will get better!   

Hugs!


----------



## tiloah

I'm feeling better today. Thanks for all your thoughts. I think I just needed to blow off some steam about it. I'm sure being emotional is another one of the effects of everything going on.

:ghug:


----------



## ameslouise

Hi Nicole - Just checking in to see how things are going. Sorry you've been having a rough time of it lately.  Give yourself a little more time, you're still really fresh from the operating table!!  I'm four months post-op and really just got my energy back and started feeling normal again about two or three weeks ago! Better to take it easy and not push too hard - you don't want to have a set back!!

Glad today was better, hopefully each day gets even better yet.

xo - Ames


----------



## jenz

This is the same surgery that I will be having on Friday, it will be my first. The way my surgeon described what was going to be done I just figured it would be called a resection but when I had the papers today to sign at my pre admission testing it said robotic right colectomy and I kinda freaked out! lol I knew it was going to be done with the help of the robot but the name of it made me automatically think of getting stuck with a bag in some way but after getting home and reading your post I realize that I am having the same thing as a resection lol So thank you very much for posting your experience! :thumright: Anyway I was just wondering how long your surgery took? I forgot to ask and now realize that it would be nice to know an estimate on how long the surgery will take. lol


----------



## tiloah

My surgery was supposed to take two hours, but it took two and a half. I'm not sure if a robot would mean more or less time!


----------



## archie

Don't worry I didn't know colectomy was a resection either.  Mine was 3 1/2 hrs I didn't have any fancy robots though!!! good luck jenz.  RU feeling any better diesanduhr??


----------



## tiloah

I just remembered something and I want to document it. When I woke up from my surgery I wanted to talk to people but it was really difficult - it took a lot of effort. I presume this was because of the tube they put down your throat while they operate. It was easier for me to write what I wanted to say than to speak. This went away by the second day, but it was frustrating.


----------



## tiloah

Holy dukes. Yesterday I went skating and the arthritis set in like nobody's business. I could barely walk by the end of the night. Had to quit halfway through. When I went to bed it was excruciating and it took me 10 minutes to be able to bear lifting my legs into the bed and pulling the blanket over myself. I ended up taking a Dilaudid. I have never had pain like that before! It seemed like every single joint in my body was inflamed. Even simple stuff like pulling the sleeves up on my sweater I had to ask my friend to do for me, it was too painful. Yesterday was the last 5 mg. I had been doing 5 mg every other day for two weeks and it has been painful the entire time. Hoping my brain starts to catch up soon.


----------



## Terriernut

The last 5mg of pred??  

My word, that sounds horrible!  How are you feeling today?  I sure hope you were able to sleep.
:rosette2:


----------



## tiloah

Terriernut said:


> The last 5mg of pred??
> 
> My word, that sounds horrible!  How are you feeling today?  I sure hope you were able to sleep.
> :rosette2:


Thanks. Pred is such a bully. 

My joints still hurt but nothing like the other day, thankfully.


----------



## Terriernut

I wish I could wave a magic wand and make you ALL BETTER!!!

So long to the pred, and hello to everyday getting better for you!!!

:hug:


----------



## tiloah

New record for me. Ate a bagel sandwich at 11:30, now it's 2:30 and that lettuce is in the toilet.

Joints are still hurting, but it's manageable. Going to bring it up with the GI next time I see him.


----------



## DustyKat

When do you see the GI? 

You aren't on maintenance meds are you? 

Perhaps some bloods and a visit sooner rather than later may be in order? 

Thinking of you...:hug:
Dusty. xxx


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## tiloah

The GI visit is September 16. I've had loose BMs since surgery, my surgeon told me not to worry about it (or the mucus). I am more concerned about the joint pain and that inflammation might be coming back to the back of my neck (which I haven't had since I started Humira).

I'm not too worried, I think the 16th will be fine. And no, right now I'm not on maintenance meds.


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## DustyKat

If you're happy I'm happy or less worried any way! :lol:

I hope things settle or at least don't get any worse until then! 

Take care mate, :hug:
Dusty. xxx


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## tiloah

Yep. My doc told me to try Benefiber. I think it worked a little but it gave me terrible gas/pain/bloating so I don't like taking it. I've yet to try anything else.


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## DustyKat

Sarah experienced the same issues with commercially prepared psyllium products. 

Questran (prescribed medicaton) worked but she found it too unpalatable, turns out natural psyllium husks work well without side effects.

Dusty. xxx


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## tiloah

The only ingredient in Benefiber is wheat dextrin. I've been meaning to try psyllium, just haven't bought it yet. I wanted to give the Benefiber a second chance (introducing it even slower) but it still gave me a stomachache.


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## tiloah

diesanduhr said:


> The GI visit is September 16. I've had loose BMs since surgery, my surgeon told me not to worry about it (or the mucus). I am more concerned about the joint pain and that inflammation might be coming back to the back of my neck (which I haven't had since I started Humira).


The inflammation on the back of my neck has definitely been worsening since I went off the Humira. I have to think if my skin is this inflamed, what's happening in my guts. This strengthens my belief that I need to be on maintenance meds.


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## DustyKat

Have you had bloods drawn lately to check your inflammatory markers and B12, Iron, Vit D etc lately? 

I believe in maintenance meds and think you may well need them too. 

Dusty. xxx


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## tiloah

I don't think my inflammatory markers have ever been elevated (even when I had that crazy abscess and needed surgery). They always tell me my bloods are "normal" (although almost all of my blood tests have low albumin).

I have a follow-up for my colonoscopy next week and I'm going to ask my GI about the skin inflammation as well as explain that I'm not really comfortable not being on a maintenance med.


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## Terriernut

I would hope your scope comes out clear.  I can certainly understand why you would want to be on maintenance meds.  I think you are being pro active and thats a good thing!


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## Crohn's 35

Good luck with your scope!  I am sure you know all about them. What is your prep of choice?  Your Gi should have some answers for ya, let us know what he/she says.  We are here for ya!


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## tiloah

Terriernut said:


> I would hope your scope comes out clear.  I can certainly understand why you would want to be on maintenance meds.  I think you are being pro active and thats a good thing!


My doc said the scope was clear, however there was an "erosion" near the surgical site that concerns me. I will see what he says/what the biospy results were next week.


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## tiloah

The scope thankfully was a couple weeks ago (the 15th). Exactly six months after my surgery!


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## Terriernut

diesanduhr said:


> My doc said the scope was clear, however there was an "erosion" near the surgical site that concerns me. I will see what he says/what the biospy results were next week.


All digits crossed.  And that he listens to your concerns.  You are a lovely lady, and you I want you to stay well!
:heart:


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## Crohn's 35

diesanduhr said:


> The scope thankfully was a couple weeks ago (the 15th). Exactly six months after my surgery!


Ugh sorry I was late and didnt see the date.  :yfaint:


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## DustyKat

diesanduhr said:


> My doc said the scope was clear, however there was an "erosion" near the surgical site that concerns me. I will see what he says/what the biospy results were next week.


That is usually where disease will start to show up again, proximal to the anastomosis if you have Ileal Crohn's. 

A low albumin can be a feature of IBD and is generally present when you have acute or long standing inflammation. Either way I would be questioning the GI as to why you have a persistent low albumin. Perhaps this is more a marker for you than the inflammatory ones. 

Good luck with your appointment! 

Dusty. xxx


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## tiloah

Pen said:


> Ugh sorry I was late and didnt see the date.  :yfaint:


No worries! I don't think I had posted about the scope in this thread previously anyway.


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## tiloah

DustyKat said:


> That is usually where disease will start to show up again, proximal to the anastomosis if you have Ileal Crohn's.


Argh, yeah. I really *don't* think its' a coincidence, like my doc is trying to say it is. 




DustyKat said:


> A low albumin can be a feature of IBD and is generally present when you have acute or long standing inflammation. Either way I would be questioning the GI as to why you have a persistent low albumin. Perhaps this is more a marker for you than the inflammatory ones.
> 
> Good luck with your appointment!
> 
> Dusty. xxx


I figure it is either related to my IBD or just my chronic inability to eat enough protein. I'm a carb monster.


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## DustyKat

Unfortunately I'm thinking along the same lines as you Nic.  

Yeah, it could be diet related or maybe a bit of both??

Dusty. xxx


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## tiloah

Yeah, probably a bit of both. My GP's nurse told me I needed to "eat better" when my results came back. Upon googling that night I found low albumin is associated with Crohn's. Rude!


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## Terriernut

Nic....I'm cooking you a horrid english steak...tough as nails.

Now, picture a nice american filet mignon on your plate with a bit of bernaise sauce instead...

Surely you can manage a filet mignon?  You cookie monster you!!! :ylol:


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## tiloah

Ohhh steak yummm. I don't usually have as much trouble with sweets as starches. Potatoes are my favorite thing! Chips, fries, mashed, baked... And they are generally "easier", cheaper, and more portable than proteins, which is my greatest downfall. Whatever I can just open and eat is what I tend to go with. I sound like such a lazy bum.


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## Terriernut

Well, try a can of beans!!  Lots of protein..and your friends at work will LOVE you for it!!!


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## tiloah

No beans! Eeeuuggh.


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## Terriernut

Nic, what are we to do?!  Starches arent so good for gut bacteria and we need you well.

Spinach???  Nice steak, chicken, come stay with me and I'll cook for you??


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## tiloah

Biopsy results back: "No significant abnormalities. At this point I don't think you need any prescription medications for Crohn's disease."


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## tiloah

Terriernut said:


> Nic, what are we to do?!  Starches arent so good for gut bacteria and we need you well.
> 
> Spinach???  Nice steak, chicken, come stay with me and I'll cook for you??


This sounds wonderful. How do I book my stay?


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## Terriernut

No need for meds? Or no crohns??  :ywow:

You can come any time to stay!  But I'm not exactly in a tourist spot...


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## surfergirl32

diesanduhr---I see that you live in Washington.  Do you live in Washington state?  What city?


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## tiloah

Yes, I live in Washington State. I used to live all over western Washington (Woodinville, Redmond, Bothell, Renton...) but currently am on Whidbey Island. I went to school outside of Portland. I miss it tremendously.


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## madrona2452

I too live in wa. Where did you have your surgery done? I am having an ileocecectomy soon and am anxious about it and the post op pain. Thanks for sharing your experiences.


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## tiloah

I had mine done in Kirkland... at uhhhh Evergreen? I think. My surgeon was Marion Johnson and she was an absolute pleasure to work with. I highly recommend her.


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## madrona2452

Thanks. I'm having mine done at Virginia Mason and It's an open procedure so I'm a bit nervous about the post op pain. The experiences on here range from super great to really horrible, so I'm crossing my fingers


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## tiloah

Well I wish you the best of luck. I don't know how much pain you are in now, but I know for me recovering from surgery was a piece of cake in comparison.


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## tiloah

1.5 year surgery follow-up colonoscopy. Ulcerations in terminal ileum. Very likely no longer in remission. Meet with GI in April, plan is to go back on Humira.


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