I had surgery!

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AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 4/15/2008 8:42 AM (GMT -7)   
Hello Everyone,
 
I have not logged in for awhile and I wanted to just stop in and give an update. I had got really sick to the point I just couldn't do anything without vomitting. It was terrible and extremely painful. On March 26th I had my first Crohn's related surgery. I haven't really noticed any difference as of yet. Is it just me or is it possible that it could have made things worse? I can't tolerate dairy--mainly milk anymore and it never bothered me before. I know that it didn't put me into remission.. I have more diahrea now than i did before. Granted its only been 3 weeks but sheesh...is this ever going to get any better!! mad
Currently taking prednisone 40mg, Levoxyl 200mcg, Pentasa 500mg tablets 2 tabs 3 times daily, Ranitidine 300mg 1 tablet twice daily, Darvocet as needed for pain, GNC Women's UltraMega Bone Density vitamin, (Just started Remicade 1-31 given along side benadryl and something with a D)
Dr said with my ileum being so severe that the remicade will speed up me needing the surgery because of the scarring. :-(


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/15/2008 9:16 AM (GMT -7)   
Sorry to hear you had to have surgery. But believe it or not it will get better. It is very common to have alot of D after surgery, as it takes awhile for things to wake up per se. And you just had major surgery 3 weeks ago. I remember after my first surgery I was so surprised how bad I felt. And my sister who doesn't have Crohns told me to remember that 1) You just had major surgery, 2) And those docs were in there moving and cutting stuff, who wouldn't have some trauma.

Also, after my surgeries alot of things have changed for me. I too am now lactose intolerant, I stay pretty much on a low residue diet, and I no longer eat red meat as it is very hard to digest.

But things get better as you heal. In another 5-6 weeks I am sure you will be feeling alot better. Just take your time and don't overdo.

God Bless you,

Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/15/2008 9:26 AM (GMT -7)   
I haven't had surgery, so I can't offer any words of wisdom but I do want to wish you well! I hope you are feeling better soon...
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/15/2008 5:09 PM (GMT -7)   
Hi Amanda Hope your recovery is a good one. I had surgery in Jan and my BM's have been good they removed my TI too .Not everyone is the same I guess .I do stay on low roughage diet though and avoid nuts,seeds ,popcorn ,pickles, peppers, raw veggies and raw fruit . It seems to work good for me .Milk doesn't seem to bother me. I do get a B12 shot once a month. I did not do great on Rem. and on no meds right now. Wishing all the best for you and how is your strenth coming ?lol gail

AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 4/16/2008 6:26 AM (GMT -7)   
gachrons said...
Hi Amanda Hope your recovery is a good one. I had surgery in Jan and my BM's have been good they removed my TI too .Not everyone is the same I guess .I do stay on low roughage diet though and avoid nuts,seeds ,popcorn ,pickles, peppers, raw veggies and raw fruit . It seems to work good for me .Milk doesn't seem to bother me. I do get a B12 shot once a month. I did not do great on Rem. and on no meds right now. Wishing all the best for you and how is your strenth coming ?lol gail
I am also doing the low residue diet. The remicade doesn't seem to be helping me but they insist I stay on it. Milk never bothered me before and it kills me now. My strength is great. I had some pretty large sized holes after the surgery but that was it..its healing well though. It hurts to bend but I have been doing really well with that the surgery itself. I'm just bummed about the symptoms being so intense still.
Currently taking prednisone 40mg, Levoxyl 200mcg, Pentasa 500mg tablets 2 tabs 3 times daily, Ranitidine 300mg 1 tablet twice daily, Darvocet as needed for pain, GNC Women's UltraMega Bone Density vitamin, (Just started Remicade 1-31 given along side benadryl and something with a D)
Dr said with my ileum being so severe that the remicade will speed up me needing the surgery because of the scarring. :-(


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 4/16/2008 6:48 AM (GMT -7)   
Don't get discouraged just yet.  It is very common to have an increase in D after surgery.  I can't explain the lactose intollerance, but it may be temporary or not.  A lot of CDers are lactose intollerant so who knows why it is happening now. I hope you are feeling better soon.

Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ajz
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 4/16/2008 8:57 AM (GMT -7)   

Hi everyone,

I am new to the group, but can sympathize with all of you.  I am one week post-surgery. I had an ileo-cecal resection in which 12 inches of bowel was removed and 2 fistulas were repaired.  I have had Crohn's since I was 14 and this was my first surgery.  The stricturing was so bad that I couldn't avoid obstructing. 

 I know it is only one week, but I feel like I have been hit by a truck. I can eat and drink, but going to the bathroom can be an adventure.  I am so sore. I made the mistake of coughing over the weekend and was blinded by the pain.  I am walking around, but it doesn't take long to get tired and very sore. Getting very frustrated.  I just want some of the pain to ease up a little.  How long are people finding it takes to get some normal days ?  Is it really 4-6 weeks ?  Granted, it feels better than a crohn's flare, but it still hurts.

 

ajz

 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/16/2008 9:07 AM (GMT -7)   
I know for my 2 resections it took me a good 6 weeks to get feeling better. For both of my resections I was out for 8 weeks from work. Please just take it easy and allow your body to heal. AJZ you are really fresh from surgery so I am sure you are still at the feeling like you got hit by a semitruck. It will get better with time. Just rest and heal now.

God Bless
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


ajz
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 4/16/2008 9:25 AM (GMT -7)   

 

Thanks Nanners !!   I am trying. Its just so easy to freak out over every pain I feel.  I get so scared of what could be going on in there.  I can't wait for that magic morning when i wake up and feel like me.

ajz

 


AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 4/16/2008 12:39 PM (GMT -7)   
AJZ,

Truthfully..I wish I could say I sympathize with you about the surgery pain..honestly my CD was so bad that the pain from surgery was a walk in the park for me. The nurse and dr gave me a morphine pump and was complaining to me because I wasn't using it. I bluntly told them when your used to severe pain everyday this is nothing! I was up and walking after surgery..Granted I am very sore and laughing and sneezing absolutely stinks!!! It has been 3 weeks for me today since my surgery. I was really pushing myself I wanted to be home with my kids and husband. I thought my vomitting had stopped and last night I had an episode.. it wasn't like the obstruction vomitting I was getting before but its still depressing. The crohn's pain is there..and its yucky. I asked the dr..i thought the surgery would put me into "remission" he said that it doesn't always do that....well well well..why didn't you tell me this before the surgery my husband told me that before the surgery the dr told me that it would put me into remission at least for awhile...so when do CD patients get good news...do we ever? UGHHHHHH!

Angry, Frustrated...and hating crohn's disease!!!
Currently taking prednisone 40mg, Levoxyl 200mcg, Pentasa 500mg tablets 2 tabs 3 times daily, Ranitidine 300mg 1 tablet twice daily, Darvocet as needed for pain, GNC Women's UltraMega Bone Density vitamin, (Just started Remicade 1-31 given along side benadryl and something with a D)
Dr said with my ileum being so severe that the remicade will speed up me needing the surgery because of the scarring. :-(


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 4/16/2008 12:41 PM (GMT -7)   
I wanted to just wish you well!!!
karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 4/16/2008 2:17 PM (GMT -7)   
Hi Amanda,
I was wondering where you were, and missing your posts. I am so sorry you are having a hard recovery. Try not to lose hope...life has a way of turning around eventually. Are you getting help with your kids? I will be thinking of you and hoping for the best!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


ajz
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 4/16/2008 2:54 PM (GMT -7)   

 

Hi Amanda,

I hear ya. I was up walking the day after and got myself out of the hospital 4 days later.  I just wanted to be home with my girlfirend on my couch.  Roomates and the vital signs every 15 minutes don't allow for much sleep.   The post-op pain is just so intense. Very sore. They gave me oxycodone for the pain and like you, I try to use as little as possible. They are mad at me for that too. It is a catch 22, the more narcotic you take, the more constipated you get.  Constipation is not something a CD patient wants to hear.  So, I am grinning and bearing it.  In all, as bad as it is, it is psychologically and physically more manageable than a Crohn's flare.  I was flaring every two weeks while on prednisone,so there was no choice as far as surgery goes.  I agree, the Drs made big claims to me too about what surgery would do.  I was told to expect a great quality of life and that I will wish I had done it sooner.  I am a realist, so I haven't gotten my hopes up.  I am sorry to hear you are vomiting.  It is depressing, I know it all too well.  As far as hearing good news, I feel ya.  Its been a long time since I have heard good news. I experienced a 5 year remission as a teenager and have been waiting for it again. Now at 29, I am just so tired of working to accomodate this monster.  I have a lot of support, and I am not going to let CD win. I refuse too. Hang in there, others say it is at least 6-8 weeks before you feel better after surgery. I trust the people here more than the docs on that one. Take care.

 

ajz

 


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 4/16/2008 5:54 PM (GMT -7)   
PLEASE keep posting updates. I have been contemplating surgery for a long while now but am very frightened about it. This input is very good for me.

Thanks!!


-Leslie

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/17/2008 9:24 AM (GMT -7)   
Hi Amanda and ajz I didn't have much pain after they tooh the epidermal out and not much with that .I took one tylenol . I was a little sore and getting the BM's going was a little sore but it wasn't long before they became solid. Give things some time and hopefully you both will feel better.I know the pain before surgery too was bad for me but now I am almost 3 months in I am painting and after not using much body movement for months am minding it but I am over 50 so expect things need more excercise now .Just take it easy your body needs rest and listen to what it tells you .lol gail
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