surgery update (yucky details)

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Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 8/16/2010 12:23 PM (GMT -7)   
I'm finally at the point where I am starting to process what happened to me...I need to talk about it because I haven't quite dealt with it yet.

I had my surgery on the 26th. I went in with the expectation of laproscopic surgery to remove 3 inches of small intestine and a few inches of my colon. Once inside they found...a hot mess. Apparently the steroids had been masking what was really going on. I had developed an abscess that fused my small intestine to my ureter and back muscles (no wonder my back had been killing me). They had to cut my ureter to repair it and inserted a stint (to be removed in a few weeks). They removed the abscess and had to pull some small intestine out of itself. They cut out a foot and a half of bowel. I woke up with a 6 inch vertical incision in the middle of my stomach, a catheter (that stayed for 2 weeks), a JP drain coming out of my abdomen, and several small tubes sticking out of me (some sort of anesthesia going to the incision site). The first 24 hours were the worst pain I've ever known and I wouldn't wish it on my worst enemy. I stayed in the hospital for a week and was discharged with home health care and my family to take care of me.

I felt great for a week and after a few days at home I was starting to walk around and even went out to dinner one night. I was enjoying my new food freedoms (eating lots of fruits and veggies) and then my JP drain clogged and turned gray/black. I went to the doctor on Friday to have her look at it...and was admitted. A CT showed that I had 2 new abscesses. One was pretty small, the other about 2-3 inches. I was on IV antibiotics for about a week and was feeling ok but not great. They took me over to another hospital to have a PICC line inserted so I could have IV antibiotics at home. (Oh yeah I forgot to mention that I had 5 IVs in the week I was there as well as a Heparin shot every 8 hours) The following Friday they did another CT and found that one of the abscesses was actually growing and was now about 4 inches. They came to my room and told me they were going to try to insert a drain using ultrasound first and then CT if that failed. If neither of those worked, I would have to have surgery again. I asked when they were going to do all of this and was told they would come for me in about 10 minutes...

They weren't able to find a window using ultrasound. They found a 5mm window with the CT and inserted a 3mm drain into my abdomen...while I was awake. They discharged me the next day and here I am. So I currently have 1 PICC line and 2 drains while I sit here typing. Hopefully the PICC line and one of the drains will be gone this week but they are pretty sure the JP will stay. I busted my butt to finish summer school a week early so I would have more time to recover and have needed every minute of it. School starts again next week and I don't know that I'm ready. Not to mention the fact that I'm completely fried. I graduated in May and a few days later started an intensive advanced standing graduate program... and have spent the last 3 weeks going through hell.

I did well with my incision scar until yesterday and now I can't think about it without crying. All I can think is that they ruined my stomach. I was planning on going on a cruise with my boyfriend in the spring to celebrate my graduation from grad school and now I'll never be able to wear a bikini again. I'm horrified at the thought of him even looking at my stomach. I know that should be the least of my concerns but in a few weeks, all that will be left of this is my ruined stomach.

Thanks for letting me vent a little. I think it's all finally hitting me. I haven't been able to be alone in 3 weeks and I have been trying to be strong for all of my family. I haven't had a chance to really just feel upset about it and cry.
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

Veteran Member

Date Joined Apr 2006
Total Posts : 634
   Posted 8/16/2010 1:03 PM (GMT -7)   
aww, babe. You've been through alot. have a gentle (((((hug)))). You will pull through this, i know you will. Why, cos your strong. If you werent strong, you would have fallen apart long ago. You will wear a bikini again, cos you will be proud of your strength. The worst is over, little concellation (sp?) right now i know. Know that you are not alone, if you need to talk, your more than welcome to email me x
Dx - Crohn's (2006), Depression (2010)
Currently - Humira fornightly, iron infusion weekly, B12 3 monthly, prenatal vits+minerals, 15mg prednisolone, calcium supplement, mirtazapine
Tried - aza, pentasa, questran, infliximab
No crohns' surgeries to date, Episcleritis for 3 weeks x 2, pains in hands, wrists, hips, lower back, knees and ankles

Allergic to Infliximab
Was at uni, but have paused the course to try to figure out my health!

Veteran Member

Date Joined Feb 2009
Total Posts : 1882
   Posted 8/16/2010 3:52 PM (GMT -7)   
Wow, what an ordeal but you have come through it with flying colors. I think if you didn't cry some, you wouldn't be human. The scars will fade in time and they have good stuff to help these days. You'll wear a bikini again and please enjoy it. I bet you'll look fabulous!!! Take care of yourself. Best wishes for a speedy recovery!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

Regular Member

Date Joined Aug 2010
Total Posts : 129
   Posted 8/16/2010 4:41 PM (GMT -7)   
You are SO strong! I am very proud of you, and that you want to share this story with others. We all need to be aware of how fragile our lives can be. I heard the best quote: "If you can't change the wind, change the sails." You are strong to have gone through what you went through which means you will be strong to get through the rest.
Diagnosed with Crohn's disease March 2008. Battled a C. diff infection from Summer 2009-Spring 2010. Have been dealing with a severe flare for the past several weeks.

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 8/16/2010 5:15 PM (GMT -7)   
Oh my!

I have a close friend who went through similar things a couple years ago. I remember her detailing the PICC and drains being placed, and I felt for her because it sounded so horrible. So sorry you had to go through so much!

You just have to look forward now though. The worst is over (hopefully...crossing my fingers) and now that the doctors know what is actually going on, they should be able to get you healthy. I know how much it stinks when you're going through all of that, and how overwhelming it can be, but you have to try your best to deal with what you have to, and leave the rest behind. I say this knowing I don't follow my own advice and I get freaked out and stressed also.

As for the scar...
Your belly won't ever look the same, but had you not had surgery, it sounds like things were progressing to life threatening. It's better to have a larger incision and the surgeon being able to do surgery correctly than have little incisions from lapro, and things have just been "bandaged" instead of fixed.
I think all of us who have had surgery go through the initial period where we freak out about having such a huge scar (especially if you're young) but in time you'll adjust and it won't be something you're ashamed or worried if other people see. I had my first surgery at 19 and was SO overwhelmed and horrified about the scar, but 13 years have past now and I really could care less. It really does get better with time.

Keep updating us and letting us know how things are progressing. (((((BIG gentle HUGS))))) to you!

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 8/16/2010 6:26 PM (GMT -7)   
hi Miss Cris... I just want to send a hug your way! You've been through *so* much! I can understand the fear of the scar. I feel like I have that streak in me too. But, I also know that, in time, you might well look at your scar as a sign of your strength. It will fade, as someone said above, and many people end up with various scars. My closest friend had a brain aneurysm in his mid-20s - had to have brain surgery. It saved his life - but he's got a scar wrapped around his head. And, since he's bald now, it's right there. You know what? I knew him for a couple of years before I even *noticed* it. And it was right there. It wasn't until he pointed out his own insecurity about it that i really looked. But, it's a sign of his life being saved.

Hang in there... You are strong, clearly! I believe you will pull through this. But, you should also go easy on yourself. We all feel scared ... and we'd all be frightened of a new scar from our recent surgery. Everything you're feeling is so natural to be feeling. Allow yourself to grieve your scar-free belly. Then look for the signs that you can associate with the new feature to tell its tale.

I sure hope you feel better soon! Good thing they caught all of that!
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

Post Edited (sr5599) : 8/17/2010 8:25:17 PM (GMT-6)

Veteran Member

Date Joined May 2003
Total Posts : 2481
   Posted 8/16/2010 7:13 PM (GMT -7)   
I know how you feel, I have an ugly crooked long scar that even goes around my belly button. I still wear a bikini, except I have a wrap around over the bottoms to cover my scar on my belly. I think the wraps look cute and sexy, so I suggest you try one with a bikini before you decide against it altogether. You can always find a bathing suit that has open sides but covers the tummy. Those are very nice too.

Take care, don't fret. :-)

Regular Member

Date Joined Apr 2010
Total Posts : 29
   Posted 8/16/2010 8:21 PM (GMT -7)   
Hey, im sorry for everything that you had to go through but it seems like your going about it the right way, hopefully the worst is behind you. Goodluck with everything, Take Care
21 year old male, Diagnosed with Crohn's in Feb 2010.
Previous Meds: Prednisone, Pentasa. Meds did not work apparently and inflammation became more extensive so I had to start on the current meds. 
Current Meds: Remicade (done 1 infusion) and Azathioprine 125 mg. Have been symptom free for 2 months even before the Remicade and Azathioprine.
Trying to eat natural foods, avoiding red meat, dairy, spicy, fried foods and refined sugar. Interested in trying to figure out if there is a way to get off medicines and achieve/maintain remission with diet.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/17/2010 7:26 AM (GMT -7)   
First off (((BIG HUGS))) to you! I understand very much how you feel, as my first resection which was an emergency had many complications too. I remember waking up after thinking it would be done via lap too, and I was afraid to breathe it hurt so bad. I got an infection in my incisions (both resections) and had to go thru 6-8 weeks of wet/dry packings. I had the picc line, and NG tube down my nose. I didn't have quite as many complications as you, but it was still pretty bad.

As for the scar, I am much older than you and really don't care anymore. But I think Roni has a great idea about the wrap. Sending healing prayers your way that this all leads to a long long remission for you. Don't forget to get back on a maintenance med so you don't have to do a repeat. That happened to me, and I don't want it to happen to you too. As for school, sweetheart, its gonna have to wait. You need to take this time to recover, so rest up and get better first.

Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Nov 2006
Total Posts : 88
   Posted 8/17/2010 7:41 AM (GMT -7)   
OMG how terrible for you ....I just got home yesterday from myvery first surgery!!! it was bliss next to yours poor thing. Its made me more appreciative of my recovery, won't moan at all today lol Hugs xxxx

Regular Member

Date Joined Jul 2008
Total Posts : 440
   Posted 8/17/2010 3:06 PM (GMT -7)   
In this country we over emphasize outward beauty! My sister that lives overseas always tells me to take my scares as a story about my life and who I am. A story that will make you a more deeper, more compassionate person towards everybody that u get to know!!!! You are much more than your outward appreance!!! Yes, you've been through a terrible ordeal. I am sorry for your experience. Trust me....I know this disease can really suck!
My body looks like a road map from my scars. It took me a long time to look at my self in a mirror. Many times it has brought tears...then I realize I don't want people to just know me from my outward appreance. I am not just a book, I'm a novel. And to be able to love I gotta love MYSELF first.
If somebody has an issue with your appearance they ain't worth it anyways:)
Put on your Bikini and wear it with Pride for what you've have been through!!!!!!!!!!
You deserve it!!!
Crohns, Diabetes type 2, Fibro, (Depression and Anxiety..who wouldn't?) Back surgery on herniated L-4 L-5 and S-1. Total of 13 surgerys!

Imran 200 mlg, Asacol, Colestid, Bentyl, Lamotil, Paxil, Amitriptlyne, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

Regular Member

Date Joined Apr 2007
Total Posts : 208
   Posted 8/17/2010 4:35 PM (GMT -7)   
I really feel for you. You've been through quite a lot in such a short time. You are in my prayers.

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 8/17/2010 7:23 PM (GMT -7)   
Heather-Just wanted to say your post was wonderful. I'm pretty emotional right now from PMS and it almost made me cry. I think all of us do need to remind ourselves that we are "novels" and that the world focuses SO much on the outside, and really it's the inside of us that matters. Thank you for your post. Even having had my first surgery 13 years ago, I do worry about the next guy I date and how he'll react. It is a part of me, but we all do have insecurities and need reassurance from time to time.

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

Veteran Member

Date Joined Jan 2003
Total Posts : 6131
   Posted 8/18/2010 3:47 AM (GMT -7)   
ive had verything you had more than once. sorry you had to go through it but ya get used to it.. as for your scar, hey it might win ya a beer at a bar someday! when you have a Csection someday ya gonna say no i dont want a scar? they only do what they have too. 6 inches is actually kinda small. mine is 11 1/2 from top to bottom and 1 inch + at its widest, and its still1/2 inch deep, i have 2 that are 4 inches and 8 that are 1/2 inch the jp drain scars are pencileraser size the feeding tube one is the size of a dime the IV scars in my biceps are 1/4 inch 5 on the left arm 10 on the right the neck insertion scars are 1/2 each , 3 of those, 2, 1/4 inch bleeding time scars on each arm they used to cut you with little razor blades and blot the blood till it clotted, iv scars on both feet. so look on the bright side, it could be worse right? ive won every scar competition ive ever had, ive won drinks (cokes) cause i dont drink, money ( 10 bucks says your scar aint that big) etc.. your boyfriend wont care if hes a good guy, and neither should you if you love yourself. its a battle scar its a reminder of your perseverance, its apart of you if he says one negative thing about it id dump his *** so fast, he wouldnt be worth you time to tell him to get lost. good luck and have fun on the cruise! oh and make sure you get some pain pills before the pull those drains out theres usually a flat recatngular 2 inch long thing on the end and its gotta come out that round hole.

Veteran Member

Date Joined Jan 2010
Total Posts : 794
   Posted 8/18/2010 2:36 PM (GMT -7)   
Sounds like you have had a tough time of it, hope things improve soon.
re the scar, when all is healed, Bio Oil is extremely good for fading/improving the appearance of scars and if it still bothers you there are specific make-ups to camouflage them completely(waterproof too) There are a few on the market and I believe that the Red Cross also provide a service for covering up disfiguring marks.
I do think that each and every scar tells a story about our path through life though but I also understand that sometimes you don't want to be reminded

Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 8/18/2010 4:23 PM (GMT -7)   
Sorry it took me so long to get back to you guys, I haven't been able to make myself get off the couch to get back to the computer this week. Thank you so much for all of your replies. Some made me tear up a little :P

I had my follow up CT this morning and the abscess is gone! They took out the drain they placed on Friday and then I went down to meet with one of my surgeons. He took out my JP and my PICC line so I am officially tube free!!! I feel a million times better! The only foreign body in my body at the moment is my stint and that will be removed in a few weeks. I feel like I can finally start recovering now.

I'm dealing a little better with the scar. I think I just needed a few days to grieve the "loss of my stomach". I started using Mederma this evening and I'm hoping that will help a lot. I told my nurse last week that I was going to tell people I got into a ninja fight :P I think it might be fun to come up with random reasons for my scars. As a few of you pointed boyfriend shouldn't care (and realistically I know he won't) and I shouldn't be with someone who does...that is very true and makes me feel a lot better about letting him see it. I think eventually I will really be ok with my scars, maybe even proud of them. Right now I'm so thrilled that the Crohn's is gone (even if just for a little while) and I have all of these tubes and stuff out of me finally!! Life is good at the moment and only getting better.

Randy- I wish I'd read your post before this morning lol. I got my drains out today and man...that did not feel good. Thankfully the surgeon was relatively quick with the JP but that would have been good information to have :P
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

Veteran Member

Date Joined Jan 2003
Total Posts : 6131
   Posted 8/18/2010 7:49 PM (GMT -7)   
glad it all worked out! stay strong

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 8/18/2010 9:41 PM (GMT -7)   
Glad it all worked out and hope your feeling better. I dont know how big your scar is but if its like Randy's there is a bright side. You never have to clean the lint from your navel again. Could be a perk ...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 8/18/2010 10:24 PM (GMT -7)   
Don't forget that the scars are more noticeable now than they will be in the future. They will start to fade and become less obvious over the next few years. Some of mine are almost invisible now.

Occasionally, when my husband gets bored, he uses washable markers to connect the scars and turn them into pictures like the ones you see of the constellations in the sky. He says my belly is a work of art and each scar was put there to help me. (Personally, I liked the blank canvas better!)
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