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MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 5/8/2010 5:03 PM (GMT -7)   
First I just want to say I love you guys and I'm so glad this forum is here. Second, I'm on my phone so I apologize in advance for possible typos ;)

So I decided a few months ago that I wanted to volunteer for surgery. My stricture is never going to get any better and if it'll put me in remission let's go ahead and cut it out. I was referred to a new gi with a little more experience with crohns and he agreed that I'm a great candidate for surgery. There's only about 3 inches of affected intestine and I'm otherwise relatively healthy. He put in a referral for a surgery consult but I don't know how soon I'll be able to be seen.

They are concerned that I am steroid dependent right now. Ive been on pred since nov and have only recently been able to get down to 15 mg (from 30) without wanting to die and I'm still not 100%. they are going to put me on 6mp in the hopes that combined with the cimzia I'll be able to get me off of steroids until I have the surgery.

Has anyone been on 6mp and cimzia at the same time? Also taking pentasa and a slew of supplements on top of the steroids.

Anyway my main concern is scheduling the surgery because I start grad school in 2 weeks and it's an intensive year long program. I don't really want to wait a year since the drs ate finally on board and I don't want to ruin my summer/ job hunt after graduation. I was thinking about doing it over winter break but I would be devistated to miss out on holiday goodies and don't think I could handle the torture of not eating while everyone else induges. My other option is the short break between summer school and fall semester. If I had the surgery the day after classes end I would have 13 days until school starts again.

Is that enough time for recovery if I still take it easy? How long is the prep and what does it entail? It is basically a scope prep?

Also I can't look at fruits and veggies without becoming violently I'll at the moment... Do you guys think I'd be able to eat them again after the surgery? I want to go vegetarian again so badly!!

Any other words of wisdom/advice/experiences with surgery would be most welcome. Thanks guys!!! Love love - Cris

(oh yeah. Surgery would be for the 3 inches at my terminal ilium so I'm hoping they'd be able to do it laproscopically)
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 5/8/2010 8:50 PM (GMT -7)   
I had my 1st Crohns related surgery on Feb 3. They thought I would just have a few inches of my terminal ileum removed and I would be on my way. Got in there, there was a LOT more damage that thought. Just to warn you that sometimes things aren't what they seem and you could be waking up in recovery with more recovery than you thought you'd have - which is what happened to me. Mine ended up being an open surgery since the laproscopic procedure originally planned had to be aborted mid-surgery.

I wish someone had told me how possible that was so I could have prepared myself - that's the only reason why I mention it to you.

My hospital stay was 8 days. I could have gone home at 6 or 7 but glad I stayed until 8. I was home from work another week, then I worked 2 days the week prior, and then back to mostly FT for a week after that. In all honesty, I completely missed the month of February. I wasn't really "back" until March. The recovery was harder than I thought it would be and you can not rush it - you'll just stick yourself back in the hospital.

When I was eating solid food - at about day 7 post op - I could eat anything. I took it easy but after a few days, I got adventerous and tried some previously challenging things like salads, nuts, popcorn and it all was fine! My surgeon told me I could "drive a truck through my colon" now so I am enjoying all those foods I missed.

The prep was similar to a scope, no big deal.

I couldn't wait any longer for surgery. I had no quality of life thanks to the pain levels I was dealing with and the vicodin I was downing on a daily (hourly) rate. It was hard to rearrange my work obligations and I had to cancel some travel plans for conferences but my health had to be first. My profs in grad school were amazingly flexible for me; I know it's a year long intensive program but I would still explore the possibility of doing some work long distance for a few weeks. Or, do it during a break and then arrange to have an additional week out of classes to recover.

My GI took me off Cimzia when we decided surgery was the only option. I am now on 6mp only but may be back on Cimzia before long. My Crohns was active again about 35 days post-op. I didn't get much remission, sadly. That's pretty rare, though. Your GI may opt to just put you on a maintenance drug - like 6pm - following surgery and knock you off the rest. While in the hospital, I was on IV steroids and went home with enough to taper off it.

MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 5/8/2010 10:44 PM (GMT -7)   
Thank you so much for all of that information!!! That was super helpful. I'm definitely going to talk to the surgeon and see what he/she thinks but I like to be prepared and have a plan set :) I'm so sorry to hear that your Crohn's was active again after such a short time :( **hug**
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/9/2010 8:25 AM (GMT -7)   
I would not try to "fit"the surgery into your schedule. As mentioned above they could find other things in there and have to convert to a open resection. That happended to me too. Also, even if done via laproscope, you still need to remember this is major surgery and you really need to rest up and recover. I hope you get this all figured out soon.
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"*

MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 5/9/2010 10:02 AM (GMT -7)   
Thanks Nanners. I know it isn't ideal to try to fit it into my schedule but I'm so impatient :( I really just want this thing out of me!! I'm tired of fantasizing about doing it myself lol. It would be difficult to really rest if I'm starting school two weeks after surgery BUT I *think* I could handle it =\ I've always been terribly impulsive and once I decide to do something I have to do it as soon as possible. I know surgery isn't something to jump into but it is something I have thought about for a long time. Now that I know its a possibility, I'd do it tomorrow if they'd let me. I just keep thinking about how nice it would be to not have to worry about getting sick and being able to eat whatever I want again. I guess for now I will just keep my options open and see what the surgeon thinks. Thanks guys!
<3 Cris
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/9/2010 10:41 AM (GMT -7)   
I had to wait a few months for surgery, and wish that I hadn't, all I did was get weaker as I waited. My recovery was complicated by sepsis, but I was truly messed up inside. So it took me months to recover from my first resection.

I will say this much, the best to can do is let the Grad co-ordinator know what your facing, much of it unknown, and find out how you and they can be flexible with your program so you can do both.

There is no either or here, but there is a need for you to learn patience. Your smart enough for grad school, be smart about this too, for the sake of your health.

One note, I would not recommend going back to nuts, seeds, peels and skins ( you can peel and seed a good summer tomato, just don't refridgerate it. You can peel the seeds of ripe strawberries, I do it all the time.

I would also suggest you avoid raw veg and watermelon and apples raw, but other fruits and veg should be ok, cooked veg more better -- oo exceptions carrots and corn (they are near impossible to break down).

The thing is, you won't see the damage right away, so care is necessary.

This is not to say you don't treat yourself to things once you are really recovered. I went from my first surgery to a pouch, and that allowed me to eat much without worry cuz if it didn't break down, it got out of me really fast. Not the same though for a resection. Some days I miss that pouch... sigh....

Impulsiveness and CD can be a tricky combination, so please take care. And see what your Grad coordinator can help you with.

Facing surgery it is always a good idea to rally your forces, friends, family, teachers, employers.

I think you can get all that you are working for, but you might not be able to control the timing, and that's ok if you respect this.
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 5/9/2010 3:19 PM (GMT -7)   
I am currently on prednisone 20mg every other day, Imuran 150(soon to be 200) a day, and Humira Pens One per week.

I had surgery in November 2009 to remove a stricture, they took out 3 inches of colon.

I was also sort of in a flare up in November, and on 20mg per day of pred in November. Along with Humira Pens One every 2 weeks, and I completely stopped Imuran. My surgeon did not want me to go to 20mg every other day of prednisone, he wanted me to stay on 20mg a day, so I did. I was also on 20mg a day for most of December.

I did not have complications, there were no issues with me taking that much prednisone and having surgery.

The only downside is; I am still sore from the surgery today, I still have numbness too. It truly does get a little bit better every day, but still, it's frustrating that I am not yet fully healed up. I am pretty sure it's taken me so long, because of the prednisone.

I started doing things again in February, so about 3 months, and I was driving myself around, and I was also back in the gym exercising. I am very glad that I went through with the surgery, no regrets.

I hope things go well for you too.

Take Care

MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 5/11/2010 12:01 PM (GMT -7)   
Thanks for the food advice. I would definitely want to work my way up to certain foods. I would probably start with cooked veggies to be safe but even that would be wonderful!!! I miss broccoli more than anyone can know lol. That's also a good idea about talking to the grad school coordinator. I will definitely talk to her at our orientation next week to see what she thinks. I wouldn't worry so much if it was just school but I will be starting an internship in the fall as well. The good news is that it will be in an agency so I won't be running all over town like I was doing this year. Hopefully I would be able to take it easy and sit for most of the day.

It is definitely tough to be impulsive and have CD...especially when it comes to food. I cave to cravings far too often and pay for it later. I am trying to really weigh my options for the surgery though. I definitely don't want to make anything worse than it already is and I certainly don't want to mess up grad school. The thing is that I will have to squeeze it in somewhere no matter what because I never slow down...always on the go. It will definitely make things tougher for the first semester but if I can just suck it up I think I'll be fine and I'd much rather do that than do it while looking for a job. I will keep the possibility of winter break open since I will have more recovery time but I would like to do it as soon as possible especially since I tend to flare up at the beginning of every school year. Maybe I can get it cut out before I start the inevitable flare lol.

Homeboy - Sorry to hear that you are still sore from your surgery. Did you have open surgery? I'm not really worried about being well enough to work out or anything...because I hate working out lol. I am a little worried about fatigue though. I don't have time to be tired with my schedule :( You weren't able to drive for 3 months? Is that because your surgery was for your colon? I imagine the surgery/recovery is a bit different than for the terminal ilium.

Oh I was also wondering if anyone has had their appendix taken out during a resection? I used to joke about how I was going to die from a burst appendix because I would think it was just a Crohn's flare up but my boyfriend suggested last night that I just have them remove it when they do the surgery since it's in the same area. I don't know that I would want to do that but it doesn't seem like a terrible idea. I mean...it's useless anyway and would be like preventative medicine. I don't know that they would want to have any more areas that could potentially get infected during recovery though. Anyway, was just wondering.

Hope everyone is having a wonderful day!!! <3<3 Cris
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


appy.lovee
Regular Member


Date Joined May 2010
Total Posts : 88
   Posted 5/11/2010 3:11 PM (GMT -7)   
the surgery that I had i was in the hospital the week before They scheduled it, they let me go home for a day and the prep was like any other surgery, no food after midnight, and try to limit the amount of liquids I drank. I was in the hospital for 1 week after my surgery they sent me home and the next day I ended up back in the hospital for another week. It also took me probably another 4 or 5 days(after being released the second time) until I could eat normally. I was on alot of dilaudid and percoset when i got home so I could not drive or preform normal tasks because of this. everyone deals and recovers from surgery differently, so you won't know exactly how you will feel or how long you will be hospitalized for sure, until you go through with it. I also had 2 feet taken out of my small, but my surgon said no matter how little or how much he wouldn't do it laproscopically because he wanted to look through the rest of my intestine and the such, so I guess that would be up to the opinion of your surg on if he cut you open or did it lapro. I also could not return to work for a month after i was released the second time, but that was just because of the pain meds. I also have been told I tend to heal really slowly copared to most.
 
oh and also during one of my mothers surgeries they removed her apendix because she didnt need it and she asked.


imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death.

Post Edited (MissAnonymous) : 5/11/2010 4:18:33 PM (GMT-6)


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/11/2010 6:51 PM (GMT -7)   
Mine was taken out as that's about where the worst of the CD was. No biggie.
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.

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