Resection time

I suppose the time had to come sooner or later. After being diagnosed with Crohn's disease when I was 10, 13 years later I'm in need of a resection of my terminal ileum.

I would love to have any information from anyone that knows anything about this. My doctor gave me a very small amount of information and I'm feeling lost as to what's going to happen. I have to go in for a small bowel or some CT scan to see how much of a stricture I have and then surgery in the next few weeks.

I'm also starting on Humira. My Mom was so excited about this and pretty much told the doctor thats what she wanted. haha If you have any thoughts about Humira let me know that as well! They are going to begin to lessen my 6MP.

So, any comments would be greatly appreciated! I wish you all well!

I just had the last 18 inches of my terminal illeum removed last August. I was diagnosed at 20 and had it out at 25. I had been on steroids for a year and was still in a ton of pain. I guess you may be looking for specifics of what it might be like? I know I was nervous, but this was the single BEST thing that happened to my Crohn's since I was diagnosed. It was definitely the right decision for me.

I fasted for two days before the surgery to be cleaned out. The morning of the surgery they took me back and set me up in this gown that hooked to warm air so that it would keep my body temp up during surgery. Operation rooms can get cold I guess. I was having an epidural (definitely worth it IMO) and so an anesthesiologist came and talked to me. I was nervous, but they give you a shot of something to "relax" and boy does it work. YOu lean forward and they put the needle in. Didn't feel a thing. I don't really remember falling asleep. That's typical I hear.

The surgery took a few hours, and I was in a room by the afternoon. I was able to talk to my family and even answer the phone, but in retrospect was probably too high to be talking to people lol. I slept a lot the first few days, and it all kinda blurred together. about 24 hours after the surgery they had me get out of bed and stagger to a nearby lazyboy chair. I guess they want you moving about some and it wasn't as bad as I thought moving that early. They gave me a pillow to hold against my stomach since the pressure seemed to help with the soreness. I slept on my side most of the time with the pillow pressed to my stomach, and that worked pretty well for me. The epidural had me feeling itchy on my legs which I was told was normal side effects, but that went away quickly. The epidural was definitely worth it. Being able to administer my own meds meant I could do it on my own time and not have to wait for a nurse to be free to give me meds. By the time I was off meds I was okay going a bit longer but one time the nurse was late and I was a bit uncomfortable by the time she got there. Also, while 'high' on pain meds, I couldn't read a thing--I couldn't remember what I was reading. So bring some movies or watch tv or listen to music. More intellectual pursuits may have to wait til later.

On maybe the fourth day they had me eating. It was crazy! The "easy " hospital foods were ones I hadn't been able to eat in months! Lettuce! Unfortunately my intestines hadn't woken up from the anesthesia yet and things backed up and I got kinda nauseous and in pain. It was difficult to distinguish it from my incision pains, but once I felt it, I FELT it. THey ended up using a nasogastric tube with suction to empty my stomach. I had that for a couple of days and another day of liquid diet and then back to food again. They kept me until I was able to go to the bathroom and they knew my intestines were working, which ended up being seven days. Even with the starting eating too soon, the surgery was hugely successful for me. I was eating foods I couldn't eat for months while I was still in the hospital. My pain, even with healing incisions, was less debilitating than what I had experienced before.

After going home, I really had to take it easy for a couple weeks. I stayed at my mom's and slept a lot. They had me eating a soft food diet. Cooked veggies, eggs, no seeds or hard to digest things. But gradually I built up to eating all sorts of crazy stuff :) No lettuce still. My body doesn't like it. They told me to expect my body to spend about six months being "unsettled" which basically means post op diarrhea and constipation and discomfort as your body deals with the trauma of anesthesia and incisions. My surgery left me with one big incision going from my belly button down about four inches, and three one inch incisions where they inserted the instruments. Sometimes they can make the big one smaller, it all depends on what they have to do to get it out cleanly. After surgery, I tapered off Prednisone and kept taking Imuran to hopefully stay in remission. And B12 since the part removed was the part that absorbs the B12 during digestion. Unfortunately my Crohn's is back, but way more manageable than before. I feel lucky and I'm glad I didn't wait. The pathologist said that if I hadn't had it done, it would have happened within six months anyhow. It took me about a month to go back to working but I was easily tired and took it easy for a while, so plan to build up slowly to a full work/school day and rest when your body needs it. The early stages of the SCD have food that will probably be easiest for you post-op, and I've found that the SCD has been tremendously useful for me in general. I know I wrote an essay here, but if you have any specific questions about what to expect, PM and I'd be happy to tell you more. Good luck!

i had my resection done back in 2005, i was on remicade for 2 yrs before that, when me and my doc discussed surgery, we realized that with the remicade lowering my immune system capabilities, it was best to terminate it before the surgery.  I agreed bc i did not want to risk infections or deal with a worse recovery period.  im not sure how humira works but if it lowers the immune system like remicade did, u might want to think twice, and start it after the surgery, or at least talk to your doctor about it.  good luck with the resection, you should be perfectly fine, yeah it sucks having your stomach cut into, but as long as you do everything the doctors tell you to do you will have a good recovery.  So you know they will make you sit up the next day, and it is not pleasant at all.  They will be looking for intestine sounds daily, and when u start passing gas thats a good sign as well.  The most annoying part of recovery is having to sit on the toilet for periods of time waiting to poop, cause you cant push and help it along, have some good reading material by the toilet!

I had my TI removed when I was 15.  One thing I did want to point out, which was explained to me.

Your liver stores enough B12 to last you for x number of years.  After that, you will have to find a way to get B12 into your body.

I do the B12 injections, and I actually look forward to doing them, they give me a rush of energy that lasts for several hours, with little negative affect.

Humira is great, I suggest you watch the videos a few times though.

Pens;

http://www.humira.com/RheumatoidArthritis/AdministeringHumira/Default.aspx

Syringes;

http://www.humira.com/JuvenileIdiopathicArthritis/AdministeringHumira/Default.aspx?p=syringe

You guys are incredible! Thank you so much for all your information, advice, stories, and considerations. Everything you say is so greatly appreciated especially when you have no clue what's going to happen with my future resection.

I called the surgeon and left a message but no call back yet. :-/ Kind of irritated by this. Anyway, I'm currently in an internship at a hospital for Radiologic Technology. I'm wondering how long recovery is so I can get back at it. I can't get behind or kicked out because of this. Just another worry.

I don't know if you are anyway interested in myself but I'll keep you informed on what's going to happen and when for the resection.

Three things I'm not looking forward to:
1)Scar
2)Not being able to eat
3)NG tube




JAB_ sounds like we are a lot alike - what's the CT enterography like? I heard my doctor mention that before I have my surgery



Take care everyone!

My surgeon doesn't use NG tubes anymore. Thank goodness!

My resection was Feb 3. I'm just now to the point where I think it may have been worth it. It was not pleasant. I won't lie - it was awful exp for me. And I'm pretty tough. But others had an easier time, and I hope that everyone does.

Mine was supposedly going to be laproscopic - according to the damage seen on tests. Well, those tests are not the end all of information and don't always tell the whole story. Got in there, I was perforated, had a dried section of intestine stuck to itself because it was draining into my abdomen, my appendix was stuck to it, there were 2 seperate fistulas, an absess, and a hole in my colon. NOTHING showed up on tests. He aborted the laproscopic part and opened me up - he couldn't get the "mass" out of a teensy hole. So I dealt with the hurting shoulders from the laprospobic procedure (when they fill you with gas to inflate the area, it shoves everything up so your shoulders often really hurt afterwards) plus the incision. It was like a bikini cut - similar to a c section. Then I had 3 lap cuts. I don't mean to scare you but I found after the fact how common it is to go in expecting a similar lap procedure and come out with a lot more recovery time. I wish someone had warned me it was a possbility. (ended up with a double resection, is what he referred to it as, since he had to cut and reconnect the colon due to holes and fistulas plus cut and reconnect part of the TI).

Anyways, the logistics of mine:

1pm Wed surgery time - surgery was a couple of hours

7pm Wed finally in a room - saw my DH in the recovery room and later in my room, along with friends/family.

Slept all day Thursday

Friday morning, nurse pulled me out of bed and we walked.

Saturday morning, catheter was removed so I had to get up more often to pee =(

Sunday night, allowed soup (before that, only ice)

Tuesday, allowed full diet - though I was scared to eat and didn't do much

Thursday, went home

Friday, eating normal meals - even fruits/veggies. AWESOME!

I never had any pain eating. The gas pain was unbelievable when my guts started to wake up a day or two after the surgery. I had a morphine pump plus a stronger pain med as requested (dilute?). It was used often in the first few days. By the time I went home, I rarely used pain meds but moved very very slowly and had a lot of back/shoulder/muscle pain. A massage a few weeks later helped a TON. Went back to work about 4 weeks after the procedure - so, I was out the whole month of Feb, really. My surgeon would have rather a little longer...

They used general on me.

Hope that helps some - make a list of questions for your surgeon when you have your consult visit! Each are really different.

ETA: Yeah, the bathroom bit is weird. I never get D with my disease. In the hospital, everytime I passed gas it made a mess. If you catch my drift... and of course, with all that gas moving, there was a lot. Lomodol was awesome - it stopped that. I had a mix of D and painful solid BMs for awhile. I'm back to normal BMs, though a lot more frequent. No D, which was a big fear of mine. Though I have a LOT of gas now.

And, my remission was 35ish days long. My disease is already active again.

 

Post Edited (Aimee =)) : 6/8/2010 9:47:13 PM (GMT-6)

Yep definately feedback that I was looking for. I just don't want to feel alone in this so the more I hear of people having these types of procedures the more i feel confident in proceding. I suspect from my test results that my procedure will be similar to Aimee's. I can't say that makes me feel too good considering your experience Aimee. Big hugs to you there. I'm sorry that the Crohns resurfaced a month later. Kind of a bit much to go thru for that type of result. But we gotta do what we gotta do sometimes huh?

Anyway, Pmkrier the CT enterography is when you go thru the "donut". The big machine that kind of encapsulates your body as you go into it or thru it. You go in feet first so only your abdomen is scanned. They then insert an iv where they inject the dye or contrast. I guess these tests have become much more utilized to look for Crohns. This is what they used to verify that my Crohns is active.

Well I'm off to the hospital to get a cd of my greatest hits and have a second opinion from another doctor. Wish me luck. I look forward to further posts....keep us posted PMkrier. I'm interested in how long the time frame is from consultation to actual surgery.

JAB

I'm afraid so. At least that time frame. Depending on age and how healthy you are could be more or less.
It's a fairly major surgery, and with any surgery we need time to heal, inside and out. Having anesthesia
takes it out of you as well.
I wish you luck.

Bump-Just wondering if there was any new news. I have an appointment tomorrow as a referral from another doctor. Going to see what he has to say about surgery or not. I really want to get on Remicade just to see if it helps. I'd rather exhaust all possibilities before having surgery. I have inflammation and fistulas. There has been evidence that Remicade can reduce or eliminate inflammation along with fistulas. I hope that is an option. In the meantime since the Humira isn't working for **** I'm having trouble maintaining weight and am starting to look like a POW. Depressed.

Sorry to dampen the mood here and by no means am I trying to steal the thread. Just wondering if there were any further news and got a bit sidetracked.

Debilitated- I wish that this site had Private Messaging. I was curious on why you are having a resection done. I mean what exactly is going on with your gut that this is the answer. I'm sorry for what you are going thru. It's starting to sound familiar tho.

Post Edited (JAB) : 6/14/2010 9:44:33 AM (GMT-6)

Hi Pmkrier-

Glad to hear that you have a tangible date to work with. I know that was something that weighed heavy on your mind.

Well I went to down town Chicago for a second opinion and the doctor there didn't seem to strong about having surgery at this point. He wants to up the dosage of Humira to once a week and see how that works. My last CT Enterography showed there was Crohns activity and that I had additional fistulas. The doctor downtown really didn't flinch to that news. I didn't know whether to be relieved or what. He ordered a bunch of blood work and sent me on my way. So no surgery for now. I'll keep ya posted and I hope you do the same.

On a side note I received a call from the doctor's office with results from the blood work. She asked that I call her. I called her back with in 5 minutes and I got her voicemail. I hate that.....makes me feel queesy (sp?) the rest of the day til I find out.

Say I wish you luck in completing your internship. That is a real important thing to have on your resume. Keep on plugging.

I hope the Humira provides some relief in the meantime.