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Surgery time

I was diagnosed with crohns about a year and a half ago. I have been on 6g of pentasa since i was diagnosed. I seem to have one flare up after another. So with this last real bad one the Dr. decided it was time for surgery. On oct. 6 they will be removing my terminal illeum and a small portion of my large intestines. I am really scared don't know what to expect as far as pain and recovery and quality of life after surgery. What will i eat? how much help am I going to need at home? The big question is do i really need surgery couldn't i go on a stronger medication? Right now I am on
Pentasa 6g
Flagyl 750 mg
dicyclomine 20 mg
prednisone 40 mg
prevacid 30 mg
calcium citrate 600mg
flaxseed oil 2000 mg
omega 3 fish oil 2000 mg
vicadin -as needed
multi vitamin-1x day

I still have a lot of pain and walk around like i am zutted out and in a fog.
I have never had diareah or ulcers or the sores. just bad swelling in the illeum so bad that when i had my colonoscopy that they couldn't get the scope through.I guess i am just real scared and wonder if i am doing the right thing. The thought of them removing part of my body diseased or not is freaking me out.


Punctuation Impaired
I had 6 inches if my terminal ileum removed last August. I had a patient controlled pain medication via IV while in the hospital. I had little pain. The NG tube was the most annoying part of the experience. You will need some help at home as far as household chores and meals go. You shouldn't be doing heavy lifting or bending for at least 4-6 wks post-op. I was sent home on clear liquids and told to advance them slowly as tolerated. By the time you are discharged you should be tolerating clear liquids and passing gas/ having bowel movements before they discharge you. The pain wasn't horrible post-op, it was a relief compared to the crohn's pain. Just take it one day at a time...I hope everything goes well for you.
whats an NG tube?

They told me i would have the button thing for the pain in the hospital. What is a ng tube? I am concerned about exercise too. I have trouble keeping my weight down so I do yoga every day and jog. Also I dance. Will i still be able to do all these things?


Punctuation Impaired
The NG tube is a Nasal-gastic tube. They insert it in your nose and down through the esophagus into the stomach. It is plugged into the wall suction at the bedside. It sucks out all the gastric juices and air. It helps decompress your bowels so they rest and things can heal. Hopefully they will do it while your asleep. It's nothing to freak out about. Its just uncomfortable. Mine was inserted while I was awake. They remove it at about day 2 or 3 post-op. (by that time its a relief for it to come out). When you see the surgeon post-operatively he will tell you when you can resume normal activity. About 6 weeks.
I had a resection in March 2009. They removed 8-10 inches of my large intestine, a small section of my colon, and took care of an abcess. I was in the hospital for a week, then home for a week. I did go back to work at about day 18 after surgery. I had a job I could sit at and take it easy, so the Dr. approved it. I had to take it easy and relax a lot, but I was still able to function at home. You have to be more careful with what you do, and I'm pretty sure you won't feel like doing any jogging for a while. Quite a while actually. Surgery in itself takes a lot out of you, not even to mention the medication and such on top of it. I didn't feel normal for many weeks, but I tried to get back into the swing of things as fast as I could.

You will have weight limits. I couldn't lift more than 15 pounds. I wasn't supposed to do a bunch of stuff at one time. But your body will tell you when you've over done it, believe me! hehe

I didn't have an NG tube, so I don't know much about that, or why some people get it and some don't. I was put on a stricter diet at the hospital, but they told me once I got home I could eat whatever I wanted. If it hurt, don't eat it again for a while.

It seems to just depend on each individual person and their case I guess. I would talk to your doctor and find out what he/she has to say. They have no problem telling you before hand what is going to happen. I wouldn't think you'd be up to much in the orm of physical activity for a while, but ask your doctor what she/he thinks about that as well. Be honest and open with your doctor and/or surgeon. They do this type of thing all the time, and can hopefully help you with your fears.

Good luck with everything, keep us posted. And of course if you have more questions or want to talk, feel free to PM me. I'm sure others feel the same way as well.

Oh .. and :welcome: to the forum. :)
hi Dusty, & welcome to the forum.

it does sound to me as if surgery is the best way to go, particularly if your consultant is advising it. if they couldn't get the scope through, then by logic it'll be problematic for your bowels to work as they should.. plus the swelling and pain issues - i'd say look upon the surgery as a fresh start, and a relief in sight from all these symptoms.

i've had 6 abdo ops in all, and yes i've been scared every time - i don't think that ever goes no matter how many you have. but the surgeons know what they're doing, and i'm sure you'll be fine, and glad you had it done!

aftercare - you need someone with you once you get home at least for the few week or so.. by the time you leave hospital they'll make sure you're eating, pooing and weeing ok, and also they'll get you up and about, and as mobile as you can be with a new incision. it will be sore - but shouldn't be too painful by the time you leave hospital, and they will adjust the pain relief down accordingly.. first day or so it'll probably be morphine or pethidine (mine was also via a pcas like Imisspopcorn.. it's really effective).

the hospital staff will tell you exactly what you should be doing and when.. the first 3 weeks you mustn't lift anything heavy at all.. regarding exercise, gentle walks are probably the most you should do once you feel like it.. then take it week by week, and ask advice at your outpatient appointments. i was driving again after 6 weeks, working full-time after 3 months, swimming about 6 months later.
I guess it is good to know i won't be completely flat on my back for the whole six weeks. they had me really scared. I am so not a sit still sort of person. They also told me i probably wouldn't poo for like 3 weeks after the surgery.
dustydshook said:
I guess it is good to know i won't be completely flat on my back for the whole six weeks. they had me really scared. I am so not a sit still sort of person. They also told me i probably wouldn't poo for like 3 weeks after the surgery.
I am not a sit still sort of person either, but you'll be fine. Just take it a little bit at a time and do what you can. You'll poo, it just might not be a huge amount or solid. There are some things that they will make you do in order to be discharged. Well they had me watched for certain things, like going poo. They need to see that your body recovered enough to be working again.

Unlike Shantel, I was told I could drive pretty much as soon as the staples were out. I still had people drive me around just in case, but went back to work (like I said) and drove myself there and back. :) heh
Shantel said:
Man - you had open gut surgery right - not just a lappy? I always thought that was dangerous - like if you were in an accident you could blow your wound!!!
Yeah, and it was all a big shock and unknown. :) haha It was quite the major surgery. I just make people stop talking and stare at me when I say "I was gutted" in response to their questions of 'what happened?' hehe

I'm sure you could open your wound in an accident if hit or shift your body the right way, but that could happen whether I'm a passenger or a driver. So maybe they finally realize that part of it. I didn't take any pain meds out of the hospital, so no need to worry about that aspect. :)
Not gonna sugar coat it...

Not to scare you but the reality of my bowel surgery was a bit of a nightmare..I had 18 inches of the small intestine removed and was in the hospital for 12 days...I had the full belly slice...I could not walk or bend or go to the bathroom without help - lots of morphine with the pump they give you - I don't remember the first two days at all ...the third day I had this feeling like I had to go and I rang for the nurse and she helped me to the bathroom and I went and went and went and went and thought I was dying so much diarrhea came out of me - scared me to death. I very slowly started to feel a bit better but it was a long, painful 12 days - it was weeks before I could lift a laundry basket let alone anything over 10lbs. I DO NOT say all of this to scare you but I wished someone had told me the truth - now, you may have a high pain tolerance and perhaps mine is not that high - but I always thought it was about average - the pain I have endured like most on this sight huh? Anyway, it is sort of like when women say "all the pain of childbirth just goes away once you look at that baby!" lol That's a lie! It hurts like bloody hell! and so does bowel surgery! No lie! You will not be running or jogging or anything but holding your gut for weeks and then one day you will be able to do more and more and then one day you almost feel normal lol That's my story and I'm stickin' to it! Seriously, good luck and tell us everything - most of us have been through it and if we can help in ANY way just holler...


Passionate Dreamer
It seems some people here didn't have much problems with surgeries.

I had a surgery 15 years ago and I still remember it as a the worst experience in my life. I've experienced a situacion similar to Carolyn's experience. (see previuos comment)

I think surgery is just something that needs to be done, but do not take it as the first option. I am cosidering having a second surgery these days, since doctors have been telling me to do so for years, but his time I will talk seriously to the surgeons about pain management before.

I am no trying to scarry anyone but I think sometimes is not easy.
i went through the same thing as you. i ended up have the surgery in june. they removed 15cm of my terminal illium. since then, i've felt better than i had in years. i was really scared but figured my doctor knows whats best and this is whats right for me. im glad i went that route. the recovery sucked b/c you couldn't move like you did before but its been over 3 months and im back at work and lifting stuff again. i have yet to get back to working out but i dont see it being a problem
I got awesome news today!!!!!

Had cat scan wednesday and it was my first normal cat scan in two years!!!!!
Apparently the prednisone is working and working well. My doctor canceled my surgery today. Yippee! I am going to finish out my prednisone taper I have about three weeks left. Going to do another cat scan about two weeks after taper if the swelling comes back he is going to switch me from pentasa to Humira. He also thinks that I have IBD was having some severe cramps and he put me on a med called Chlord/clid. which is like an anti cramping drug and a nerve pill all in one. Boy did it work like magic! man I feel like a new woman. He actually said to me you can't let yourself get stressed out. Like I can actually choose not to (my husband and i best friend of twenty years had a heart attack and had triple bypass at age 42) some stresses you just can avoid. But anyway glad I am avoiding surgery for now!!!
Hi Dusty, im about to have the opperation you were booked in for tommorow - 25 September, so if worst comes to worst i can tell you how it all goes
cheers John
Oh my gosh, I'm so glad you didn't have the surgery! No doctor should have recommended surgery for just swelling. That can always be controlled by meds (it's just finding the right one). It's when the intestines become necrotic that surgery comes into play, because nothing will help that...I had Crohn's for 8 years before surgery was forced on me due to necrotic tissue. I hope I never have to go through it again, either. The worst thing was the nightmares, horrible nightmares...the second week at home having nightmares about my stomach being ripped open in all different ways. I also slipped into the worst depression of my life after a week following surgery. I thought having surgery would be like a vacation...wrong.
Wow, i am sorry to hear that. I was kinda freaking out about them taking away parts god put in me for a purpose too. I haven't gained any on the pred. as of yet but i exercise a lot.

Let us know how your surgery goes A1Aussie. I'd like to know about your experiences. Best Wishes!

Shantel- I was kinda nervous and freaking out because I knew i wasn't getting my flares under control but i didn't feel as if the Doc was exploring all options before sending me to the surgeon and it felt like the surgeon was all too happy to do it and kinda jumping the gun there. My G.I. was dead set against me taking pred. so he had me on entocort which obviously wasn't working so he finally let me take the pred and i am so glad for it just starting week four and so for no side effects except good ones such as no swelling any more! I wish he would have tried it long before now. but any way The surgery just felt wrong to me i guess that is why i was freaking out and asking so many questions and very very relieved it is all streightened out now. Still feeling good so far. Hope the future is just as bright.