Small Bowel Resection Surgery

[alisonp]

Hi everyone! I'm Alison, 20 years old, and new to the forum.

I've joined because I want to hear about the experiences of others who have gone through the surgery I am scheduled to have on October 16th, or if you have any general tips or suggestions. I have severe Crohn's disease and medications have generally stopped working for me due to all of the scar tissue that I have due to mistreated inflammation. Currently am on Remicade but it's not doing much for me.

The surgeon wants to remove about a foot of intestine. She said the part where my disease is located is where the small intestine connects to the large intestine, so she wants to do an Ileocecal Bowel Resection. She said she's pretty sure that she can perform it laparoscopically (minimally invasive) but that there is a 50/50 chance that she might have to do a full incision.

My GI wants me to continue on Remicade after surgery to keep my disease at bay and to prevent it from coming back.

Has anyone gone through this surgery or a similar one and can share your experiences or any tips? What medications did you take after surgery?

 

[Jennifer]

Hello alisonp and welcome to the forum!

Many members have shared their surgery stories in this thread: http://www.crohnsforum.com/showthread.php?t=30212

My story is in there as well (post #15). I've been in remission ever since and I continued with 6MP after surgery. If you have anymore questions after looking over people's posts in that thread feel free to ask. I hope your surgery goes well. Please keep us posted.

 

[worriedboy]

Hi Alison, good luck with your surgery. I pray for you that it goes well and gives you many long years of relief.
From your description, you are a textbook case of TI Crohn's and the surgery is of the common ones done in Crohns.

Feel well

 

[alisonp]

Thanks Jennifer for the link as I really enjoyed reading about other peoples experiences and it gave me some good insight on what I can expect. And Thanks worriedboy, that means a lot to me and I'll be sure to keep the both of you updated!

I still would like to hear from others who had the same type of surgery I had. Although that link was very helpful, a lot of the surgeries were different than the one I am having (ileocecal bowel resection).

If anyone reading this who had this type of surgery or know a loved one who had it, any information would be great. I love hearing about others experiences!

 

[Clash]

My son had an ileocecectomy, which is what you are talking about. His was done laparoscopically and took about 1.5 hours. He went inot for surgery on a Thursday and was discharged on a Sunday. He would've been discharged sooner but his bladder doesn't do well with pain meds and anaesthesia. We knew this going in.

As far as the surgery, he came out with a catheter that they placed while he was under. But it is usually removed a few hours after surgery.

He opted for the pain pump but after 2 days he discontinued pain meds except Tylenol because the pain meds were affecting his bladder (actually I think it was 2.5 days). He went home with a px of oral pain meds and I think he ended up taking to halves at bed time for sleep more than pain.

He had surgery on a Thursday and was back at work the following Thursday. Although for 6 weeks you aren't allowed to lift over 10lbs.

He thinks the main thing that help to recover quickly was walking shortly after surgery. The night after surgery he was up shuffling the room. The next day he took walk around the ward.

All in all he said the surgery and pain didn't compare to that of a bad CD flare.

 

[Jennifer]

I had the same surgery that you're about to have. Do you have any specific questions or concerns?

 

[alisonp]

My son had an ileocecectomy, which is what you are talking about. His was done laparoscopically and took about 1.5 hours. He went inot for surgery on a Thursday and was discharged on a Sunday. He would've been discharged sooner but his bladder doesn't do well with pain meds and anaesthesia. We knew this going in.

As far as the surgery, he came out with a catheter that they placed while he was under. But it is usually removed a few hours after surgery.

He opted for the pain pump but after 2 days he discontinued pain meds except Tylenol because the pain meds were affecting his bladder (actually I think it was 2.5 days). He went home with a px of oral pain meds and I think he ended up taking to halves at bed time for sleep more than pain.

He had surgery on a Thursday and was back at work the following Thursday. Although for 6 weeks you aren't allowed to lift over 10lbs.

He thinks the main thing that help to recover quickly was walking shortly after surgery. The night after surgery he was up shuffling the room. The next day he took walk around the ward.

All in all he said the surgery and pain didn't compare to that of a bad CD flare.

Thank you so much for reply and I am so thrilled to hear that your son had a successful surgery! How is he doing now? Any problems? Hopefully mine goes just as smoothly.

I really am excited (and nervous!!) for this surgery. I have been on TPN since July, initially on bowel rest and because I wasn't absorbing nutrients, at all. I dropped 30 pounds in about two months, very rapidly. They considered doing the surgery then but I was so weak and malnourished that recovery would have been very difficult, so now I'm on TPN for surgery preparation. Oh, And if I did eat, it would go right out the other end. TPN, although it has practically saved my life, has been such an emotional and social killer. I cannot wait to get my life back and most importantly - EAT FOOD!! I haven't eaten since July and it's mid October now (with the exception of a bite of bread but that would cause me pain too, how pathetic). I really dream of food and getting back to a normal life.

 

[alisonp]

I had the same surgery that you're about to have. Do you have any specific questions or concerns?

How did it go for you?? My main question would be how was your recovery? I won't know if my surgery will be done laparoscopically or open surgery until I wake up, and I know that the recovery time span for both is quite different

 

[Scroome]

Hey Alison,

I'm going in for exactly the same surgery as you, in December. I hope it all goes really well for you and a quick recovery.

I'm nervous like you, but I'm so tired of eating white rice and applesauce that I'm kind of welcoming the surgery now

Fingers crossed!

 

[DEmberton]

I had the same (done laparascopically). 4 days in hospital and then I was sent home with painkillers, but I found I only needed them for another 4 or 5 days. After 2 weeks I was getting more or less back to normal and went back to work after 3. But I'd still get some pain when moving around and it was about 6 weeks before I felt comfortable doing anything at all strenuous.

So not too bad at all for me. You will be quite weak though, and you shouldn't try and rush it. Eating properly again was great. I piled on the pounds and got back most of the weight I'd lost over 2 years in the first 2 months.

Hope it goes well for you.

 

[alisonp]

Hey Alison,

I'm going in for exactly the same surgery as you, in December. I hope it all goes really well for you and a quick recovery.

I'm nervous like you, but I'm so tired of eating white rice and applesauce that I'm kind of welcoming the surgery now

Fingers crossed!

Thank you so much!! Currently enjoying my last night in my own bed for a while. I'm trying to enjoy the fact that I can get some sleep as I know that I probably won't be able to get much rest at the hospital with doctors and nurses checking on me. So nervous!!

 

[alisonp]

I had the same (done laparascopically). 4 days in hospital and then I was sent home with painkillers, but I found I only needed them for another 4 or 5 days. After 2 weeks I was getting more or less back to normal and went back to work after 3. But I'd still get some pain when moving around and it was about 6 weeks before I felt comfortable doing anything at all strenuous.

So not too bad at all for me. You will be quite weak though, and you shouldn't try and rush it. Eating properly again was great. I piled on the pounds and got back most of the weight I'd lost over 2 years in the first 2 months.

Hope it goes well for you.

I'm glad that you had a smooth experience and that everything went well!! I'm mainly excited about being able to eat again and to get off of TPN. I've missed food so much, I'm worried that I am going to want to try and rush it and eat ASAP but I have to try to keep reminding myself to take it slow

 

[Jennifer]

How did it go for you?? My main question would be how was your recovery? I won't know if my surgery will be done laparoscopically or open surgery until I wake up, and I know that the recovery time span for both is quite different

My story is in the link I posted but I will say that I did have an infection at the surgical site mainly because I was still on steroids at the time. Dealing with that took over a month but I've been in remission ever since my surgery in 1999. Good luck!

 

[alisonp]

Surgery went successful, removed about 24 inches of bowel, more than expected. Had some complications (I have a scary story about getting my epidural if anyone is interested). It's 8 days post op and I'm getting pains, not incisional pains but they feel like my "Crohn's pain" and I'm in disbelief. How long was it before any of you began treatment post surgery? I'm going to be starting Humira instead, and have to go through insurance and all that stuff so I suspect it will take a while

 

[Jennifer]

I continued with 6MP after my resection. I can't remember exactly which day but I don't imagine it was that long after.

Many people feel some abdominal pain after surgery so it's possible that it may not be Crohn's related. You're only 8 days post op so keep track of the pain and let your doctor know if it starts to get worse.

Was yours mainly laparoscopic or do you have a larger scar? I'm glad that it was successful, sorry about any issues with the epidural (I didn't have one). My sister had one when she was having her baby and they had the hardest time getting it in (they kept hitting her spine, dunno how many attempts but it was bad). I hope you aren't hurting too much from that as well as your abdominal pain. You're welcome to share the full story if you're feeling up to it.

 

[Thunderguts]

Hi Alison. Hope you are healing well and not taking it too fast. I'm due in a fortnight for same surgery so am reading all the threads. Can I ask were you told before or after surgery about ongoing treatment? I've not had anything like that mentioned yet I've got pre op this Tuesday so will ask then. Sending healing thoughts, Jo

 

[alisonp]

I continued with 6MP after my resection. I can't remember exactly which day but I don't imagine it was that long after.

Many people feel some abdominal pain after surgery so it's possible that it may not be Crohn's related. You're only 8 days post op so keep track of the pain and let your doctor know if it starts to get worse.

Was yours mainly laparoscopic or do you have a larger scar? I'm glad that it was successful, sorry about any issues with the epidural (I didn't have one). My sister had one when she was having her baby and they had the hardest time getting it in (they kept hitting her spine, dunno how many attempts but it was bad). I hope you aren't hurting too much from that as well as your abdominal pain. You're welcome to share the full story if you're feeling up to it.

My surgery was laparoscopic but they had to remove more than expected so I have a larger scar than you would expect for a laparoscopic surgery, but not quite as big as an open surgery wound. Apparently some of my small bowel was so inflamed and had nowhere to go that it was wrapping around the beginning of my colon like a big ball! Yikes! And about the epidural, I had the same experience as your sister. They numbed my lower back and tried twice but hit bone both times. So they decided to try higher up (basically in between my shoulders; it was so high) They forgot to numb that area and they hit bone again. Last thing I remember was screaming so loud in pain and either passing out or becoming sedated, I woke up after the surgery was done. I was supposed to wake up around noon but wasn't up until 3:30.. According to my mother, I had several doctors around me asking if I was able to move my feet.. Scary

 

[alisonp]

Hi Alison. Hope you are healing well and not taking it too fast. I'm due in a fortnight for same surgery so am reading all the threads. Can I ask were you told before or after surgery about ongoing treatment? I've not had anything like that mentioned yet I've got pre op this Tuesday so will ask then. Sending healing thoughts, Jo

My GI had planned to continue me on Remicade after surgery but then changed his mind and decided I try Humira instead because Remicade never really worked well for me anyways so he decided to just start fresh and new. Although I did have a scary experience with the epidural, I am forever thankful I got this surgery as I already do feel better. I am 9 days post op and I don't take any pain meds anymore. I was only on Tylenol 5/6 days post surgery. I had a scare that I was having Crohn's pain again but it was just my period! Haha! It was unexpected as I am on the Depo shot for birth control so I very rarely get my period. Thank you for your kind thoughts and I do hope your surgery goes smoothly!

 

[Jennifer]

That is scary, I'm glad it didn't cause permanent damage. *HUGS*

My surgery was laparoscopic with hand assist so I also have a larger scar about 4 inches long. I also slept longer. They had to wake me up in my room (left recovery hours before) to make me get up to go pee because they didn't give me a cath. Worst pain ever! I do not recommend getting out of bed hours after surgery. It's common to get a cath these days though. I'm sure the epidural hitting bone hurt worse though because I didn't pass out but I almost threw up and the pain from wretching almost made me pass out.

You're healing well so far though? No sign of infection?

 

[alisonp]

That is scary, I'm glad it didn't cause permanent damage. *HUGS*

My surgery was laparoscopic with hand assist so I also have a larger scar about 4 inches long. I also slept longer. They had to wake me up in my room (left recovery hours before) to make me get up to go pee because they didn't give me a cath. Worst pain ever! I do not recommend getting out of bed hours after surgery. It's common to get a cath these days though. I'm sure the epidural hitting bone hurt worse though because I didn't pass out but I almost threw up and the pain from wretching almost made me pass out.

You're healing well so far though? No sign of infection?

I'm so surprised that you didn't have a catheter and they made you get up to go to the bathroom only hours later! That's crazy! The catheter was my favorite. So convenient. I was actually sad when they took mine out, haha! And yes I'm healing just fine, no sign of infection which I am very happy about!

 

[Thunderguts]

My GI had planned to continue me on Remicade after surgery but then changed his mind and decided I try Humira instead because Remicade never really worked well for me anyways so he decided to just start fresh and new. Although I did have a scary experience with the epidural, I am forever thankful I got this surgery as I already do feel better. I am 9 days post op and I don't take any pain meds anymore. I was only on Tylenol 5/6 days post surgery. I had a scare that I was having Crohn's pain again but it was just my period! Haha! It was unexpected as I am on the Depo shot for birth control so I very rarely get my period. Thank you for your kind thoughts and I do hope your surgery goes smoothly!

I'll make sure to write him a good long list for Tuesday Lol he loves me wandering in with a notebook I've never been on any maintenance medication, even though I've been symptomatic for over 20 years I've only just been officially diagnosed two months ago so I've always been full flare and whacked on Pred in the past I'll have a good chat with him. Fab you're doing better, and not needing pain meds is a great indicator. I am dreading the epidural but looking forward to not feeling so crappy all the time. Hope every day is better and better for you