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Crohn's Disease Forum » Surgery » Terminal ileum fistula surgery


 
05-25-2017, 05:21 AM   #31
JessPeper
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I lost 20 lbs after surgery and put back on 8. Before my surgery I didn't have D I was C all the time because of the sticture. I had some weight to spare lol

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Dx with CD 4/16

Ileocecectomy 3/17

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05-25-2017, 05:58 AM   #32
rorho19
 
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Oh right - having gone form 14.5 stone to 13 in 3 years I would be hoping to get back to about 14 in the long run- once I start eating well again.
05-25-2017, 09:50 AM   #33
PonchoRider1389
 
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Overall not terrible. I still have an open wound at the end of the incision. I've been packing for about 6 weeks. My surgery was done emergency so I wasn't able to stop my medications. The D stopped after 2 weeks. I have "normal" bms now. My advice would be to walk as much as you can tolerate, follow the weight restrictions and make sure you have lots of pillows when you come home from the hospital. My whole body hurt from laying in a bed so long the pillows help to get you a comfy position in bed. I would avoid a recliner unless you have someone to help you out of it. You use your stomach muscles too much otherwise. Ooh last drink lots of water.
Sooo I see. So your wound hasn't fully healed because you didn't go off your meds. I see. Thanks for all you comments and advice. Is there anything else you would suggest? Or may have left out?
05-25-2017, 10:02 AM   #34
JessPeper
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Sooo I see. So your wound hasn't fully healed because you didn't go off your meds. I see. Thanks for all you comments and advice. Is there anything else you would suggest? Or may have left out?

My surgeon says its because of the meds. I plan to start cimzia as well but she advised I wait until my belly is healed. The hole went all the way down to the muscle it was 2 and a half inches deep its healing just very slowly. Its took a while before the muscles weren't tender too. I think part of that was self inflicted, I came back to work after only three weeks.

If you have to go back to work wait until your body is ready. Get up and walk but don't push yourself.

Maybe stock up on foods at home that would fit the surgical soft diet that they'll recommend you to stick to for a bit.

Every person is different so you may have to issues at all. You're lucky you get to plan for this. I didn't have a chance to plan, I went to the er with stomach pain and vomiting and didn't leave the hospital for 5 days.
05-25-2017, 10:05 AM   #35
rorho19
 
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Ah actually I think the lack of planning is more than outweighed by the blissful ignorance and therefore no anxiety beforehand :-)
05-25-2017, 10:13 AM   #36
JessPeper
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Ah actually I think the lack of planning is more than outweighed by the blissful ignorance and therefore no anxiety beforehand :-)
The anxiety of figuring out how you're going to manage once you get home wasn't super. My son was stressed out, he told me once I was home he was glad he had a mom again. Made me feel terrible. Made me realize that we're not the only ones going through it, although not experiencing it first hand our loved ones are affected too.
05-25-2017, 10:18 AM   #37
rorho19
 
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Yes, I understand as a Mom it must have been hard for you but the lovely thing about that is it tells you how much he loves you and missed you. I recently had a e-mail from my 24 year old youngest son in reply to my mail to him about being there for his Mom when I am in hospital ...he signed it "Thinking of you always." - and they say guys are all closed in and cold!
05-25-2017, 10:24 AM   #38
JessPeper
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Yes, I understand as a Mom it must have been hard for you but the lovely thing about that is it tells you how much he loves you and missed you. I recently had a e-mail from my 24 year old youngest son in reply to my mail to him about being there for his Mom when I am in hospital ...he signed it "Thinking of you always." - and they say guys are all closed in and cold!
So very true! I am lucky to have him. Not all guys are closed and cold! That's for sure!
05-27-2017, 08:41 PM   #39
PonchoRider1389
 
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Okay thanks a lot for responding. I'm 2 months out. Right now my UTI is acting up and it's funny I can feel my fistula and where it's in my ileum I feel air go thru into my bladder almost like a kick. So I'm a big eater. I'm a bodybuilder and I've noticed where my ileum is narrow that I can't eat too big anymoreniw without cramps, D and pain. It affects the fistula and my bladder and my ileum. Soo I'm looking forward to feeling better after the surgery. How is your recovery going still JessPeper? .


Oh and also I'm on Humira and it's working but I have to stop it 2 weeks before surgery. I already know I have go NPO several days and eat really soft. To prevent a flare up and inflammation.
05-27-2017, 08:53 PM   #40
JessPeper
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My recovery is going well. After almost 10 weeks I'm finally starting to feel good. It's an amazing feeling to feel healthy and be able to do things without getting super exhausted. It has been a rough road but it was worth it! Hopefully within the next week or two my incision will be completely healed and I can move on altogether until the next flare. Hopefully that's not for a super long time!!

I'm definitely not a body builder but I sure was an eater! Having to cut back of the amount I eat has been an adjustment!

05-27-2017, 10:56 PM   #41
PonchoRider1389
 
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Heyy thanks JessPeper. . Sooo when do you think or plan on eating normal again? Have you already started? Or? And could tell me your routine eating the last 9 weeks after surgery? Tips? Tricks? Soft high calorie foods? And do you plan on going back to eating how you did before you got sick?
05-27-2017, 11:09 PM   #42
JessPeper
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The last nine weeks I've really eaten anything I've wanted. Just in way smaller portions. The first couple of weeks you probably won't have much of an appetite so high calorie soft foods would probably be a good idea. The first real food I got to have was 4 days after surgery, let me tell you mashed potatoes and gravy never tasted so good! I'm still eating food I enjoyed before minus super greasy stuff and hot wings. Wings Wednesday are not the same when you can't have wings! Lol The only thing I would say is only eat as much as you think you can tolerate the bloated, full feeling stinks!

05-27-2017, 11:23 PM   #43
PonchoRider1389
 
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Oooh please not the wings. Aghhhh! Lol. So when do you feel like you will be able to go back to eating bigger meals?
05-27-2017, 11:26 PM   #44
JessPeper
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I really don't know. When I do try to eat more I just end up feeling over full and sick. It doesn't take much to feel full. My stomach definitely shrunk!

05-27-2017, 11:52 PM   #45
PonchoRider1389
 
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Hmmm I see. You had a open surgery to remove your TI, valve, appendix and cecum correct? That's it?
05-27-2017, 11:58 PM   #46
JessPeper
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Yes, open surgery and yep that was it. I didn't have a fistula just a stricture that turned into a blockage.

05-28-2017, 12:10 AM   #47
PonchoRider1389
 
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I see I see. So emergency surgery? Sorry to hear that. Yeah I am narrow but no obstruction. Just the fistula causing me UTI's. But, I am having the same surgery. But I will have my bladder stitched and a foley fir a few weeks. Now, when I eat a lot. It's slow digesting because of the narrowing. Makes for a rough night like tonight lol. But I'm learning more and more to eat smaller throughout the whole day. You should go back to feeling normal. That full feeling should go around after fully healing.
05-28-2017, 06:19 AM   #48
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I did the ERAS program with my open resection. With the Enhanced Recovery After Surgery program you are supposed to heal faster than normal. They use a nerve blocker for your abdomen so that they barely have to use any N-said. They had me on a low dose Tylenol after surgery was all. I was out in 3 days, but the hardest part was getting up and walking around the day of the surgery. I had to get up and walk five o clock that day. They also wanted me to urinate by then so get the bladder working. This kept me tubeless for the surgery. I thought the best part was being able to eat the day before, just had to skip dinner. The surgery was definitely worth it. I am currently med free since august and hop to stay that way as long as possible.
05-28-2017, 06:24 AM   #49
ronroush7
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I did the ERAS program with my open resection. With the Enhanced Recovery After Surgery program you are supposed to heal faster than normal. They use a nerve blocker for your abdomen so that they barely have to use any N-said. They had me on a low dose Tylenol after surgery was all. I was out in 3 days, but the hardest part was getting up and walking around the day of the surgery. I had to get up and walk five o clock that day. They also wanted me to urinate by then so get the bladder working. This kept me tubeless for the surgery. I thought the best part was being able to eat the day before, just had to skip dinner. The surgery was definitely worth it. I am currently med free since august and hop to stay that way as long as possible.
Be careful. Wish you the best.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-28-2017, 07:32 AM   #50
JessPeper
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I see I see. So emergency surgery? Sorry to hear that. Yeah I am narrow but no obstruction. Just the fistula causing me UTI's. But, I am having the same surgery. But I will have my bladder stitched and a foley fir a few weeks. Now, when I eat a lot. It's slow digesting because of the narrowing. Makes for a rough night like tonight lol. But I'm learning more and more to eat smaller throughout the whole day. You should go back to feeling normal. That full feeling should go around after fully healing.
Yep emergency! Ha! That was my problem too. Until the power went out from storms last night! The foley isn't terrible but I didn't have to have it as long as you!



05-28-2017, 11:17 PM   #51
PonchoRider1389
 
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I did the ERAS program with my open resection. With the Enhanced Recovery After Surgery program you are supposed to heal faster than normal. They use a nerve blocker for your abdomen so that they barely have to use any N-said. They had me on a low dose Tylenol after surgery was all. I was out in 3 days, but the hardest part was getting up and walking around the day of the surgery. I had to get up and walk five o clock that day. They also wanted me to urinate by then so get the bladder working. This kept me tubeless for the surgery. I thought the best part was being able to eat the day before, just had to skip dinner. The surgery was definitely worth it. I am currently med free since august and hop to stay that way as long as possible.
Well, was your surgery lap? Or open? And did you have your TI, valve, appendix and cecum removed? Because what you're saying I find hard to comprehend and not realistic. No offense. Could you explain ? And answer? Thanks.
05-29-2017, 03:31 PM   #52
PonchoRider1389
 
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Okay I have collected a lot of info. One more question for you all. Recovery? Any tips and tricks I need to know? Anything I need to expect while recovering? It's gonna be several weeks to heal I know that. Please share!?! Thanks guys.
05-29-2017, 03:36 PM   #53
JessPeper
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Walk as much as you can but don't over do it! Drink lots of water. The first couple of days you're home I would recommend taking your pain meds regularly or alternate with tylenol. I don't have a high pain tolerance so maybe it'd be different for you!

05-29-2017, 07:45 PM   #54
PonchoRider1389
 
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Okay great. Thanks JessPeper. 10 weeks post op would you say you feel a lot better and glad you had the surgery ? Like you feel yourself getting back to better than normal?
05-29-2017, 07:46 PM   #55
JessPeper
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Definitely feel better! You'll do just fine and be glad you did it!

05-30-2017, 04:06 AM   #56
PonchoRider1389
 
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Thanks very much JessPeper. Anxiety is getting the best of me right now. I'm trying to mentally prepare myself. That something you've dealt with?
05-30-2017, 05:04 AM   #57
JessPeper
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I have anxiety about my incision getting infected all of the time! I didn't have time before surgery to let the anxiety get to me but there are plenty of things now that make me anxious. I was my hands more than the average person. I freak out when the other girl at work comes to work sick and thinks nothing of it. One of these days I'm going to spray her with lysol! Lol

05-30-2017, 09:47 PM   #58
PonchoRider1389
 
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I have anxiety about my incision getting infected all of the time! I didn't have time before surgery to let the anxiety get to me but there are plenty of things now that make me anxious. I was my hands more than the average person. I freak out when the other girl at work comes to work sick and thinks nothing of it. One of these days I'm going to spray her with lysol! Lol
May I ask how your meds has interfered with the healing of your cut? What meds were you on to affect this?
05-31-2017, 05:04 AM   #59
JessPeper
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All I am on at the moment is Lialda. Quite honestly I'm not positive how. My surgeon keeps telling me that the Lialda is the root cause. I had a CT scan done two weeks ago to make sure there wasn't anything wonky going on in there and there's not. What I don't understand is why if I'm technically in remission, won't they let me stop taking the meds and just let the dang thing heal it's really getting old!

06-15-2017, 04:09 PM   #60
PonchoRider1389
 
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Hey JessPeper! How is the recovery going?
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