# Terminal ileum fistula surgery



## PonchoRider1389

Hey guys! I've been reading a lot of forums lately and have some questions. I've had Crohn's now for 15 years. 30 years old, fit and active. 2009 I had air come out when I peed. Didn't hurt or think anymore of it. Fast forward to 2016 and I had lots of air and nasty UTI's. WBC over 100+. Multiple hospital stays. Well, fast forward to now. May 22nd 2017. I am scheduled for an open resection surgery on July 27th. The terminal is very narrow and also has created a fistula to my bladder thus causing the UTI's. Also small fistula attached to the Sigmoid but he said that happens and he can pull it off and stitch it. So he wants to resect my terminal ileum, valve, appendix and cecum. I am currently on Humira and Imuran and they are working great but wants me to stop them two weeks before and start up a month after surgery. So my questions are. 

Has anyone had this type of surgery? 
How was the D after? 
How quick before it went back to nomal? 
Did you take any meds to help with D and stool formation after? 
Should I stop the meds before surgery? Or should I stay on them? 

And did anyone have any complications after this surgery? 

Thanks guys. That was just a highlight of everything.


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## Quixote

I had this surgery in August. Only thing I didn't have was the fistula connection to the bladder mine second connection was moving toward pancreas. 
D wasn't that bad after. Had normal movements in 4 - 6 weeks I believe. There was some urgency and some blood right afterward, but all that seemed to clear up pretty quickly.
I didn't take any meds after surgery, just used essential oils to help with some of the digestive issues, didn't really want hard stools soon after anyway due to soreness. 
The reason they want you to stop the meds before surgery is so that the build up wears off and your body's healing won't be inhibited by them.
The staples aren't too fun but I do feel much better now. Just keep a pillow around you to hang on to right afterward.


I got to try a new pre-surgery method in Akron that is starting to spread around and I think it really did help me heal faster. If you are interested look up ERAS. If you can talk the surgeon in to trying it I think you'll benefit greatly.


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## ronroush7

Hi.  I had a resection in 2010 where they took the terminal ileum and a small part of the colon. The bladder was not involved.   It took a few weeks after surgery for the diarrhea to settle afterwards.   I think you should stop the medicine.  Sending support.


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## JessPeper

PonchoRider1389 said:


> Hey guys! I've been reading a lot of forums lately and have some questions. I've had Crohn's now for 15 years. 30 years old, fit and active. 2009 I had air come out when I peed. Didn't hurt or think anymore of it. Fast forward to 2016 and I had lots of air and nasty UTI's. WBC over 100+. Multiple hospital stays. Well, fast forward to now. May 22nd 2017. I am scheduled for an open resection surgery on July 27th. The terminal is very narrow and also has created a fistula to my bladder thus causing the UTI's. Also small fistula attached to the Sigmoid but he said that happens and he can pull it off and stitch it. So he wants to resect my terminal ileum, valve, appendix and cecum. I am currently on Humira and Imuran and they are working great but wants me to stop them two weeks before and start up a month after surgery. So my questions are.
> 
> Has anyone had this type of surgery?
> How was the D after?
> How quick before it went back to nomal?
> Did you take any meds to help with D and stool formation after?
> Should I stop the meds before surgery? Or should I stay on them?
> 
> And did anyone have any complications after this surgery?
> 
> Thanks guys. That was just a highlight of everything.


I had an open resection in March. The D after only lasted two weeks. I didn't have to take any medications to get the stool back to normal. They may be telling you to stop your medication because they will slow your healing process. I'm currently dealing with a open wound on my stomach where the stitch knot was located. My surgeon said it is not healing because of the medications I am on. 

 Best of luck to you!


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## PonchoRider1389

Okay great!  Thanks you guys. Sooo would you all say that surgery was worth it? And do you all feel a lot better now? How long did you stay in the hospital after? Was it painful? Did any of you have and complications? If so what?


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## Cheesy79

I was taking Humira before I had a hysterectomy. My doctor made me stay off of it for like 6 weeks before surgery. Humira kills your immune system. So if you were to catch anything, your body wouldn't be able to fight it off. I don't know about Imuran. I'm allergic to it. I do know the pains of fistulas. If you can get a doctor to open you up to fix it, DO IT. They kept doing minor surgeries and I suffered for 3 years.


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## Cheesy79

I had MRSA. This was the second time though. My surgery was very different and because it was going to be so painful they planned to put me on the ventilator after surgery for a couple of days. I'm still having pain but after 12 surgeries, you get adhesions and my case is a little bit complicated. Totally worth it. I started feeling sick and then before I knew it I was going downhill so fast.


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## ronroush7

Cheesy79 said:


> I had MRSA. This was the second time though. My surgery was very different and because it was going to be so painful they planned to put me on the ventilator after surgery for a couple of days. I'm still having pain but after 12 surgeries, you get adhesions and my case is a little bit complicated. Totally worth it. I started feeling sick and then before I knew it I was going downhill so fast.


I am sorry.


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## JessPeper

PonchoRider1389 said:


> Okay great! Thanks you guys. Sooo would you all say that surgery was worth it? And do you all feel a lot better now? How long did you stay in the hospital after? Was it painful? Did any of you have and complications? If so what?


 I was in the hospital for 5 days. I'm not going to lie it was painful but I don't have a very high tolerance for pain. My one word of advice when they ask you to get up and walk and pass gas do it. The gas pain is way worse than the normal surgery pain. I had a few complications but they were all with the healing process and my medications are to blame for that. 

 I would say it is totally worth it!


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## DEmberton

I had a fistula to sigmoid colon (that they didn't know about beforehand), as well as the TI and valve chopped out.

Mine was laparascopic; presumably open surgery is going to take a bit longer to recover from. I was more or less back to normal after 2 weeks, though still took it easy for another 4.


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## PonchoRider1389

Okay great guys. Few more questions lol. Did any of you have to have a tube in the nose before, during or after surgery? And also I will need a foley where the urologist surgeon will stitch up my bladder. Probably two weeks. Anyone have to deal with that before?


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## ronroush7

It seems like I remember a tube in my nose before surgery.


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## JessPeper

PonchoRider1389 said:


> Okay great guys. Few more questions lol. Did any of you have to have a tube in the nose before, during or after surgery? And also I will need a foley where the urologist surgeon will stitch up my bladder. Probably two weeks. Anyone have to deal with that before?


 
 Breathing tube? They do put that down your throat. I was told it is protocol that any time they do an epidural now that you have a foley in. The took it out the day before they let me come home.


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## PonchoRider1389

DEmberton said:


> I had a fistula to sigmoid colon (that they didn't know about beforehand), as well as the TI and valve chopped out.
> 
> Mine was laparascopic; presumably open surgery is going to take a bit longer to recover from. I was more or less back to normal after 2 weeks, though still took it easy for another 4.


Hey man. Did they just stitch your sigmoid or resect?


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## PonchoRider1389

JessPeper said:


> Breathing tube? They do put that down your throat. I was told it is protocol that any time they do an epidural now that you have a foley in. The took it out the day before they let me come home.


A nasogastric tube In the nose to the stomach is what I meant.


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## PonchoRider1389

JessPeper said:


> Breathing tube? They do put that down your throat. I was told it is protocol that any time they do an epidural now that you have a foley in. The took it out the day before they let me come home.


Did you have an epidural? And how was that? Worth it?


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## PonchoRider1389

Also how does everyone feel after surgery? Did you go back on meds? Has the Crohn's reoccurred any??


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## ronroush7

Yes.  Crohns reoccurred for me and I never went off of medicine.


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## PonchoRider1389

ronroush7 said:


> Yes.  Crohns reoccurred for me and I never went off of medicine.


When did it reoccur? How long after surgery? And what meds you on?


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## ronroush7

I had a resection in 2010.  Not sure about the timing but I know they found active Crohns at the end of 2015.  I just started on Entyvio.  I am also on imuran, Colestipol and Lialda for the Crohns.  I take Sythroid for my thyroid and Gabspentin for neuropathy.


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## DEmberton

PonchoRider1389 said:


> Hey man. Did they just stitch your sigmoid or resect?


They didn't remove any of the colon if that's what you mean. I remember the notes said something like "wedge and block" - whatever that is.

I felt great for about 3 months, then minor symptoms started to creep back. 1 year colonoscopy showed some evidence of inflammation in the TI again, but I avoided meds for another year, and after 6 months on Azathioprine it seemed to settle down. Now after nearly 3 years I only have occasional mild symptoms. Hopefully that's how it'll stay.


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## JessPeper

PonchoRider1389 said:


> Did you have an epidural? And how was that? Worth it?


 I did not have the tube in my nose. I wasn't given an option of whether I wanted the epidural or not. I was talk they were doing it, they left it in until the day before I went home with a monitored flow of pain medication. I would say this it's worth it. I guess I wouldn't have wanted to see what would have happened when the pain meds wore off. I imagine it wouldn't have been very pleasant.


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## JessPeper

PonchoRider1389 said:


> Also how does everyone feel after surgery? Did you go back on meds? Has the Crohn's reoccurred any??


 
 I am still healing from my surgery but overall I feel much better than before! I am still taking my medications and plan to start a biologic to help combat if the disease if it decides to rear its ugly head again!


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## PonchoRider1389

Sooooo it sounds like to me that everyone feels better from having the surgery. Yes? That's good. I've got two months. Another question did anyone go on a low residue diet a week or so before surgery? Or a liquid diet a week before? I am planning on cleaning myself out like this a week before


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## JessPeper

PonchoRider1389 said:


> Sooooo it sounds like to me that everyone feels better from having the surgery. Yes? That's good. I've got two months. Another question did anyone go on a low residue diet a week or so before surgery? Or a liquid diet a week before? I am planning on cleaning myself out like this a week before


 I had been on a low residue diet before hand anyway. You'll be cleaned out afterward...trust me! lol


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## PonchoRider1389

JessPeper I was going to ask how long ago was your surgery? And what are you eating right now through your recovery?


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## JessPeper

My surgery was 9 weeks ago yesterday. I've been able to eat pretty much anything I care to try. Only thing I've noticed bothers me is greasy foods. I graze most of the day and try to avoid large meals I noticed when I eat more than a child sized portion I get bloated and uncomfortable.


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## PonchoRider1389

Thanks JessPeper You're 9 weeks out. Sooo how are you feeling overall? Soreness still? Pain still? D still? How is the scar? Fatigue? Any signs of recurrence?


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## JessPeper

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.


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## rorho19

Jess, if you are grazing all the time are you putting weight back on now?


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## JessPeper

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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## rorho19

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.


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## PonchoRider1389

JessPeper said:


> 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?


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## JessPeper

PonchoRider1389 said:


> 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.


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## rorho19

Ah actually I think the lack of planning is more than outweighed by the blissful ignorance and therefore no anxiety beforehand


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## JessPeper

rorho19 said:


> 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.


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## rorho19

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!


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## JessPeper

rorho19 said:


> 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!


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## PonchoRider1389

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.


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## JessPeper

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!


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## PonchoRider1389

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?


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## JessPeper

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!


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## PonchoRider1389

Oooh please not the wings. Aghhhh! Lol. So when do you feel like you will be able to go back to eating bigger meals?


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## JessPeper

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!


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## PonchoRider1389

Hmmm I see. You had a open surgery to remove your TI, valve, appendix and cecum correct? That's it?


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## JessPeper

Yes, open surgery and yep that was it. I didn't have a fistula just a stricture that turned into a blockage.


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## PonchoRider1389

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.


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## Quixote

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.


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## ronroush7

Quixote said:


> 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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## JessPeper

PonchoRider1389 said:


> 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!


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## PonchoRider1389

Quixote said:


> 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.


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## PonchoRider1389

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.


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## JessPeper

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!


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## PonchoRider1389

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?


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## JessPeper

Definitely feel better! You'll do just fine and be glad you did it!


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## PonchoRider1389

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?


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## JessPeper

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


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## PonchoRider1389

JessPeper said:


> 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?


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## JessPeper

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!


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## PonchoRider1389

Hey JessPeper! How is the recovery going?


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## JessPeper

PonchoRider1389 said:


> Hey JessPeper! How is the recovery going?


 Hey!!! I was recently wondering how you were faring as well! 

 My recovery is coming along! My incision is almost all the way closed up about a week or so left and it should be all closed up! I'm excited for it to be over with. I've slowly started to do some exercises to strengthen my stomach muscles! 

 You've got a couple weeks before surgery yet, how are you feeling?


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## PonchoRider1389

Hey there! That is great to hear! My own opinion I would stop taking those meds. That's just me. Find you a good GI doctor and do some research on the right meds you should be on to help. Lol. How is your eating and bowel movement? And yes, I'm little over a month out. Anxiety has been a big problem. I don't know why. What I mean is. I am a very go getter and attack and face the problem and solve it. I've been that but I've allowed anxiety to take more control I'm comfortable with. I have a question. Was your sigmoid colon involved in anyway?


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## Quixote

PonchoRider1389 said:


> 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.



Open surgery TI valve appendix and beginning of colon removed and resected due to small perforation along with fistulas. The ERAS ( https://www.google.com/url?sa=t&source=web&rct=j&url=http://www.hopkinsmedicine.org/news/publications/johns_hopkins_surgery/johns_hopkins_surgery_summer_2014/a_quicker_recovery_after_colorectal_surgery_the_eras_pathway&ved=0ahUKEwi39uqlrcLUAhUDPT4KHXPbAmQQFgiPATAJ&usg=AFQjCNECOVCT0A90uHlElvQ0Wo2tgwQSCw&sig2=lUvcjzlS4Up32W4v2AiDEQ ) protocol is vwry different from the old way of preparing for and recovering from surgery. It is still vwry new and just catching on. I was actually the first one in Akron to hive it a go. The have done some at Johns Hopkins and Cleveland clinic now as well. The nerve blick really did a great job with the pain. I did take one vicodin afterwards but other than that stuck to the tylenol. The lack of opioids hwts the bowels movingmg quicker. Being able to eat sooner also helps the body with the healing process. Check out the link if you have time. I wholly recommend it.


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## JessPeper

PonchoRider1389 said:


> Hey there! That is great to hear! My own opinion I would stop taking those meds. That's just me. Find you a good GI doctor and do some research on the right meds you should be on to help. Lol. How is your eating and bowel movement? And yes, I'm little over a month out. Anxiety has been a big problem. I don't know why. What I mean is. I am a very go getter and attack and face the problem and solve it. I've been that but I've allowed anxiety to take more control I'm comfortable with. I have a question. Was your sigmoid colon involved in anyway?


 
 My eating is pretty good. I learned the hard way that I should still stay away from Red meat. Couple weeks ago we had steaks for supper. I was up in the night with the worst belly ache and felt nauseous, it was the same way I felt before I went to the ER the day of my resection. That flashback was enough to scare me away from it for a long while.  My bowel movements are normal. I've not been so regular in my life! 

 I'm more afraid to stop the medication than anything. I know they claim all the active Crohns has been removed but I have little faith in my GI. I have an appointment scheduled with a new GI for a consult. The GI I currently see is the only one in town the next closest GI clinic is an hour away. There was a waiting list to be seen, I have an appointment in August 

 From what I've read on my procedure and pathology stuff my sigmoid was not involved. I didn't even realize they took my appendix until I read the pathology report. I think what bothers me most about doctors is you pay for all these tests and they these very in depth results and they share half of the information with you. 

 Have you tried taking anything for the anxiety? Its hard to take control on something you have no control over! Just roll with the punches and stay the heck away from google. Google was my worst enemy! I watched a you tube video of an ileocecectomy ...scared for life! lol


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## PonchoRider1389

That's good on the eating. And also good on the meds and GI. and see my sigmoid and bladder are involved. I have a fistula connected to each one. It's through to the bladder. He said the sigmoid likes to flop over there in the way. He said the last test I did that it wasn't all the way thru in the sigmoid. So pull it apart and stitch it. And I love researching. It helps me. I can basically do the surgery myself. Lol. He calls me the specialist. Said he wanted to get me a lab coat so I can teach his interns. Really impressed with my knowledge. So you wonder why all the questions on here. Because I just want to hear people's experiences. It's a comfort.


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## JessPeper

It's good to be well educated. The information I've found in this forum is better than anything I've found on google!  It was nice to know  I'm not alone! My mom has CD she hasn't taken meds for it for years and she always tells me how bad her CD is and it really makes me angry. Maybe this disease has made me bitter but when she tells me she's having a bad crohns day I have to bite my tongue. No meds never had surgery. In the last few months it's really bothered me especially because of the healing issues. Ahh rant over! Lol 

Did they tell you how long you'd have to stay in the hospital?


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## PonchoRider1389

is your mother stubborn? Has she not been to a GI? Or had a colonoscopy? And well, 5-9 days. I'll have a catheter for at least 2 weeks depending on how much work is done to my bladder.


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## JessPeper

Ehh I don't know if stubborn is what I'd call her. She eats what she wants and then whines about it later. She takes all kinds of other medications but won't take meds for the CD. She's been to a GI same one I see now. She was diagnosed 20 years ago.

That's not so bad. Thank goodness for insurance. I got my EOB for my 5 day stay and it was close to 40 grand!


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## ronroush7

JessPeper said:


> Ehh I don't know if stubborn is what I'd call her. She eats what she wants and then whines about it later. She takes all kinds of other medications but won't take meds for the CD. She's been to a GI same one I see now. She was diagnosed 20 years ago.
> 
> That's not so bad. Thank goodness for insurance. I got my EOB for my 5 day stay and it was close to 40 grand!


I am so sorry


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## PonchoRider1389

Heyyyy everyone! My surgery got pushed back to August28th. Soo. It's actually better for myself and the surgeon. He was leaving on July 29th. Two days after my surgery and said he wants to be there and didn't want to abandon me. He is fantastic. 

How is the healing JessPeper?


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## JessPeper

That's great that your Dr cares that much! 

I am finally completely healed! It now looks like I have two belly buttons! But if that's the price to pay for being symptom free I'll take it!

How have you been feeling?


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## ronroush7

PonchoRider1389 said:


> Heyyyy everyone! My surgery got pushed back to August28th. Soo. It's actually better for myself and the surgeon. He was leaving on July 29th. Two days after my surgery and said he wants to be there and didn't want to abandon me. He is fantastic.
> 
> How is the healing JessPeper?


Great news.


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## PonchoRider1389

Heyyy, concrete date is the 30th of August now. And I am feeling good. I am putting on a lot of weight. I stop lifting and just trying to get fat so when I do lose weight I'll have extra to lose. Right now  the Humira and Imuran are working great. But, I still have the occasional pain from the fistula. The other day I had air when I peed again. First time in several months. It's funny. I've been peeing air like this since 2009.  Sometimes once a year and sometimes several times a year. Crazy how long it's been there. The other day also some UTI symptoms reoccurred. But, doubled up on my antibiotics and drank more water. Feeling better now. I kinda know the routine now. Every several months I'll have an episode and go nNPOand more fluids. So, yeah I'm feeling good. Anxiety levels are way down for the last bit. Now if I could just get rid of all the lady problems I'd be doing okay. Hahaha.


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## JessPeper

Haha! Glad to hear you're doing well!  Good luck with the lady problems!!


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## PonchoRider1389

Hahha that will never go away. Lol. But, anxiety is coming and going here lately. But, all and all I'm doing okay. Are you fully healed JessPeper ??


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## JessPeper

I am fully healed! My muscles ache now and then. Mostly when I try to do too much. It's hard to know when to just stop!  

I know it's easier said than done but just try not to think about things! It'll all work out for the best!


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## ronroush7

I am glad you are fully healed, Jesspepper


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## JessPeper

ronroush7 said:


> I am glad you are fully healed, Jesspepper


Thanks Ron!! Me too!


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## PonchoRider1389

DEmberton said:


> I had a fistula to sigmoid colon (that they didn't know about beforehand), as well as the TI and valve chopped out.
> 
> Mine was laparascopic; presumably open surgery is going to take a bit longer to recover from. I was more or less back to normal after 2 weeks, though still took it easy for another 4.


Hey what did they do to the fistula to sigmoid? Stitch it? Or?


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## PonchoRider1389

JessPeper said:


> I am fully healed! My muscles ache now and then. Mostly when I try to do too much. It's hard to know when to just stop!
> 
> I know it's easier said than done but just try not to think about things! It'll all work out for the best!


I'm happy to hear you are healed that's awesome. I'll be keeping you updated as time goes on.


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## JessPeper

PonchoRider1389 said:


> I'm happy to hear you are healed that's awesome. I'll be keeping you updated as time goes on.


Sounds good! Try not to stress about it too much!


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## PonchoRider1389

Heyyyy everyone. Surgery has been pushed back all year. Then my perfect surgeon moved away. So now I see a new surgeon on October 12th. Then surgery is set for November 8th. I have been in and out of the hospital. Staying a week at a time. Keeping things under control till surgery. I can't wait to feel better and recovery and get back at it. Just thought I would give a quick update.


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## ronroush7

I am hoping the best  for you.


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## PonchoRider1389

Hey, everyone! 

Finally after a 2 year process I had my surgery 11 days ago. 
I had Crohn’s disease of the terminal ileum for 16 years. I had severe narrowing and multiple fistulas from small bowel to small bowel to small bowel to bladder to small bowel to sigmoid colon. The surgeon said it was a nasty beast to remove. 

I was originally told open surgery and bladder repair and sigmoid repair or possible resection of the sigmoid. My new surgeon done it all lap. And I didn’t need to have my bladder or sigmoid repaired. The fistula to the bladder was nasty so my bladder is healing. But, all in all it was a success. My bowel movements have been fine. Still pain when I have a bowel movement or pee. But, that’s getting better each day. I won’t lie the pain I was in when I woke was really really terrible. I was waiting on my PCA pump and a nerve block. So they for some reason wouldn’t give me anything for pain for what felt like hours. But, pain pumped help a lot. And coming off it was rough. 

Walking and such wasn’t too bad. Gas pain was terrible. Recovery in the hospital for 8 days. It was rough at times. But, rocked it. I start back Humira in a 2 days. AZA next week to help any reoccurrence. But, of this moment I am Crohn’s free for the first time in 16 years. Eat healthy, workout, move, be adventurous and stay consistent on your Meds and all will be well. I look forward to fully recover. I can already feel a difference. 

I would tell anyone questioning surgery to have the surgery. 

Fistulizing Crohn’s Disease 
Diagnosed 2003 
Humira 40mg once a week. 
AZA 150mg a day 
Ileocecal ResectionFeb 23rd 2018.


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## ronroush7

PonchoRider1389 said:


> Hey, everyone!
> 
> Finally after a 2 year process I had my surgery 11 days ago.
> I had Crohn’s disease of the terminal ileum for 16 years. I had severe narrowing and multiple fistulas from small bowel to small bowel to small bowel to bladder to small bowel to sigmoid colon. The surgeon said it was a nasty beast to remove.
> 
> I was originally told open surgery and bladder repair and sigmoid repair or possible resection of the sigmoid. My new surgeon done it all lap. And I didn’t need to have my bladder or sigmoid repaired. The fistula to the bladder was nasty so my bladder is healing. But, all in all it was a success. My bowel movements have been fine. Still pain when I have a bowel movement or pee. But, that’s getting better each day. I won’t lie the pain I was in when I woke was really really terrible. I was waiting on my PCA pump and a nerve block. So they for some reason wouldn’t give me anything for pain for what felt like hours. But, pain pumped help a lot. And coming off it was rough.
> 
> Walking and such wasn’t too bad. Gas pain was terrible. Recovery in the hospital for 8 days. It was rough at times. But, rocked it. I start back Humira in a 2 days. AZA next week to help any reoccurrence. But, of this moment I am Crohn’s free for the first time in 16 years. Eat healthy, workout, move, be adventurous and stay consistent on your Meds and all will be well. I look forward to fully recover. I can already feel a difference.
> 
> I would tell anyone questioning surgery to have the surgery.
> 
> Fistulizing Crohn’s Disease
> Diagnosed 2003
> Humira 40mg once a week.
> AZA 150mg a day
> Ileocecal ResectionFeb 23rd 2018.


I am glad you are doing so well.


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## cmack

Great news Poncho Rider! I hope you remain healthy in the future.


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