Nervous about surgery

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chemri

chemri

Joined
Jan 22, 2016
Messages
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Hi everyone,

I've just joined this site as I need to talk this through with someone and doctors are hard to see and I know no one else who can really talk this through with me. Whenever I look online at how it will be I see what I imagine to be worst case scenarios and it's making me nervous.

I was diagnosed with Crohn's in Nov 2015 after having terrible pain, depression and fatigue for years and ignoring it, thinking it was normal(?). Well when I was diagnosed I got put on Prednisone and WOW I FELT AMAZING. I had not felt that good in years. Truly. But the time came to start lowering my dose and sadly the pain came back. I got an MRI which showed that I needed a laparoscopic ileocolic resection due to complex stricture and a fistula had formed. So I booked it for mid Feb thinking YES! FINALLY!! The doc was saying how great people feel after it's done, etc.

So, as I mentioned before now the time is approaching I am looking into recovery time and such and people are sharing no good stories. I start back at uni 10 days after surgery and I don't know if I should be planning to miss those classes. I guess I really want to know the following:

Best case scenario-what is the recovery time? Or perhaps the stages of recovery? When can you stop on bed rest? When can you drive your self around? When can you return to work and study? When can you get back to sport?

I feel like I have so many responsibilities for after my surgery, I don't want to fall behind as soon as uni starts, and I don't want to lose my job if I miss too much work!!

I feel worried about how long recovery will take and when I worry about that I worry about what will happen during the surgery! What if it goes badly! What if they find out it is worse than they thought when they open me up! What if all that extends my recovery time!

As you can see, anxious is a good icon to be using for this. I just need some people talking to me, I can't keep reading other people's threads they have created :well: anyway you get the point.

To give you some background about me I am a 21yo otherwise healthy female from New Zealand.
 
Hi Chemri, welcome to the forum! I am in a place just like you. I have been told I need a resection of my splenic flexure and part of the descending colon due to severe strictures. Most people with Crohn's have ileocolic resections so my surgery will be different than what most experience. I have to have 2 surgeries. First to remove part of the colon and create a temporary ileostomy. Second one will be the reversal. I don't have any disease in my ileium and fear cutting there will create an anastomasis site that could stricture and cause problems in the future. I know that they will want me out of bed and walking the second day after surgery. I will be able to drive possibly the second week after surgery if I am on no pain meds. I won't be able to lift more than 10 pounds for weeks. I have to option to work from home for a few weeks which will make it easier. As for returning to sports-I think it depends on what sport. I rock climb and it will be a while before I'll be able to do that :frown:
 
Hey,
I had an illecocal resection 10 weeks ago. I'm afraid the recovery is long! You will feel tired for a long time and feel like you have no energy. I had pain from the wound for about two weeks. I still get the odd twinge now, not bad tho. Also you will get a lot of wind pain so definitely walk as much and quickly as possible to help with this. I was allowed to drive after 4 weeks, it depends when your wound is comfortable enough to not hurt if you have to stop suddenly. I had 7 weeks off work but I felt as though I could have gone back after about 5 weeks. I am still doing part time hours as still find I get tired. Also your bowels will be all over the place while you recover. I have been told this can take 6-12 months to settle back down (I think this is worst case scenario) I have recently started taking medication for to help with this.
Sorry it all doesn't sound good but I would rather have known before my op so I was prepared! Like you I have been told the improvement of life outweighs the pain surgery and recovery so I'm hoping this is the case!
Good luck x
 
Hi, it's great that you've found the forum, there's lots of info and support here!
Sorry that you're having to have surgery. I've had five altogether, one laparoscopic, two laparotomies (open surgeries) and two other ones, so am relatively experienced now.

For the two open surgeries I was in hospital for between 5 and 7 days. It was sore, but not unbearable plus you will get pain relief, they aim to keep you as comfortable as possible.
My first op I had two months off work to recover (I was also getting used to having a Stoma which is why I had so long off), and my second I went back after 6 weeks (I was on my feet most of the day at work, walking around and talking to people so it was hard going back, but my surgeon was happy with my recovery.)

After your op it is really really important to get out of bed, move about as much as you can and sit in the chair next to your bed. I didn't after my first one and it really affected my recovery. After my second I made sure I walked about the ward as much as possible (it felt like the hardest thing ever to begin with, but made such a difference.)

Focus on the end result and how much better you will feel once it's done. That thought kept me going! I don't regret any of my surgeries, they've given me my life back. I personally don't have any fear of having surgery anymore either, I wouldn't be bothered if I had to have another, I know I can cope with the pain and the benefits far outweigh the short term discomfort.

I know I haven't written about laparoscopic surgery, but thought it might calm any worries you get have to know about an experience of open surgery.
I hope it all goes well and you're fighting fit in no time!
 
Hi I had 2 ops in 12mths one for an ileostomy n one to reverse it. I was really really poorly first time so I was of work for 3mths after. I had such severe pain before that op. I have had no pain since . I was off for 2mths with the reversal. I was up out of bed a couple of days later with 1st n next day with 2nd. Walking around really does help. Even if it tires you n hurts a little.
Best wishes, take care n try not to worry.. ☺💖
 
Thank you all for sharing your stories. It's just scary because everyone's experience is different. You never know if you are going to be lucky or unlucky. I'm getting a second opinion at Mayo clinic. I know I have to have a resection; but I want to know if Mayo has a better technique than the colo-rectal surgeon in St. Louis. I just want to make sure I research what will be my best options. I also have no clue how much time to take off. I have 4 weeks vacation and I can split that up and use it for the surgery/hospital time and a week after. My boss has been very understanding and will let me work from home a few weeks(I'm a technical sales specialist so don't have an office to go to). However, if there are complications I'm afraid I'll have to take short term disability which is only 70% of my pay :(
Another question I had-did you need help at home that first week after the hospital? I live alone so trying to prepare in advance.
 
You may need a little help for the first week or so being at home, just with chores, cooking etc as you won't feel like doing much at all. Also some help getting out of chairs & bed makes it slightly easier
 
Eridon2002 said:
Thank you all for sharing your stories. It's just scary because everyone's experience is different. You never know if you are going to be lucky or unlucky. I'm getting a second opinion at Mayo clinic. I know I have to have a resection; but I want to know if Mayo has a better technique than the colo-rectal surgeon in St. Louis. I just want to make sure I research what will be my best options. I also have no clue how much time to take off. I have 4 weeks vacation and I can split that up and use it for the surgery/hospital time and a week after. My boss has been very understanding and will let me work from home a few weeks(I'm a technical sales specialist so don't have an office to go to). However, if there are complications I'm afraid I'll have to take short term disability which is only 70% of my pay :(
Another question I had-did you need help at home that first week after the hospital? I live alone so trying to prepare in advance.
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I would maybe get a second opinion. My crohn's is in the same part that yours is and has a little bit of inflammation in the starting part of the colon. I too have a fistula. I've had problems every 5 to 6 years it seems to flare up. I even had a 14 cm abscess about ten years ago where the intestine was all matted up in. And I was in hospital for two week and I remember they were about to due surgery but my gi at the time put me on iv antibiotics and Iv steroids and it fixed the problem. Now I have had a couple times where it would flare and I always caught it in time and would go on the iv meds for a week as an out patient and I would be good to go in about 2 weeks. But this past year I noticed some pain in my right lower. And just figured it was just so normal crohns pain that I've gotten use to after 17 years. And I found out this October that I should have went in for a check up way before. I ended up with a large abdominal wall abscess that I had to have drained. And when they drained it. 4 days later food that I would eat came out. So it was a fistula. I have surgery as an option but there is also humira, and other drugs that can be used if my infection ever gets under control. My surgeon who in London hospital in Ontario is one of the best and only deals with Crohn's and gastrointestinal surgery still wants to try everything before surgery. I've always been told for 17 years to keep surgery as last ditch effor to fix. But I also know I'm really sick of having stuff come out where it's not suppose to. And especially with news of this anti-map vaccine and Amat treatment with antibiotics. Sorry about the rambling story. Just wanted to let you know there is options. If you have a GI ask questions and tell them what you want done. Surgeons sometimes only want to cut, when GI and ID doctors want to use the medical end of it first.
 
And if you need help at home. I know here in Canada they set up home care or von nurses that come in. I have them come to check my fistula and bring supplies. And they can also administer iv drugs if you would need
 
Thanks Matt, I was hospitalized in April because of an obstruction. I was put on IV steroids and it took 4 days to clear. Horribly painful and scared I was going to have to have a surgery. I was out of town at the time for work so my family was a 9 hour drive away. Since I travel a lot for work this could easily happen again but I could be in the Lincoln NE or Ames Iowa where the my surgical outcome if I have to have emergency surgery might not be as good. Luckily when I had the obstruction on April I was in Rochester MN and went to Mayo. They were very conservative and wanted to see if I could clear the blockage myself before digging in with a scalpel. Sometime you just don't know what the right choice will be. There is nothing clear cut in this disease(other than it sucks). I think I will get 2 home health care nurse visits after surgery and luckily my Dad is retired and can stay and help me post op.
 
I had a resection six years ago . The day after the surgery , they tried to get me up and walking. It took me another day before I was walking. I walked at least twice a day after that. Two and a half weeks after the surgery, they released me. That was on April 22nd. It was July before I could go back to work.. It took me a while before I could get back to normal activity
 
Clairegard1979 said:
Hey,
I had an illecocal resection 10 weeks ago. I'm afraid the recovery is long! You will feel tired for a long time and feel like you have no energy. I had pain from the wound for about two weeks. I still get the odd twinge now, not bad tho. Also you will get a lot of wind pain so definitely walk as much and quickly as possible to help with this. I was allowed to drive after 4 weeks, it depends when your wound is comfortable enough to not hurt if you have to stop suddenly. I had 7 weeks off work but I felt as though I could have gone back after about 5 weeks. I am still doing part time hours as still find I get tired. Also your bowels will be all over the place while you recover. I have been told this can take 6-12 months to settle back down (I think this is worst case scenario) I have recently started taking medication for to help with this.
Sorry it all doesn't sound good but I would rather have known before my op so I was prepared! Like you I have been told the improvement of life outweighs the pain surgery and recovery so I'm hoping this is the case!
Good luck x
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Thanks for the reply Clairegard, I've definitely been hearing a lot about walking asap after surgery so I will definitely do that. As for the tiredness-that sucks as I start uni 10 days after the surgery and don't know how much I will have to miss and if I'll fall behind. I've told my bosses I can return to work after 2 weeks.. It's only 3 hours at a time and not that strenuous but am I being too optimistic?! I have always liked and believed in being optimistic but obviously there's a point where you have to be realistic. What do you mean about bowels being all over the place? Is it in a similar way to how the crohns was making it anyway? Thanks for your reply :)
 
ronroush7 said:
I had a resection six years ago . The day after the surgery , they tried to get me up and walking. It took me another day before I was walking. I walked at least twice a day after that. Two and a half weeks after the surgery, they released me. That was on April 22nd. It was July before I could go back to work.. It took me a while before I could get back to normal activity
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Thanks for the reply. How come it took so long for you to get released? My surgeon said it would be 3-7 days in hospital? What was keeping you from work exactly? (ie pain/bowel movements/fatigue?)
 
I had the same surgery. I had 5 days in hospital - went in Monday morning, left Friday evening. I spent the next week lazing around at home; went for a few walks but you don't realise just how weak and tired you are until you do. Then the following week I started doing some work at home, dared to drive my car, and decided I'd had enough and went back to work on the Thursday (so 2 1/2 weeks after surgery). I was still a bit sluggish moving around, and would get the odd stab of pain, but mostly it was okay. But then I was only sitting in front of a computer; I couldn't have done it if I'd needed to be on my feet all day.

I live on my own, but supermarkets deliver here now, so that wasn't a big issue. Make sure you buy food beforehand so you have something to eat when you get out of hospital.

I found I was still in quite a bit of pain that first weekend at home, but then it eased, and by the Wednesday I was down to just taking a couple of paracetomol in the morning and not needing anything else. The bowels did take about 2 weeks to return to any kind of normality, plus with the air they put into you you'll look pregnant for that long.:D 6 weeks after surgery I was feeling great, gaining the weight back rapidly, and started going cycling again. That was a good time.
 
At the end of March, I went to ER with a case of pancreatitis. I had an allergic reaction to something In the TPN tbey had me on. I am not sure how but I think that factored into the timing somehow . Also after the surgery it took a while before my first bowel movement.
 
chemri said:
Thanks for the reply Clairegard, I've definitely been hearing a lot about walking asap after surgery so I will definitely do that. As for the tiredness-that sucks as I start uni 10 days after the surgery and don't know how much I will have to miss and if I'll fall behind. I've told my bosses I can return to work after 2 weeks.. It's only 3 hours at a time and not that strenuous but am I being too optimistic?! I have always liked and believed in being optimistic but obviously there's a point where you have to be realistic. What do you mean about bowels being all over the place? Is it in a similar way to how the crohns was making it anyway? Thanks for your reply :)
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Two weeks may be a bit optimistic but if you are doing short hours it may be achievable, just see how it goes and don't put too much pressure on yourself! I was expecting to feel great really quickly and started to get quite downhearted when that didn't happen. Plus you may be in hospital for a good while, I was in for 5 days from op then back in for 2 days 2 weeks after op due to a fluid build up.
About the bowels, yeah expect diarrhea/constipation and it can change on a daily basis. Although again I think this can be different for different people, seems to take the bowel a long time to recover from being messed about with, it's a major operation.
 
Clairegard1979 said:
Two weeks may be a bit optimistic but if you are doing short hours it may be achievable, just see how it goes and don't put too much pressure on yourself! I was expecting to feel great really quickly and started to get quite downhearted when that didn't happen. Plus you may be in hospital for a good while, I was in for 5 days from op then back in for 2 days 2 weeks after op due to a fluid build up.
About the bowels, yeah expect diarrhea/constipation and it can change on a daily basis. Although again I think this can be different for different people, seems to take the bowel a long time to recover from being messed about with, it's a major operation.
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Yes,it seems like my wife told me on more than one occasion that I didn't realize how serious an operation it was. .I think each person is different.
 
ronroush7 said:
Yes,it seems like my wife told me on more than one occasion that I didn't realize how serious an operation it was. .I think each person is different.
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I was in complete denial. When the doctor told me I'd need surgery and that it would be laparscopic I actually thought it would mean an overnight stay only.:eek: Then I saw the surgeon and he said 5 days. I told my boss that I'd need to miss a week; I don't think she believed me and told me to take as long as I needed. When I had the pre-op assessment that's when the nurse told me I'd need 6 weeks off work and wouldn't be able to drive for a month.:ywow:

Suddenly I was questioning whether I really wanted to do this thing that would have such a big impact on my life. But totally worth it.
 
I feel like the colorectal surgeon may be being too optimistic. He told me I would only have to have the ileostomy for 2 months. From what i read here the average is about 6 months before reversal. Maybe he didn't want to scare me away!
 
Hi Eridon, maybe that's a point, as most people would want to have one for the shortest time possible. I personally think that if you have a reversal 2 mths later, you will have no sooner got over one surgery then you will be back at square one, with out much of a breather in between.
The only thing is that it gets it all out of the way quickly and your done. I do believe that 6mths in between is a better option as you will have had more time to recover and repair internally. Just my opinion tho, I'm not a doctor and I think the desicion is up to you and your doctor of course.. I am just going off my experience with this, my ileostmy reversal was done after 11mths, and I think it would have been ok from the 6mths mark to have had it done. It was just a case of getting the surgery date from the surgeon, n he was in no rush lol.
I would say ask as much as possible as to how you are likely to be physically after the said 2 mths and go from there.
Sending best wishes, support n hugs 💖
 
Hi Eridon. One thing that we can say for certain about this disease is that nothing is certain. Everybody reacts differently and other people's experiences can only be a very general guide. As you are having laproscopic surgery, your recovery time might be shorter than those who had open surgery and if you are young and otherwise fit, this might be to your advantage, too.

On that note, make sure that you are as fit and rested as you can be before the surgery - it all helps. :hug:
 
Very true Susan, I was forgetting it was laproscopic, mine was open so recovery may well be quicker. I apologize for my mistake there Eridon, best wishes 💕
 
Thanks Mandy and Susan! For me, I just want to do whatever is best for my body. I understands even if that means keeping the ileostomy bag for longer while my colon heals. I have been trying to exercise more to prepare myself for surgery. Especially lifting weights and doing abdominal exercises(I want that scalpel blade to bend when it cuts into my abs!) I've got to shake this nasal congestion that has been ongoing for 3 weeks. I don't want to go on antibiotics but I know I shouldn't go into surgery with a possible nasal infection.
 
You are most welcome. Hope the nasal infection clears up quickly.. I love the scalpel bending ☺. I am sure you only want the best for your body n health, and its good that you are prepared to have the ileostomy as long as is needed. I actually got quite attached to my stoma . It was my saviour. I shed a tear when she went coz she had made my life worth living again. I say she as I called it Hetty . I gave it a name in the interest of acceptance of it. I wish you all the best, and hope that all goes smoothly for you. I💕💖
 
Thanks everyone that's all great feedback. I guess ultimately (and unfortunately) I can't rely on anyone else's experience and will have to figure it out for myself.

It's a big weight off my chest now that my bosses have gotten back to me and have been completely understanding and supportive!

Surgery in under 3 weeks now.. I'm nervous but the symptoms are so bad at this point I also can't wait!
 
That's great news about your bosses being understanding. My resection will be in about 4 weeks. The past 2 days were horrible and I was scared I was getting an obstruction. I almost which I could move the surgery date up.
 
Hi everyone. I was into see my surgeon today and was told that the fistula I have would need surgery to fix. He said even if humira or remicade were to work to close it, it would just come back since the part the fistula is coming from is so full of scare tissue and infection. I've had crohns for 17 years and never had surgery yet. I have a reconstruction on the 18th and the surgeon is going to be removing the some of the right part of my colon where the small instetine joins. He thinks that he should be able to hook it all back up in the same surgery. He also is going to clean the abscess and infection I have where the fistula exits out next to my belly button. I'm kinda worried because he said there is a chance I may require a temp bag if the ends can't be reattached and. A 7 to 10 % chance I'll have a bag for the rest of my life. I'm just wondering if anyone else has had reconstruction surgery and had good luck with it?
 
matt82 said:
Hi everyone. I was into see my surgeon today and was told that the fistula I have would need surgery to fix. He said even if humira or remicade were to work to close it, it would just come back since the part the fistula is coming from is so full of scare tissue and infection. I've had crohns for 17 years and never had surgery yet. I have a reconstruction on the 18th and the surgeon is going to be removing the some of the right part of my colon where the small instetine joins. He thinks that he should be able to hook it all back up in the same surgery. He also is going to clean the abscess and infection I have where the fistula exits out next to my belly button. I'm kinda worried because he said there is a chance I may require a temp bag if the ends can't be reattached and. A 7 to 10 % chance I'll have a bag for the rest of my life. I'm just wondering if anyone else has had reconstruction surgery and had good luck with it?
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Matt , wishing you the best.
 
Hmmm. Re section I think. I'm having some of the right part of my colon removed. And abit of the small intestine where the illiume is. My surgeon said he is hooking everything back up the same day. He said there is a 93 to 90 % chance that this can be done and a 7 to 10 % chance that it can't and I'll either need a bag for the rest of my life or a temp bag till stuff can heal. I'm keeping my fingers crossed and praying for the first option. My surgeon is suppose to one of the best at this type of surgery and he seems pretty confident in being able to hook everything up all in one go. It just seems to good to be true to me since he said if all goes well I'll be up and moving the day after and be feeling good and up and on my feet in 6 to 8 weeks. I guess I'm just fairly worries that's all. Just really hope I'm making the right choice to have surgery. But I don't think I have any other option. I just wanted to know if there was any success stories from people with surgery and if it made there quality of life better, and how fast did there symptoms come back
 
They removed six centimeters of my stomach. I was up and moving two days later. After that, they had me walking twice a day after that. I was operated on April 6 of 2010. April 22nd, I was released. By June, I was back at work. Don't overeat and stay close to your dietary restrictions. Let us know how you are doing
 
ronroush7 said:
They removed six centimeters of my stomach. I was up and moving two days later. After that, they had me walking twice a day after that. I was operated on April 6 of 2010. April 22nd, I was released. By June, I was back at work. Don't overeat and stay close to your dietary restrictions. Let us know how you are doing
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Wow. So that sounds about what I'm being told too. And I'll let you know how everything goes. And thanks for the reply
 
Hi Matt . I had a resection after beung extremely poorly for a long time. Straight after my op i felt blooming great. Tender at surgery site but other than that fab ,all the horrible stomach pains were gone. I had a temp ileostomy for 11mths. I was up n out of bed the 3rd day after op. Mainly bcoz i was so ill going in to op. Spent 10days in. Then home. I was off work for 3mths as i had been so ill b4 it. On my reversal i was in a week n back at work in 2mths. Mainly bcoz my job involed heavy lifting. I have looked never back it was a life saver for me. I dont know how much longer i would have had left for this world without it. Best wishes n hope all goes well for you too 💕
 
mandyk said:
Hi Matt . I had a resection after beung extremely poorly for a long time. Straight after my op i felt blooming great. Tender at surgery site but other than that fab ,all the horrible stomach pains were gone. I had a temp ileostomy for 11mths. I was up n out of bed the 3rd day after op. Mainly bcoz i was so ill going in to op. Spent 10days in. Then home. I was off work for 3mths as i had been so ill b4 it. On my reversal i was in a week n back at work in 2mths. Mainly bcoz my job involed heavy lifting. I have looked never back it was a life saver for me. I dont know how much longer i would have had left for this world without it. Best wishes n hope all goes well for you too 💕
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Thanks for the reply. And it's so great to hear good things. My surgeon thinks that I'm probably going to wish I did this year's ago. They have always wanted to operate for 17 years now. And I've been close to having it done but I always focused on the negative out comes of surgery instead of the positives. My disease has been manageable I guess by my standards but it rarely ever let a day go by where I forgot I has it. I guess after 17 years I got use to the pain and other symptoms and just dealt with it and got use to it. I'm told that if everything goes good I should have no pain other then the surgery pain and my symptoms should be much better if any and may even be able to get off prednisone which I've been on and off for 17 years.
 
matt82 said:
Thanks for the reply. And it's so great to hear good things. My surgeon thinks that I'm probably going to wish I did this year's ago. They have always wanted to operate for 17 years now. And I've been close to having it done but I always focused on the negative out comes of surgery instead of the positives. My disease has been manageable I guess by my standards but it rarely ever let a day go by where I forgot I has it. I guess after 17 years I got use to the pain and other symptoms and just dealt with it and got use to it. I'm told that if everything goes good I should have no pain other then the surgery pain and my symptoms should be much better if any and may even be able to get off prednisone which I've been on and off for 17 years.
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After my resection, my surgeon told me that my intestines had been like that for years.
 
Hi ye Matt i struggled with the pain for years,not as many as you mind. Oh honestly the relief after the op was amazing...the surgical pain was no way painful in comparision. Iv been on no meds for my crohns since the op.
I still have joint pain but that is nothing compared the stomach pains.
My life is 98% better than b4, i had thought i wish id had it sooner as your surgeon says.I do still have issues re urgency for the loo now n then. But pretty much normal most of the time. I hope you have the same success as i did. Best wishes and please keep us updated on how you are. 💕
 
I'm trying to get my resection surgery date pushed up. It scheduled for March 4th but I don't think I can wait that long. I'm at my physical and emotional limit of dealing with the pain and fatigue. I wake up feeling pretty decent but as the day progresses I feel worse and worse as food moves down to the stricture in my colon, then it's pain and cramping and I can't eat. I've already lost 2 pounds in 5 days (at 5ft 7in I'm only 105 pounds). I can't keep headed in this trajectory till March 4th.
 
Eridon2002 said:
I'm trying to get my resection surgery date pushed up. It scheduled for March 4th but I don't think I can wait that long. I'm at my physical and emotional limit of dealing with the pain and fatigue. I wake up feeling pretty decent but as the day progresses I feel worse and worse as food moves down to the stricture in my colon, then it's pain and cramping and I can't eat. I've already lost 2 pounds in 5 days (at 5ft 7in I'm only 105 pounds). I can't keep headed in this trajectory till March 4th.
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I hope it works out.
 
Good luck with your surgery. I had mine 12 weeks ago. Recovery from the actual surgery was about 5/6 weeks. Although I'm still waiting to get the benefit of the surgery as I'm still having symptoms. Been told this can take a long time for some people. Good luck!
 
mandyk said:
Hi ye Matt i struggled with the pain for years,not as many as you mind. Oh honestly the relief after the op was amazing...the surgical pain was no way painful in comparision. Iv been on no meds for my crohns since the op.
I still have joint pain but that is nothing compared the stomach pains.
My life is 98% better than b4, i had thought i wish id had it sooner as your surgeon says.I do still have issues re urgency for the loo now n then. But pretty much normal most of the time. I hope you have the same success as i did. Best wishes and please keep us updated on how you are. 💕
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I could definitely handle being 90 % better then I was before. I would settle for 50 %. I'm actually starting to look forward to surgery now. Still not sure what I'm going to do if it all goes according to plan and I actually feel normal with no pain. It's been at least 17 years since I've had no meds and probably longer then that with out some kind of pain everyday.
 
Clairegard1979 said:
Good luck with your surgery. I had mine 12 weeks ago. Recovery from the actual surgery was about 5/6 weeks. Although I'm still waiting to get the benefit of the surgery as I'm still having symptoms. Been told this can take a long time for some people. Good luck!
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Thanks. And I'm actually ok with the symptoms of Crohn's that I had before this fistula started leaking. All I want is the damn thing to stop leaking out the skin in my stomach. If I can at least get that only out of this I'll be so happy. The pain and feeling like crap most days I can live with, been doing it for so long now I guess I've just adapted to it. But the leaking I can't. Anything other benefit from the surgery other then the fistula bring fixed is going to be priceless to me.
 
Eridon2002 said:
I'm trying to get my resection surgery date pushed up. It scheduled for March 4th but I don't think I can wait that long. I'm at my physical and emotional limit of dealing with the pain and fatigue. I wake up feeling pretty decent but as the day progresses I feel worse and worse as food moves down to the stricture in my colon, then it's pain and cramping and I can't eat. I've already lost 2 pounds in 5 days (at 5ft 7in I'm only 105 pounds). I can't keep headed in this trajectory till March 4th.
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I was in kinda the same boat as you with my fistula in the beginning. I had an appointment to get the abscess drained in my abdominal area. But was told I had to wait two weeks. I knew there was no way I was going to be able to wait. So after a week the pain was unbelievable and the abscess was the size of a golf ball. I got hold of my GI and he said the only way they would move my appointment up would be for me to come into emerg and they would admit me them it would be done the next day. It worked for me but that is one option if you are unable to wait. I know how much it sucks waiting. I've been doing this since October waiting for some way to fix this. Hope it all works out for you
 
One thing I just can't get my head wrapped around is that they say the can remove part of my right colon and possible abit of the small intestine and hook it all back up the same time. And they I'll be able to have water that night and eating and drinking the next day plus being up and walking around. Just seems way to good to be true.
 
Hi Matt I had the exact same surgery 1 week ago. They did the procedure laparoscopically and did sew the ends straight back together without needing a stoma. It did feel very strange but the next morning I was offered breakfast (less than 24 hours after surgery) I even had to triple check with various people that I was definitely allowed to eat as it didn't seem right to me!
 
Plittler said:
Hi Matt I had the exact same surgery 1 week ago. They did the procedure laparoscopically and did sew the ends straight back together without needing a stoma. It did feel very strange but the next morning I was offered breakfast (less than 24 hours after surgery) I even had to triple check with various people that I was definitely allowed to eat as it didn't seem right to me!
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and everything is going ok Stil?
 
Ye as plitter said.i was eating toast at supper after my afternoon surgery . Then eat breakfast lunch dinner the next day and ever since. Some surgeons do a liquid /soft food for a day or so but mine didnt. 💕
 
Wow.I'm pretty sure I'm going to stick to a liquid soft food diet for a day. Just cause but both your stories do sound very promising and thank you for sharing. All these stories have made me feel so much better about deciding to have surge
 
Glad to be of help .. Hope all goes well for you Matt. You now see its not all horror stories. ☺Things can go well.Keep us updated please. Best of luck . 💕:hug:
 
So I was nervous about surgery before, but was getting amped up for it. Now I've just been informed my insurance might not cover it... Getting nervous now because I want these symptoms to go away! And that the $23,000 surgery due in one week might not even be covered D: SO FRUSTRATING!!!
 
chemri said:
So I was nervous about surgery before, but was getting amped up for it. Now I've just been informed my insurance might not cover it... Getting nervous now because I want these symptoms to go away! And that the $23,000 surgery due in one week might not even be covered D: SO FRUSTRATING!!!
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This is one thing as a Canadian that I'm very thankful for is the health care system. I couldn't imagine having to pay for the surgery and not being able to get it done cause I can't afford it. I'm so sad to here this. Praying for you and hopefully something works out
 
Well.. I suppose I am lucky in a way because the New Zealand heathcare system covers it.. I should have been more specific, I thought I was going to get it done next Friday privately but if the insurance doesn't approve it, I will have to go on a waitlist for the public health system and that could take ages! I really feel like I need it now so for all that build up then to be told it may not happen now is really frustrating :(
 
FWIW having had multiple surgeries (hemicolectomy and revisions), the surgery won't be a walk in the park...but in my case, it has been a breeze compared to enduring the suffering that got me there in the first place.

I'd echo the advise to grit your teeth and move as much as possible, it'll help in the long term and there's no point in lying around.

The most annoying bit is that you usually get hooked up to a pain relief machine...where was that when it was needed ! In my experience (and it may be different for others) if you have lived with the pain of bowel obstruction for any length of time then the pain of surgery is nothing - hoping not to be proved wrong soon.
 
I'm very familiar with the pain from an obstructed bowel. And yes I agree it's a pain like no other. It's good to hear that the surgery pain is a breeze compared to that
 
Next week at this time I'll be three days post op. How I wish I could fast forward to that. Starting to get a bit nervous again about all of this lol. I hate waiting and hate not knowing what is going to all happen
 
Understandable Matt. All i can say is try not to worry to much, think of how much better you will feel instead. I mayb a bit strange but i didnt worry about my surgeries, my 1st didnt have much time too, but just want the pain gone so much that i just didnt care. The second had time to think with no pain. I still didnt worry, im a believer n all will be well. Lets do this n come out the other side and march on with life. Dont know if this helps or not .. but its given u a few seconds not worrying while u read it ☺. :hug:
 
mandyk said:
Understandable Matt. All i can say is try not to worry to much, think of how much better you will feel instead. I mayb a bit strange but i didnt worry about my surgeries, my 1st didnt have much time too, but just want the pain gone so much that i just didnt care. The second had time to think with no pain. I still didnt worry, im a believer n all will be well. Lets do this n come out the other side and march on with life. Dont know if this helps or not .. but its given u a few seconds not worrying while u read it ☺. :hug:
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Thanks and yes it does help reading it, put a smile on face at a time when I'm dealing with so much more then just my crohns disease and surgery and thanks for the support. I'll probably be posting while in the hospital since I won't have much else to do for a few days.
 
Glad it helped a little Matt.
Ye you mostly likely will be posting as you say not alot else to do in hospital. At least you will have us crazy guys to keep you company 😆😆 :hug:
 
chemri said:
So I was nervous about surgery before, but was getting amped up for it. Now I've just been informed my insurance might not cover it... Getting nervous now because I want these symptoms to go away! And that the $23,000 surgery due in one week might not even be covered D: SO FRUSTRATING!!!
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What is their reason for not covering it? Why else have private insurance? Can you appeal?

Mine paid for my resection 18 months ago and I was quite impressed that they got it sorted within a week (that's all the notice I had) and did most of the running around after specialist referrals etc.

I'm crossing all my fingers and toes that they'll cover it and it'll get done this week!
 
matt82 said:
Next week at this time I'll be three days post op. How I wish I could fast forward to that. Starting to get a bit nervous again about all of this lol. I hate waiting and hate not knowing what is going to all happen
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Is your surgery on Friday too? I also agree the bowel obstruction pain is so bad that whenever I am injured or sore elsewhere it's really nothing!!
 
Layla said:
What is their reason for not covering it? Why else have private insurance? Can you appeal?

Mine paid for my resection 18 months ago and I was quite impressed that they got it sorted within a week (that's all the notice I had) and did most of the running around after specialist referrals etc.

I'm crossing all my fingers and toes that they'll cover it and it'll get done this week!
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Hi Layla, I have appealed it and awaiting their decision now!

They (southern cross) initially denied my claim for prior approval because I had had abdominal pain before my cover started (nothing was diagnosed). I think that is so stupid because it could have been anything I mean there are so many organs in your abdomen but because it was there they said it was a pre existing condition..

So yes I said pretty much that is stupid I want to appeal that so they made me get my doctor to fill out a form that asked when my pain started according to their records! SO I have no idea what she wrote, I am just HOPING that she wrote that they started last year because that would make the pre approval go through. So she sent that through for me today and I will be calling the insurance company all day tomorrow asking them to get it sorted in quick time!!

I am crossing everything I can cross that it goes through...
 
I was lucky with health insurance as my employer paid extra for an option that ignored medical history. I was already half way through the long diagnosis process when my insurance cover started, so I ignored at as I didn't think it would cover me. Then I found out when I needed surgery that it did and was able to have the operation privately.

Good luck. Sounds like NZ is much the same as the UK.
 
chemri said:
Hi Layla, I have appealed it and awaiting their decision now!

They (southern cross) initially denied my claim for prior approval because I had had abdominal pain before my cover started (nothing was diagnosed). I think that is so stupid because it could have been anything I mean there are so many organs in your abdomen but because it was there they said it was a pre existing condition..

So yes I said pretty much that is stupid I want to appeal that so they made me get my doctor to fill out a form that asked when my pain started according to their records! SO I have no idea what she wrote, I am just HOPING that she wrote that they started last year because that would make the pre approval go through. So she sent that through for me today and I will be calling the insurance company all day tomorrow asking them to get it sorted in quick time!!

I am crossing everything I can cross that it goes through...
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Crossing all possible things that can be crossed for you. Hope it all works out in your favour . Best wishes💕
 
chemri said:
Is your surgery on Friday too? I also agree the bowel obstruction pain is so bad that whenever I am injured or sore elsewhere it's really nothing!!
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My pain from the resection was so bad that it took an extra day before I was up and moving.
 
Sorry for the bit of a hijack here, but I just got confirmation that my stoma reversal surgery has been booked in for the 12th March.

Whilst I'm pleased that I'm being reconnected, I'm also really nervous.

I had to be opened up on my initial surgery and as such suffered an annoyingly long period of Ileus. I spent a month in hospital after my operation, waiting for it to resolve.

I'm told that the reversal operation will be much simpler with laparoscopic treatment and to expect to be in hospital for a maximum of a week?

Will the chances of getting Ileus back as bad be just as high for this op, or as my insides aren't all being messed with as much, will it be less.

I really hope so :(

Edit: Oh, forgot to mention the initial surgery was four months ago. I had 7 inches of small bowel removed and I have all my large Colon and rectum in tact.
 
Sorry for double post, but I keep getting server error messages, when trying to edit my post. Here's what I was trying to put, below.

Edit: Oh, forgot to mention the initial surgery was four months ago. I had 7 inches of small bowel removed (Terminal Ileum) and I have all my large Colon and rectum in tact.
 
chemri said:
Is your surgery on Friday too? I also agree the bowel obstruction pain is so bad that whenever I am injured or sore elsewhere it's really nothing!!
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Mine is on Thursday. It's open bowel surgery because the surgeon has to clean out the left over abscess and fistula tract. I'm told the only difference with this compared to the small cuts they do is recovery time.
 
It sounds like a number of us have surgery this week! My surgeon should be able to do mine laproscopically. I think he threw the *should be able* in there since they never know what they'll find once you're opened up. I have to start the Miralax prep today to get cleaned out. Ugh, this is the third prep I've had to do in 4 months. I also have to take Neomycin and Metronidazole.
 
Eridon2002 said:
It sounds like a number of us have surgery this week! My surgeon should be able to do mine laproscopically. I think he threw the *should be able* in there since they never know what they'll find once you're opened up. I have to start the Miralax prep today to get cleaned out. Ugh, this is the third prep I've had to do in 4 months. I also have to take Neomycin and Metronidazole.
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Yes I m not looking forward to the prep either. I start tomorrow. Light breakfast then clear fluids I take a total of 4 dulcox pills and 2 pacs of done Pico stuff. But im taking part in some kinda ERAS thing. Where I'm to drink 400 ml of a hi carbohydrate drink 2 to 3 hours before my surgery. I guess it helps with recovery and energy after surgery. Plus have a bunch of exercises to do also.
 
I hope the high carb drink helps(and doesn't taste nasty)! Hmm, exercises, I know I wouldn't have the energy for that today. I have to keep the tv off because I don't want to see any food commercials. Because my strictures are so bad I decided to do liquid diet most of yesterday too.
I've agreed to be in a study for a new wound irrigation device trial. I guess the old school method is with a syringe and this new device will continuously bathe the wound in saline/antibiotics while they are performing surgery.
 
Eridon2002 said:
I hope the high carb drink helps(and doesn't taste nasty)! Hmm, exercises, I know I wouldn't have the energy for that today. I have to keep the tv off because I don't want to see any food commercials. Because my strictures are so bad I decided to do liquid diet most of yesterday too.
I've agreed to be in a study for a new wound irrigation device trial. I guess the old school method is with a syringe and this new device will continuously bathe the wound in saline/antibiotics while they are performing surgery.
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. My case is unusual I think. As far as my crohns symptoms at this time I don't have any. I did have pain in the lower right side for a long time ( like a year and a half) but no pain, just a lot of gas and I mean a lot of gas. I could almost pass gas for 30 seconds straight lol then the pain would go away for a bit till the next time I had to let it rip lol. I worked full time till October when the pain got to much and there was a abscess that had actually started being visable just right to my belly button. Had it drained and that's when it was found that a fistula had been coming from my colon. I had noticed probably for about 3 or 4 years now my bowel movements were formed but tall and narrow looking. ( not sure if that makes sense lol). But I still to this day have ok energy and only going to bathroom 3 times a day and no D. My only problem is the fistula keeps leaking and causes infection so I can't eat a lot cause the stuff I eat comes out the hole in the skin. But by what I've been told this part of my bowels the terminal illium and that part of the colon have been bad for 17 years and show inflammation and scare tissue and I guess it's so narrow that stuff can hardly go through and has to go somewhere. Just weird how I'm not sicker then I am. If it wasn't for the leaking I would be up and going and working. Basically not having any problems.
 
I had the carbohydrate drink before my surgery a couple of weeks ago and I'm pleased to say it was quite nice!
 
mandyk said:
Hi i had that pre my second surgery.. its not to bad is it, as you say quite nice.💕
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They want me to just drink apple juice 800 ml before midnight then 400 ml 2 to 3 hours before surgery. Guess it's suppose to really help with energy after surgery. Have to wait and see
 
Just reading through this thread and hope that all went well with Eridon2002's surgery today (I think it was today). Hope you'll post whenever you're able!
 
So I started my bowel prep last night. Started with taking 2 dulcotax tablets at 8 pm. Now I'm suppose to take a pac of Pico salaix at 3pm and two more tablets at 5 pm and another pac of the Pico stuff at 7pm. But I woke up at 3 am having to go up the bathroom which I figured is normal cause I started the prep. I've gone 6 times in 6 hours but I've now noticed I've been feeling cold and my face feels hot. So I took my temp and it's 102.3 :( or 39.0. I'm suppose to have surgery tomorrow at 8 and I'm afraid this isnt going to happen now. I have noticed that the fistula is draining more watery coloured stuff. I just hope it's not the infection causing my temp to rise. This stuff always happens to me. When it rain it sure does poor in my life :(
 
Matt82, I am so sorry about your fever! Have you called your doctor yet? Saying a prayer for you right now.
 
No haven't called yet. I took some tylenol and it has came back down to normal. Had a sleep and big sweat. Now I feel ok. Not sure what the problem. Going to call this afternoon. Was suppose to anyways to confirm that the surgery was tomorrow
 
matt82 said:
So I started my bowel prep last night. Started with taking 2 dulcotax tablets at 8 pm. Now I'm suppose to take a pac of Pico salaix at 3pm and two more tablets at 5 pm and another pac of the Pico stuff at 7pm. But I woke up at 3 am having to go up the bathroom which I figured is normal cause I started the prep. I've gone 6 times in 6 hours but I've now noticed I've been feeling cold and my face feels hot. So I took my temp and it's 102.3 :( or 39.0. I'm suppose to have surgery tomorrow at 8 and I'm afraid this isnt going to happen now. I have noticed that the fistula is draining more watery coloured stuff. I just hope it's not the infection causing my temp to rise. This stuff always happens to me. When it rain it sure does poor in my life :(
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Aw no that's not good news! Fingers crossed and I hope all goes well tomorrow if they still go ahead.
 
Hope the fever settles down quickly, I wonder if it may be caused by the prep and or the results of it. Crossing fingers for you that things go to plan. Hugs 💕
Mandy
 
Matt-I had the Miralax prep which made me cold but with a very hot, flushed face. I didn't take my temperature tho. I hope your surgery goes well. Just make sure you manage your pain post-op.
Surgery went well. No "surprises" when they opened me up. I was scared because the surgeon prep-op was telling me all the possible outcome(like taking out more colon). The pain is nothing compared to an obstructed bowl pain. Although I do have an epidural and a PCA with dilaudid. They had to turn down the epidural because my blood pressure is low(78/50). Once they turned it down I could feel the pain creeping up so they gave me the dilaudid. They haven't gotten me up and walking yet. I have the calf squeezers to help with circulation. No food yet either. I haven't eaten since Sunday morning! I think they are going to give me liquid diet later today. I asked to talk with a nutritionist because I want to know what is in the hospital food because I have some additives on my don't-eat-can-cause-flare list. I am kinda surprised at how much energy I have. I think that is because I don't have the Crohn's pain.
 
Eridon2002 said:
Matt-I had the Miralax prep which made me cold but with a very hot, flushed face. I didn't take my temperature tho. I hope your surgery goes well. Just make sure you manage your pain post-op.
Surgery went well. No "surprises" when they opened me up. I was scared because the surgeon prep-op was telling me all the possible outcome(like taking out more colon). The pain is nothing compared to an obstructed bowl pain. Although I do have an epidural and a PCA with dilaudid. They had to turn down the epidural because my blood pressure is low(78/50). Once they turned it down I could feel the pain creeping up so they gave me the dilaudid. They haven't gotten me up and walking yet. I have the calf squeezers to help with circulation. No food yet either. I haven't eaten since Sunday morning! I think they are going to give me liquid diet later today. I asked to talk with a nutritionist because I want to know what is in the hospital food because I have some additives on my don't-eat-can-cause-flare list. I am kinda surprised at how much energy I have. I think that is because I don't have the Crohn's pain.
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I'm glad to hear everything went good for you. And yes I've had dilodied before it's good stuff for pain. I hope they still do mine tomorrow. My temp has stayed down now. And I'm hoping for a good out come tomorrow too with no surprises.
 
Hi Eridon so glad that you are feeling ok after the op. I felt great re pain myself after mine, the surgery pain was a doodle compared to crohn's pain. I
Take it easy and rest and I hope you continue to get better, love n hugs 💕Mandy
 
And it has been denied...

So now I have to go on a waitlist for the public service which will take about 4/5 months.

I am so so sad and frustrated!

How is this a pre existing condition when it was never diagnosed...
 
I'm sorry to hear that Chemri. I was frustrated just trying to get mine moved up a few weeks. Stupid insurance companies.
 

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