I'm 26 and I was diagnosed at 22 right before I started law school. This is my first post, but I am scheduled to have my first small bowel resection in a few weeks, and I'm a little freaked out. My surgeon said that having an ileostomy was a slight possibility, and I don't know how I will cope with having one. I'm worried that it will freak my boyfriend out too much and that he will leave, even though he has been nothing but supportive so far. I'm afraid that I won't be able to return to work or maintain my health insurance. I'm mostly just wondering how people deal with having an ileostomy and how common having one after a small bowel resection is? Any advice for pre-surgery and post-surgery would be very much appreciated too!
First Bowel Resection
- Thread starter Kate26
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Hi! I've gone through all of that in the past four months. How much are they taking out? I've had most of my colon removed and had a bag for three months. I was afraid my boyfriend would be disgusted but it was dealt with well. I would wear bigger shirts and just remember that it was temporary. 
I had my bag removed a couple weeks ago and I'm doing just fine other than an infection and hole where I had the bag. It's not as bad as you think it will be. They will make sure that you aren't in any pain! It's scary, but you are still in your twenties, like me, so you will heal very quickly. I can't think of any prep for it other than packing comfy clothes, lip balm, hair ties, and some entertainment. They will probably get you walking the next day or day after. If ileostomy is only a slight possibility then I wouldn't worry much because most people that have a bag knew that it would be the outcome. I also heard some nurses say that chicago was top in state for inflammatory disease recovery and such..Not sure if it's true..You should be in good hands though.
I had my bag removed a couple weeks ago and I'm doing just fine other than an infection and hole where I had the bag. It's not as bad as you think it will be. They will make sure that you aren't in any pain! It's scary, but you are still in your twenties, like me, so you will heal very quickly. I can't think of any prep for it other than packing comfy clothes, lip balm, hair ties, and some entertainment. They will probably get you walking the next day or day after. If ileostomy is only a slight possibility then I wouldn't worry much because most people that have a bag knew that it would be the outcome. I also heard some nurses say that chicago was top in state for inflammatory disease recovery and such..Not sure if it's true..You should be in good hands though.Crohn's 35
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Hi Kate, I have had two resections, terminal ileum with the first surgery being exploratory to take out appendix. I have not had an ileostomy. It does depend on where the affected is and how much. Presurgery, not much you can do, but post take it slow and make sure you are ready to go home. AS for your boyfriend I know this sounds harsh (been there) if your boyfriend leaves, you might be better off, because if someone loves you, they are there through thick and thin and I know have my hero. I am almost double your age but I was dx when I was 32.
Keep us posted. Most first surgeries are laproscopic and ask your surgeon if an epidural for pain control is possible. Laproscopically done heals faster and less invasive.
:hang:
Keep us posted. Most first surgeries are laproscopic and ask your surgeon if an epidural for pain control is possible. Laproscopically done heals faster and less invasive.
:hang:
Hi Kate try not to fret I had an ileocecal resection (without needing a bag)in 2010 and had all the same concerned as you. I had 1ft damaged bowel at term al ileum rest of the bowel seemed good my surgeon said chances of needing a bag were very slim (4%) and would really only be required if there was a leak at the join post op or if the bowel needed time to heal and at that it would be temporary. He, although extremely lovely was not sympathetic when I said I didn't want a bag he just replied who does if your in a position to need one you'll not complain. If ur bf has been supportive so far (as you would expect) he more than likely will be supportive if you need a bag. I had the same concern about my husband but he just joked and said if I needed a bag I'll prob request a designer one!! Good luck it's a very confusing time but I wouldn't look back now I've had a great outcome with surgery and if you want any advice just ask
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Hi Kate,
I've had my surgery last week - a laparoscopic ileocolic resection - and am now recovering well.
I was also warned before my operation that there was a small possibility that I might require a ileostomy - as they often don't know what state your bowel is truly in, until they are able to look at it though the camera(!). Saying that, the likelihood of needing a bag was said to be very small.
I would guess that the Surgeon is in fact the best person to discuss your concerns with - but I can truly sympathise with you. The run-up to the operation is a little disconcerting, but looking at it now from the other side, I really didn't need to worry too much.
With regards,
Tony.
I've had my surgery last week - a laparoscopic ileocolic resection - and am now recovering well.
I was also warned before my operation that there was a small possibility that I might require a ileostomy - as they often don't know what state your bowel is truly in, until they are able to look at it though the camera(!). Saying that, the likelihood of needing a bag was said to be very small.
I would guess that the Surgeon is in fact the best person to discuss your concerns with - but I can truly sympathise with you. The run-up to the operation is a little disconcerting, but looking at it now from the other side, I really didn't need to worry too much.
With regards,
Tony.
Hi, Kate
The most important thing I can tell you is to give yourself time to heal and not to rush back to work. I had a small bowel resection in December between semesters (I'm in law school now and working full time). I only had two and a half weeks post-op before I had to start working and attending class again. I regret it. I am having a lot of minor complications that is making everything a little overwhelming.
After my surgery, I was not in any pain. I was actually very happy because of the morphine. I was very tired and very weak for a long time, and I lost a lot of weight. I developed several wound infections and an abscess post-op. The doctors had to re-open my wound and pack it so it could heal from the inside out. I thought it was the end of the world, but it healed in about two weeks.. it wasn't really that bad in hindsight. Just new and scary. I was never in a lot of pain.
I didn't need a bag. My doctor told me there was a small chance I would need one too, but it was unnecessary.
I understand how you feel. I am single, and everytime I start dating someone new, I'm scared that they won't understand or won't want to deal with my misc health problems. But give your boyfriend some credit and understand this is also hard on him because he probably wants to help but doesn't know how. Just work with him and remember that he is scared too
When dealing with friends and family through my surgery, I've found that it was helpful to give them small, specific little tasks to help me so they would feel like they were helping, like bringing me my favorite snacks or movies, but didn't let them see any of the scary stuff or help with things nurses should be doing (like my wound care). It helped keep them from freaking out and freaking me out at the same time.
The most important thing I can tell you is to give yourself time to heal and not to rush back to work. I had a small bowel resection in December between semesters (I'm in law school now and working full time). I only had two and a half weeks post-op before I had to start working and attending class again. I regret it. I am having a lot of minor complications that is making everything a little overwhelming.
After my surgery, I was not in any pain. I was actually very happy because of the morphine. I was very tired and very weak for a long time, and I lost a lot of weight. I developed several wound infections and an abscess post-op. The doctors had to re-open my wound and pack it so it could heal from the inside out. I thought it was the end of the world, but it healed in about two weeks..
it wasn't really that bad in hindsight. Just new and scary. I was never in a lot of pain. I didn't need a bag. My doctor told me there was a small chance I would need one too, but it was unnecessary.
I understand how you feel. I am single, and everytime I start dating someone new, I'm scared that they won't understand or won't want to deal with my misc health problems. But give your boyfriend some credit and understand this is also hard on him because he probably wants to help but doesn't know how. Just work with him and remember that he is scared too
When dealing with friends and family through my surgery, I've found that it was helpful to give them small, specific little tasks to help me so they would feel like they were helping, like bringing me my favorite snacks or movies, but didn't let them see any of the scary stuff or help with things nurses should be doing (like my wound care). It helped keep them from freaking out and freaking me out at the same time.
Hi Kate just wanted to say good look Im 25 and have my 1st resection coming up in the next few weeks as well I am so scared! I 2 have the same concerns about a bag also I am really worried about the possibility of an epidural 4 pain relief afterwards! from experience does anyone have any advice on wether an epidural or morphine is best? I hate the thought of an epidural I spoke to the nurse about this and she said it would be a much better option than morphine tho x
I spoke to the nurse about this and she said it would be a much better option than morphine tho xThe epidural gave me more problems than the surgery I've had 2 before when having babies (lower down) no probs and the one for surgery was higher up, he had difficulty getting it in but eventually did but when I came round it was only the epidural that was causing pain. I don't want to sound like I'm being negative but I could not wait til they removed it and I have a high pain threshold. It was hitting a nerve but once it was out it was fine. The actually surgery site wasn't that painful so in hindsite I didn't need it therefore if I ever need surgery again I'll not have one. That said I am one of the unfortunate few it doesn't work for most peoe think they are great as I did for for having babies. Confusing I know but long story short for me it wasn't necessary as the survey site wasn't that painful.
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Kimmy86;
My epidural was absolutely fine and really does offer superb pain relief. In fact I was a little upset when it came out!
Archie, I know, had an uncomfortable time with the epidural, due to its unfortunate placing in a sensitive spot.
But what exactly are you worried about? IMHO putting the epidural in was no more uncomfortable than having the needle put in the back of my hand(!)
Tony.
My epidural was absolutely fine and really does offer superb pain relief. In fact I was a little upset when it came out!
Archie, I know, had an uncomfortable time with the epidural, due to its unfortunate placing in a sensitive spot.
But what exactly are you worried about? IMHO putting the epidural in was no more uncomfortable than having the needle put in the back of my hand(!)
Tony.
Hi Kate just wanted to say good look Im 25 and have my 1st resection coming up in the next few weeks as well I am so scared! I 2 have the same concerns about a bag also I am really worried about the possibility of an epidural 4 pain relief afterwards! from experience does anyone have any advice on wether an epidural or morphine is best? I hate the thought of an epidural
Hi Kate26 - I am in the middle of my first resection. I had my first surgery in the Fall of 2011 and ended up with a temporary ileostomy because I had been on steroids so long that my tissue was weak. I'm scheduled to have the reversal surgery next week. Just remember, if you do have to have the bag it sounds like it will most likely be temporary and that is something to stay positive about!
As far as your concerns about your bf. I've been there. I'm a little older than you, but my partner of 14 years left me just before my first surgery. While it has been very difficult to face this alone, there is part of me that is thankful to learn in my 30's that they were not 'the one' rather than learning with an illness later in life. I know it sounds like a small comfort, but it sounds like your boyfriend has been supportive and if he continues that support at least you know you have a good one!
As far as your concerns about your bf. I've been there. I'm a little older than you, but my partner of 14 years left me just before my first surgery. While it has been very difficult to face this alone, there is part of me that is thankful to learn in my 30's that they were not 'the one' rather than learning with an illness later in life. I know it sounds like a small comfort, but it sounds like your boyfriend has been supportive and if he continues that support at least you know you have a good one!
Hi Kate, Make sure your doctor gives you a corsett..."compression garment" that you MUST wear for 3 to 4 weeks!!!! This will make your abdominal tissue adhere to the abdomen uniformly. If you don't....well you'll be seeing a plastic surgeon like me. I don't know how to explain it but my abdominal skin is very obviously not uniform and the abdominal muscles seperate causing your tummy to be loose. I'm physically fit and thin all my life and now I am going to have a "tummy tuck" - a needless surgery if not for this simple and painless oversight! GOOD LUCK!!!!!!!
Hey Kimmie...I've had many epidurals (back issues and surgery). I'd take an epidural any day over morphine. I had Morphine after my resection and it is great for pain relief but after a few days of it you will bloat like an elephant. I retained 16 pounds of water Aweful! It came off in a few days but never again will I take a morphine IV and avoid the catheter if you can...your urethra will hurt for months. Like I told Kate...get the compression garnment also. GOOD LUCK!!!
Aweful! It came off in a few days but never again will I take a morphine IV and avoid the catheter if you can...your urethra will hurt for months. Like I told Kate...get the compression garnment also. GOOD LUCK!!!Thankyou 4 all the advice I seen an anaesthetist a couple of days ago he said as I was having my resection lapriscopic I would not need the epidural I'll be treated with some morphine and pain killers I am releived I just don't like the thought of it being left in my back and I am terrible with needles! what is the compression garment for? I have been told I'll only have minimal scarring it doesn't make your tummy all saggy does it? :S
Hi Kate26 - I am in the middle of my first resection. I had my first surgery in the Fall of 2011 and ended up with a temporary ileostomy because I had been on steroids so long that my tissue was weak. I'm scheduled to have the reversal surgery next week. Just remember, if you do have to have the bag it sounds like it will most likely be temporary and that is something to stay positive about!
I have been on steroids a while too:shifty-t: how long had u been on them, for them to have weakened your tissue?
sorry to have asked so many questions on your post Kate hopefully they are things you are wondering about to
xxHi Kimmy - I was on steroids for about 8 months before surgery and was also very badly inflamed in the area of my terminal ileum. Going into surgery I was told that there would be a 50/50 chance of a temporary ileostomy after surgery. My surgeon was great and said going into it that he would make whatever decision he felt was best to ensure minimal risk of leakage or other complications after the surgery. While I wasn't happy to wake up with the bag, I was comfortable knowing that my surgeon was trying to give me the safest solution possible.
As it turned out I did end up with the ileostomy. I've had it 4 months and am going in for the reversal in a few days (yay!). If you do end up with a temporary ileostomy, a good question to ask is whether it is a loop ileostomy or end ileostomy. My understanding is that the reversal for the loop ileostomy is much less complicated then the end ileostomy. Unfortunately I had an end ileostomy because my inflammation was so bad that it had stretched my intestine quite a bit - so my reversal surgery will be just as complicated as the first surgery - for my body that means another 6-8 weeks away from work
Also, on your question of epidural v. morphine... For my resection I had morphine. I only had three complaints/suggestions:
1) when I woke up from surgery I was in *excruciating* pain while they got the morphine going. I didn't expect this and my understanding is that it doesn't happen when you have the epidural. Note: in the moment, the pain was awful - but in reality it wasn't more than a few minutes and going into the second surgery I'm not so scared about it even though I expect it to happen again. Also, my pain was not necessarily related to the incision, it was mostly in my back and I think it was more related to the way I was laying on the operating table for so long.
2) If you have morphine, I'd suggest requesting a pain killer by mouth before they take you off the pump - going from a shot of morphine every 10 minutes to no pain killers is quite uncomfortable. Your doctor should make a pain prescription available to you as you transition off the pump.
3) I've never had an epidural, but I know people who have had it for other surgical procedures and my understanding is that it can make you pretty nauseous for a while after surgery. Not sure if this is a good or bad thing after a resection, since you can't eat for a bit anyway - but just thought I would share.
Sorry for the long post - but I hope it is helpful to you! Good luck on your upcoming surgery. I completely understand your apprehension. It hasn't been a fun experience, but I do feel so much better and I can eat again!
As it turned out I did end up with the ileostomy. I've had it 4 months and am going in for the reversal in a few days (yay!). If you do end up with a temporary ileostomy, a good question to ask is whether it is a loop ileostomy or end ileostomy. My understanding is that the reversal for the loop ileostomy is much less complicated then the end ileostomy. Unfortunately I had an end ileostomy because my inflammation was so bad that it had stretched my intestine quite a bit - so my reversal surgery will be just as complicated as the first surgery - for my body that means another 6-8 weeks away from work
Also, on your question of epidural v. morphine... For my resection I had morphine. I only had three complaints/suggestions:
1) when I woke up from surgery I was in *excruciating* pain while they got the morphine going. I didn't expect this and my understanding is that it doesn't happen when you have the epidural. Note: in the moment, the pain was awful - but in reality it wasn't more than a few minutes and going into the second surgery I'm not so scared about it even though I expect it to happen again. Also, my pain was not necessarily related to the incision, it was mostly in my back and I think it was more related to the way I was laying on the operating table for so long.
2) If you have morphine, I'd suggest requesting a pain killer by mouth before they take you off the pump - going from a shot of morphine every 10 minutes to no pain killers is quite uncomfortable. Your doctor should make a pain prescription available to you as you transition off the pump.
3) I've never had an epidural, but I know people who have had it for other surgical procedures and my understanding is that it can make you pretty nauseous for a while after surgery. Not sure if this is a good or bad thing after a resection, since you can't eat for a bit anyway - but just thought I would share.
Sorry for the long post - but I hope it is helpful to you! Good luck on your upcoming surgery. I completely understand your apprehension. It hasn't been a fun experience, but I do feel so much better and I can eat again!
One other thought Kimmie - You said you are afraid of needles. I'm not going to lie, regardless of morphine or epidural you are going to have needles before and after the surgery. Before my surgery they fit an IV, which stayed with me for about 3 days after the surgery both for the morphine, some antibiotics, fluids and some nutrients. After the surgery they came by once a day for a few days and took blood samples. Just try to think calm thoughts and take some deep breaths - don't watch if it makes you nervous. One of my nurses told me that she could tell when I got scared because my vein would 'disappear' and made it more difficult.
Also, the compression garment (or abdominal binder) is also supposed to help you feel more comfortable in moving around after the surgery (i.e., you will have some support and not feel like your incision will open when you move around). Moving around (to the extent possible) is helpful to your recovery. I didn't have this for my first surgery, but I will be requesting one for the next one. It makes a lot of sense to me and I think I would have been a lot more likely to get moving after my surgery with the extra support!
Also, the compression garment (or abdominal binder) is also supposed to help you feel more comfortable in moving around after the surgery (i.e., you will have some support and not feel like your incision will open when you move around). Moving around (to the extent possible) is helpful to your recovery. I didn't have this for my first surgery, but I will be requesting one for the next one. It makes a lot of sense to me and I think I would have been a lot more likely to get moving after my surgery with the extra support!
Jim (POPS)
Jim (Pops)
Hello, my resection was, well not expected. I had a lump on my apendix and I had lost 20lbs over the last year, that was last Nov. Well, I went in for a lipo operation to remove my apendex and woke up in the ICU with a ostomy bad and they said that the took about a foot of both the small and large bowel. They found crohons, funy I've been telling the Dr. for the last 15 years that I always had the big D and when I had a normal stool it was a supprise. He said IBS. I don't want to scare anyone but this is the rest of my story. On Nov. 10th 2011 I weigh 150lbs, had the resection without ostomy bad and spent 5 days in the hospital, got out and 2 days latter I was trying to have a bowel movement and I notice a 4"round spot of water I think on my "T" shirt so out of caution I went to the ER, they took ouy the stappels and took blood test everything looked good but they keep me over night just to keep a eye on me. The next day I was getting ready to go home, they final gave me a ham sandwitch to eat but before that the thought that it would be a good idea to have a CT scan, by my request. Now I was feeling fine and just wanted to go home. The took the CT and about 30 min. later 3 sergons walked into my room and ask me how I was feeling as they took away my sandwitch, I said fine and one of them said, well, you might feel fine but you resection came apart and you are "Septic" and need to get to the operation room STAT. That hit me right in the face, HARD, I tod them I wanted to call my wife and they said ok but if she doesn't get hear before we can get you in you will not see her till after. I said "no way, I'm going to see her first" then one of them said, " you are so full of SHIT and PUSS you only have about a 20% chance of coming out a live now, lets go. Well, my wife did make it before I went in, kissed , prayed, I love you and all that, the next thing I know I'm in ICU with a button of delata (i can't spell it) feeling no pain at all. The said I wasn't out of the woods yet, give them a few days. Well God looked down on me and took over. I never got a temp, they took care of all the pain, in a nut shell, they were wonderfull. I spent 3 days in ICU and 10 days in the reg. room. During the 2nd surgery they did give me a ostomy bag, but they said they can put me bact together in about 4 months. I went down to 121lbs in less than a month, had3 or 4 absesses, and to top it off, I'm retired and my pention provider sent me a letter while I was in ICU (It was open enrollment time) and said that they will no longer offer Kaiser that I have had for over 40 years, that will start on Jan 1 2012, it was Nov. 20th. Kaiser was wonderfull, when I went home someone came to my home every day for wound care, I had a neg pressure Vac, but when it hit Jan 1st it all stopped. I had called my new provider United Health Care on Dec.1st to put them on notice about my up coming needs and they said" they canot do anything until the policy goes into force, they would not even start getting things rolling. When the 1st came I was on my own, no more wound car, took the Vac, I couldn't get Untied to return any calls until Jan 12 or 13. on the 14th my wound got bad even though I was taking care of it the best I could. I was a medic in the Army and in Nam so I felt somewhat ok taking care of it, so I went back to Kaiser and the welcomed me with open arms, put me back in the hospital for two days and took care of my absess and sent me on my was and the kicker was when I left they told me" this stay and treatment is on the house" thats right. I got the charges in the mail the other day and it was $12,000 and in BIG letters it said THIS IS NOT A BILL, amount due $0. Now thats a true story.
Up date: I now have a great GI, Sergion and family doc. and I'm back up to 144lbs. My wound how ever is still not complety healed but will need no bandage within the next week. I feel really good, BUT all I do is sleep. I told my Dr. that because I don't think ists a good idea to be sleep'n 14-16hrs a day and all he could say was, you have been through HELL enjoy it while you can, your doing just fine.
So for all of you out there that have some fears about getting a resection or you feel sorry for yourself remmber, there is always someone out there having a harder time than you are. When its all over you will be happy. and someday it will be over. I can't wait till spring so I can come out of highbernation and start going fishing and doing some gardening. At 61 years old it takes a little longer to recover than when your younger. By the way, I would take pain meds over a epiudral anytime. My wife had one for her resection, yes we both have a bag of sh&* on our side but mine is temp, she got spinel menenjitice from it and almost died, thats another long story. I pray none of you have to go through what I had to go through. Love Pops
Up date: I now have a great GI, Sergion and family doc. and I'm back up to 144lbs. My wound how ever is still not complety healed but will need no bandage within the next week. I feel really good, BUT all I do is sleep. I told my Dr. that because I don't think ists a good idea to be sleep'n 14-16hrs a day and all he could say was, you have been through HELL enjoy it while you can, your doing just fine.
So for all of you out there that have some fears about getting a resection or you feel sorry for yourself remmber, there is always someone out there having a harder time than you are. When its all over you will be happy. and someday it will be over. I can't wait till spring so I can come out of highbernation and start going fishing and doing some gardening. At 61 years old it takes a little longer to recover than when your younger. By the way, I would take pain meds over a epiudral anytime. My wife had one for her resection, yes we both have a bag of sh&* on our side but mine is temp, she got spinel menenjitice from it and almost died, thats another long story. I pray none of you have to go through what I had to go through. Love Pops
thanks so much for all your advice yep my way of dealing with needles is to just look away! I am having blood tests all the time so am use to them and
I recently had an MRI scan were I had to have an IV put in my hand so at least I have had that done before. I have only been on steroids since the end
of November so no were near as long as u were my surgeon told me a temp bag was 1 of the risks of surgery but that this wasn't likely! was your surgery done lapriscopic or open? ive been told with the lapriscopic I will only have minimal scarring nothing bad at all which I'm hoping is true. I am still waiting on a date also it is drivin me mad not knowing I am supposed to stop meds 7 days before but don't no when to stop because I don't even have a rough date for surgery 1st dr told me within 3 weeks my anaesthetist told me on Thursday within a week but still no phone call frustrating I want it out the way so I can just stop worrying! :yfaint:
Wish u all the luck in the world for your surgery too xxx
Hi Kimmie -
My understanding is that the ability to have a resection laparoscopically depends on 1) your surgeon's comfort level with laparoscopic surgery (if he/she is talking about it, then they are comfortable) 2) the patient's age/relative health aside from crohn's (laparoscopic surgery takes longer, so if you are healthy from a heart and lungs perspective your body can more easily handle being under for the length of time needed) and 3) patient's weight (too much weight in the stomach can make it more difficult to maneuver the tools laparoscopically).
My first surgery was laparoscopic, and I am 33 and about 80 lbs overweight - so given that you're younger and more fit my guess is you won't have any problem getting the procedure laparoscopically. I have some fear that the second one will be more open because of my weight. But my surgeon can supposedly perform laparoscopic miracles, so I am keeping my fingers crossed!
As far as scarring goes, I have one small (about 2.5 inch) incision scar that starts at my navel and goes down and then I had four small 'puncture' holes around my stomach (where they put in the laparoscopy tools). After four months, the incision scar is healed but still looks like a red line and the puncture wounds I can barely even see. Be prepared for a bit of shock when you first see your incision - your stomach may look like a battle ground! But don't worry, the body is amazing at healing itself. I felt so disfigured after my surgery, then my aunt (who had a full open hysterectomy 2 years ago) showed me her stomach and you couldn't even tell she had an incision! She is in her 60s, so I'm thinking our 20/30 year old bodies should be able to heal up just as well!
Regarding the date of your surgery... are you in the US? If so, you should be able to get a date by selling your surgeon's office and asking. With my surgery, the surgeon's office scheduled his time, so they were able to tell me the day but then the hospital called the day before and told me what time to show up. Surgeons are usually scheduled out weeks in advance (aside from emergency cases of course) and if they are sending you to an anesthesiologist then I would assume you are already on the calendar.
Our medical system is very strange - you have to pull information out of people. Keep that in mind while you are in the hospital. Ask lots of questions if you have them and ask for things that you need. It's also good to have someone you trust designated as an advocate to help you ask questions and remember information and instructions. You'll be so high on pain killers that it sometimes gets hard to remember things - my surgical team made rounds to check on me every morning at like 5 am or some crazy early time so I was drugged and half asleep when they would show up. I asked a friend to be there with me to help me remember what they said and I would also write down questions I had throughout the day so I was ready to ask them things when they came in.
I wish you the best too! Please feel free to ask any questions - it feels good to help ease someone else's fears (and takes my mind off my own!). My surgery is on thursday, but I'm hoping to stay active on this board via iPad because it has been so helpful to read other people's stories and know that I'm not alone in all this!
My understanding is that the ability to have a resection laparoscopically depends on 1) your surgeon's comfort level with laparoscopic surgery (if he/she is talking about it, then they are comfortable) 2) the patient's age/relative health aside from crohn's (laparoscopic surgery takes longer, so if you are healthy from a heart and lungs perspective your body can more easily handle being under for the length of time needed) and 3) patient's weight (too much weight in the stomach can make it more difficult to maneuver the tools laparoscopically).
My first surgery was laparoscopic, and I am 33 and about 80 lbs overweight - so given that you're younger and more fit my guess is you won't have any problem getting the procedure laparoscopically. I have some fear that the second one will be more open because of my weight. But my surgeon can supposedly perform laparoscopic miracles, so I am keeping my fingers crossed!
As far as scarring goes, I have one small (about 2.5 inch) incision scar that starts at my navel and goes down and then I had four small 'puncture' holes around my stomach (where they put in the laparoscopy tools). After four months, the incision scar is healed but still looks like a red line and the puncture wounds I can barely even see. Be prepared for a bit of shock when you first see your incision - your stomach may look like a battle ground! But don't worry, the body is amazing at healing itself. I felt so disfigured after my surgery, then my aunt (who had a full open hysterectomy 2 years ago) showed me her stomach and you couldn't even tell she had an incision! She is in her 60s, so I'm thinking our 20/30 year old bodies should be able to heal up just as well!
Regarding the date of your surgery... are you in the US? If so, you should be able to get a date by selling your surgeon's office and asking. With my surgery, the surgeon's office scheduled his time, so they were able to tell me the day but then the hospital called the day before and told me what time to show up. Surgeons are usually scheduled out weeks in advance (aside from emergency cases of course) and if they are sending you to an anesthesiologist then I would assume you are already on the calendar.
Our medical system is very strange - you have to pull information out of people. Keep that in mind while you are in the hospital. Ask lots of questions if you have them and ask for things that you need. It's also good to have someone you trust designated as an advocate to help you ask questions and remember information and instructions. You'll be so high on pain killers that it sometimes gets hard to remember things - my surgical team made rounds to check on me every morning at like 5 am or some crazy early time so I was drugged and half asleep when they would show up. I asked a friend to be there with me to help me remember what they said and I would also write down questions I had throughout the day so I was ready to ask them things when they came in.
I wish you the best too! Please feel free to ask any questions - it feels good to help ease someone else's fears (and takes my mind off my own!). My surgery is on thursday, but I'm hoping to stay active on this board via iPad because it has been so helpful to read other people's stories and know that I'm not alone in all this!
Thanks for all the information everyone! And Kimmie, I had a lot of the same questions too, so thanks for putting them out there! My surgery got scheduled for four weeks from now, so I'm just trying to remain calm and get as much information as possible before I go in for my pre-op appointment. Knowing that so many people have been through this is helpful!!
Jim (POPS)
Jim (Pops)
Kate26, You are doing the right thing trying to learn as much as you can before hand, but let me please worn you about a bridge we ALL cross, that is the fear that we face. Please don't search the internet to settle your nerves, stay ay this site. There are alot of bad stoies out there and my story was not very supportive to say the least, BUT, in the end ALL turned out OK. You will be just fine, there will be some bumps in the road, some bigger than otheres but you will come out the other end in a much better place.
I was always so scared all the time, I didn't even want to hear what the Dr. had to say. Even if I had a fear without any foundation I would biuld a foundation for that fear. What I'm try'n to say is, everyone around you, Dr's nurses, family and yes even this very website are all hear to hel you with everything including calming you down. You will thank your self afterwards thats for sure. The most amazing thing that cane to my mine after all I went through is that I did it. Even though I was so afread to do it, I DID IT, and now I am so happy because I am some much more helthy than before. It's like having a new life. I thank God, some may not, but I sure do everyday. Good luck and keep us posted. Right after is when you sometimes really need to talk to someone and we arre all hear for you. Love Pops
I was always so scared all the time, I didn't even want to hear what the Dr. had to say. Even if I had a fear without any foundation I would biuld a foundation for that fear. What I'm try'n to say is, everyone around you, Dr's nurses, family and yes even this very website are all hear to hel you with everything including calming you down. You will thank your self afterwards thats for sure. The most amazing thing that cane to my mine after all I went through is that I did it. Even though I was so afread to do it, I DID IT, and now I am so happy because I am some much more helthy than before. It's like having a new life. I thank God, some may not, but I sure do everyday. Good luck and keep us posted. Right after is when you sometimes really need to talk to someone and we arre all hear for you. Love Pops
Kate, I had small bowel ressection 1 year ago with great recovery! The nurse had me up 8 hrs after being cut open and this helped with my body recovering. I researched my surgeon and knew he was great at his job, so I felt comfy with him. The whole process is scary, but really just think about feeling normal in a while after the surgery, I can eat anything and have gained 27 lbs, Good luck,Billy.
The compression garment keeps your abdominal tissue in place against your abdominal wall and your abdominal muscles in place symetrically. The first 3 to 4 weeks of healing is crucial when everything is healing and finding its home after it was cut and seperated. Otherwise...your abs and skin will be loose weeks and months ahead. Initially, I could live with my scar but now it's crooked, I have three dents and one looks like belly button #2 and my original BB is obscured...because the skin adhered unevenly to the abdominal muscles and the ab muscles seperated and are high risk for hernia. I'm slender, physically fit except for my six pack that is gone My plastic surgeon is the one who asked, "Did your surgeon give you a compression garment?" When I said, "No?" he was annoyed!
My suspicious evil twin will tell you that physcians grease each others palms...if you dont wear the garment...you will see plastic surgeon unless you get lucky and lie flat for four weeks. Kimmie...PLEASE....ask for it...INSIST on it...my corrective surgery is considered not medically necessary and is $5000 because the insurance companies will rather gamble on my not getting a hernia from the weak ab muscles.
Please...wear it!
My plastic surgeon is the one who asked, "Did your surgeon give you a compression garment?" When I said, "No?" he was annoyed!My suspicious evil twin will tell you that physcians grease each others palms...if you dont wear the garment...you will see plastic surgeon unless you get lucky and lie flat for four weeks. Kimmie...PLEASE....ask for it...INSIST on it...my corrective surgery is considered not medically necessary and is $5000 because the insurance companies will rather gamble on my not getting a hernia from the weak ab muscles.
Please...wear it!
- Joined
- Nov 27, 2010
- Messages
- 161
Kimmy86 and Lori,
If you're having your operation laparoscopically, there shouldn't be any need for a compression garment. The incision sites are generally very small, with the longest scar only being around 2 inches or so - and therefore there should be minimal/no problems with abdominal muscles and abnormal skin adherence. If it's any help, these are my incision sites 3 weeks after surgery.
Of course, if you're having to have more a more invasive procedure, with a larger opening/incision, then of course get all the help you can, and get a compression garment sorted (!)
Tony.
If you're having your operation laparoscopically, there shouldn't be any need for a compression garment. The incision sites are generally very small, with the longest scar only being around 2 inches or so - and therefore there should be minimal/no problems with abdominal muscles and abnormal skin adherence. If it's any help, these are my incision sites 3 weeks after surgery.
Of course, if you're having to have more a more invasive procedure, with a larger opening/incision, then of course get all the help you can, and get a compression garment sorted (!)
Tony.
Hi Kimmy & Kate - I just wanted to check in with you both as I am 5 days post-surgery and very pleased with the outcome. Don't get me wrong it wasn't a picnic, but I was out of the hospital 3 days after surgery and didn't experience a lot of pain. They were able to do my resection laparoscopically so I have one incision that is no bigger than 2 inches on the right side of my stomach and two puncture wounds on the left side. Very similar to leithcote except my incision is vertical instead of horizontal. I think I would have preferred horizontal.
I was also up and walking around the morning after surgery. The first day I was allowed to sip a small amount of liquids and then the second day I was allowed unlimited liquids. My biggest annoyance was being on the IV for fluids. You have to be able to tolerate enough liquids before they will take you off the IV.
Five days out I am mostly still on a liquid diet, although I added mashed potatoes today and they tasted heavenly! Docs say it will take a few weeks for my bowel to return to normal.
My surgeon said that I still have active Crohn's, so I will have to go on a maintenance drug soon. I was hoping the surgery would bring full remission, but at least it removed the worst (I had a blockage at the terminal ileum).
Anyway, best wishes to both of you as your surgery dates approach!
I was also up and walking around the morning after surgery. The first day I was allowed to sip a small amount of liquids and then the second day I was allowed unlimited liquids. My biggest annoyance was being on the IV for fluids. You have to be able to tolerate enough liquids before they will take you off the IV.
Five days out I am mostly still on a liquid diet, although I added mashed potatoes today and they tasted heavenly! Docs say it will take a few weeks for my bowel to return to normal.
My surgeon said that I still have active Crohn's, so I will have to go on a maintenance drug soon. I was hoping the surgery would bring full remission, but at least it removed the worst (I had a blockage at the terminal ileum).
Anyway, best wishes to both of you as your surgery dates approach!
Mashed potatoes and butter is a girl's best friend - who'd a thought? After you progress from liquids - keep eating the soft foods for a LONG time..your bowels need about eight (8)weeks to heal minimum (not "a few" sorry doc) in the meanwhile...Mashed potatoes are my heroine for weight gain , along with egg salad, tuna fish, yogurt for proteins and liver...pureed.. <<<Need your iron!!
Make your diet at YOUR pace...my discharge papers said "regular diet"..<<<WHAT. Yah can I have a whole grain with double flax seed please? WHOA NO WAY! OUCH!!!
Eat what YOU can tolerate...you'll figure that out real fast.
God speed healing!
<<<Need your iron!! Make your diet at YOUR pace...my discharge papers said "regular diet"..<<<WHAT. Yah can I have a whole grain with double flax seed please? WHOA NO WAY! OUCH!!!
Eat what YOU can tolerate...you'll figure that out real fast.
God speed healing!
Jim (POPS)
Jim (Pops)
Lori,
You are spot on with your diet. I had a resection in Nov. 2011 and then 7 days later it came apart and I was septic, ended up with a ostomy bag and like you when I went home they said regular diet. BULL CRAP. I found out reel fast that certin foods didn't work. When I had the 1st operation(resection) Nov 10th I was 140lbs, then I went septic and spent 14 days more in the hospital and went down to 121lbs. When I got out of the hospital I came home and it was GAME ON to gain LBS, well I found out that getting backed up is very eazy. You really got to watch what you eat. I was waking up in the middle of the night when sleeping on my back because of the ostomy bag and my bag was empty and my tummy was full I could tell it. No real pain but on the edge, I could tell. I would set on the side of the bed for about 1/2 hour and my bag started to get some stuff in it, so I would set there till I felt better and I thought enough had come out. Another thing that helps un=clog is to drink 2 choc. Insure in a large cup and make it hot in the microwave, about 2 min. but be careful, it will overflow if you do it more than 2 min. There is no fiber in Insure or most of the Protin Drinks. I perfer "TOP CARE" brand, choc and I add a pack of hot coco mix to it AFTER I microwave it. If you want it hotter, heat it at 20 sec intervolts. This will un-plug you pretty fast, it's also nice to have in the middle of the night if you don't have to go to work the next day. Your list of foods are ALL great choices, I have also found a protin bar that works like a champ. They are called PURE PROTIN, the choc, are the boom, taste like candy and they have 20G of protin per bar. ALL of there flavores are wonderful, they arnt cheep, 0n sale 2 for 3 bucks. I have went back up to 146lbs and starting to feel better. I'm 61 so I heel slower than most and had crohons for 15 years and didn't know it. I thought I had IBS and just lived with it. In 2011 I lost 30lbs and they found something with my apendix fom a colonoscopy, when they went in they found a very large mass. of crohons and removed it along with 12" of upper and 12" of lower interst. SURPRISE. I wake up in the hospital and think, I didn't ask for this. Then when I went septic, well, I was real upset. I just retired and life was going to be good I thought. I have calmed down alot. It is what it is and I plan on making the best of it. Hell, I feel much better than before, I don't look forward to the re-conection at all, I meen I hate the bag but I'm scared of going septic again. I almost lost my life. BUT, The Dr. said that I was very unhealthy then and I will be health when they reconect. Well, got to go, the old battery like came on and the laptop is going to CRASH.
Back to the food. If someone needs to gain lbs, eat as mch as you want up untill about 6:00pm, then stop until you go to bed. BUT just to make sure I get a little more protin and not back up, I always have a BIG bowl of ice cream before I go to bed. lmao. works great.
Other foods that are good are,
Bananas, avocado, apple sause, peamut butter and butter sandwich, yum w/white bread, no wheat bread or bread w/seeds. My wife thinks I'm crazy, I make what I call a Micky D's PB & J. I use 3 slices of white bread (home made if I'm a good boy and my wife makes it for me) peanut butter on 1 slice, butter on the next slice and lay the butter side on the peanut butter, then jelly on the 3rd piece and BAM, you got a MICKY D's triple decker "samitch" This has about 5-600 cals and around 15g of protin. yum. I'm getting hungery.
Talk to you all soon. Pops
That to ya all soon. "Pops"
You are spot on with your diet. I had a resection in Nov. 2011 and then 7 days later it came apart and I was septic, ended up with a ostomy bag and like you when I went home they said regular diet. BULL CRAP. I found out reel fast that certin foods didn't work. When I had the 1st operation(resection) Nov 10th I was 140lbs, then I went septic and spent 14 days more in the hospital and went down to 121lbs. When I got out of the hospital I came home and it was GAME ON to gain LBS, well I found out that getting backed up is very eazy. You really got to watch what you eat. I was waking up in the middle of the night when sleeping on my back because of the ostomy bag and my bag was empty and my tummy was full I could tell it. No real pain but on the edge, I could tell. I would set on the side of the bed for about 1/2 hour and my bag started to get some stuff in it, so I would set there till I felt better and I thought enough had come out. Another thing that helps un=clog is to drink 2 choc. Insure in a large cup and make it hot in the microwave, about 2 min. but be careful, it will overflow if you do it more than 2 min. There is no fiber in Insure or most of the Protin Drinks. I perfer "TOP CARE" brand, choc and I add a pack of hot coco mix to it AFTER I microwave it. If you want it hotter, heat it at 20 sec intervolts. This will un-plug you pretty fast, it's also nice to have in the middle of the night if you don't have to go to work the next day. Your list of foods are ALL great choices, I have also found a protin bar that works like a champ. They are called PURE PROTIN, the choc, are the boom, taste like candy and they have 20G of protin per bar. ALL of there flavores are wonderful, they arnt cheep, 0n sale 2 for 3 bucks. I have went back up to 146lbs and starting to feel better. I'm 61 so I heel slower than most and had crohons for 15 years and didn't know it. I thought I had IBS and just lived with it. In 2011 I lost 30lbs and they found something with my apendix fom a colonoscopy, when they went in they found a very large mass. of crohons and removed it along with 12" of upper and 12" of lower interst. SURPRISE. I wake up in the hospital and think, I didn't ask for this. Then when I went septic, well, I was real upset. I just retired and life was going to be good I thought. I have calmed down alot. It is what it is and I plan on making the best of it. Hell, I feel much better than before, I don't look forward to the re-conection at all, I meen I hate the bag but I'm scared of going septic again. I almost lost my life. BUT, The Dr. said that I was very unhealthy then and I will be health when they reconect. Well, got to go, the old battery like came on and the laptop is going to CRASH.
Back to the food. If someone needs to gain lbs, eat as mch as you want up untill about 6:00pm, then stop until you go to bed. BUT just to make sure I get a little more protin and not back up, I always have a BIG bowl of ice cream before I go to bed. lmao. works great.
Other foods that are good are,
Bananas, avocado, apple sause, peamut butter and butter sandwich, yum w/white bread, no wheat bread or bread w/seeds. My wife thinks I'm crazy, I make what I call a Micky D's PB & J. I use 3 slices of white bread (home made if I'm a good boy and my wife makes it for me) peanut butter on 1 slice, butter on the next slice and lay the butter side on the peanut butter, then jelly on the 3rd piece and BAM, you got a MICKY D's triple decker "samitch" This has about 5-600 cals and around 15g of protin. yum. I'm getting hungery.
Talk to you all soon. Pops
That to ya all soon. "Pops"
Suvii
An old fart from North!
- Joined
- Dec 1, 2011
- Messages
- 223
Hi Kate!
I understand you're a little freaked out. But you know what, try not to be. It's going to be just fine! I was really nervous since the day my GE mentioned surgery for the first time and I waited for 4 months to go to the surgery.
You can read my experience from my thread.
Hang in there! I'm sure you're going to be okay - a new, improved life is waiting for you too!
I understand you're a little freaked out. But you know what, try not to be. It's going to be just fine! I was really nervous since the day my GE mentioned surgery for the first time and I waited for 4 months to go to the surgery.
You can read my experience from my thread.
Hang in there! I'm sure you're going to be okay - a new, improved life is waiting for you too!
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Jim (POPS)
Jim (Pops)
Lori,
I might have to start taking colace, but I have a ostomy, my wife does also ( she had colitis and had her complete colin removed years ago) she said I may not need it , I just need to chew better and watch what I eat. GOOD NEWS, I went to my new GI Doc, on Friday and he said the operation report said that they got ALL of the crohons. He is doing a x-ray with contrast to make sure, but he said I don't need to take Pentasa anymore. But he did say it could come back. Now all I have to do is get reconected. And I'm not looking forward to that. But it will put me back to normal , well as much as possable. that was good news. It's been 4 months to the day since my first operation and then 8 days later I went septic because the thing came apart. What I'm getting at is, I still have a small bandage on my wound, should be gone this coming week. Man I must have been really sick and along with my age (61) it sure took me a long time to heel.
You know this crap can really play with your mind. One day everything seams good and the next I think I'm really sick, But I'm not really. When they told me after surgery that I need to just set back and do NOTHING till I'm heeled, that was very hard for me, I'm a very active 61 year old, I use to go fishing , do veggy garden work ALL day, I never set around, but I did what they said and became a old man that just sets around and sleeps all the time. Sometimes I sleep 16 hours a day. When I went to the GI Dr. the other day evry question I ask him he said, you just gained over 35lbs in the last 3 months. In other words there is nothing wrong with you, he did say to get of my ass and get back into condition again. I just laughed beause he knew how hard it was for me to do NOTHING for 4 months, and now I can't do anything without getting tired. So, my daughter and I are going to join a GYM and I'll start doing more garden work every day. I have worked out there for about 1-2 hours a day for the last few days and I can see things start to come around. Now that I'm back over 150lbs. I mentally feel much better.
It would be real helpfull if I had more friends around, before the crohons I owned a Production Co. JVD Productions and I was on the road managing bands, booking concert tours and had a crew of 6 people that worked the local sound co. that would run sound for alot of the California festivals, fairs and alot of concerts. I had to sell the company because I coundn't keep up and now ALL my friends are on the roadtouring playingconcerts or playing alot of clubs all over the place. During the summer I'll start getting out to see some of them more. Most of them stop by to say hi when they come through California. When I was in the hospital BB King came to see me at around 1:30am one night when he was playing near by. Man I miss all those guys. But on the other hand, I now have time to be with my family, wife of 38 years, 2 boys 37, 34 and a daughter 28 and 5 grand kids and one on the way. I always made time for the family when I owned JVD or I would fly some of them to where we were for the weekend and what not. I don't drink or do drugs, (not normal for the life of a musician) so I always had my head on stright. I think.lol. This spring I'm going back on stage for the first time in YEARS. Our old band "FLASHBACK" is doing a concert for the Amer. cancer society. It will be fun.:biggrin: I stopped play'n on stage in 1988 and started the Production Co. in 2007 I played one show (1 hour) for charity. This is going to be a blast.
Sorry for going on and on, just feel like talking tonight I guess. Nothing else to do Talk to you later. Have a great weekend, but most of all I wish everyone good health and peace of mind. God bless you all.
Last thing, when I saw the GI Dr. I was up to 151.7, pack'n em on, I love it.:lol2:
Pops.............................
I might have to start taking colace, but I have a ostomy, my wife does also ( she had colitis and had her complete colin removed years ago) she said I may not need it , I just need to chew better and watch what I eat. GOOD NEWS, I went to my new GI Doc, on Friday and he said the operation report said that they got ALL of the crohons. He is doing a x-ray with contrast to make sure, but he said I don't need to take Pentasa anymore. But he did say it could come back. Now all I have to do is get reconected. And I'm not looking forward to that. But it will put me back to normal , well as much as possable. that was good news. It's been 4 months to the day since my first operation and then 8 days later I went septic because the thing came apart. What I'm getting at is, I still have a small bandage on my wound, should be gone this coming week. Man I must have been really sick and along with my age (61) it sure took me a long time to heel.
You know this crap can really play with your mind. One day everything seams good and the next I think I'm really sick, But I'm not really. When they told me after surgery that I need to just set back and do NOTHING till I'm heeled, that was very hard for me, I'm a very active 61 year old, I use to go fishing , do veggy garden work ALL day, I never set around, but I did what they said and became a old man that just sets around and sleeps all the time. Sometimes I sleep 16 hours a day. When I went to the GI Dr. the other day evry question I ask him he said, you just gained over 35lbs in the last 3 months. In other words there is nothing wrong with you, he did say to get of my ass and get back into condition again. I just laughed beause he knew how hard it was for me to do NOTHING for 4 months, and now I can't do anything without getting tired. So, my daughter and I are going to join a GYM and I'll start doing more garden work every day. I have worked out there for about 1-2 hours a day for the last few days and I can see things start to come around. Now that I'm back over 150lbs. I mentally feel much better.
It would be real helpfull if I had more friends around, before the crohons I owned a Production Co. JVD Productions and I was on the road managing bands, booking concert tours and had a crew of 6 people that worked the local sound co. that would run sound for alot of the California festivals, fairs and alot of concerts. I had to sell the company because I coundn't keep up and now ALL my friends are on the roadtouring playingconcerts or playing alot of clubs all over the place. During the summer I'll start getting out to see some of them more. Most of them stop by to say hi when they come through California. When I was in the hospital BB King came to see me at around 1:30am one night when he was playing near by. Man I miss all those guys. But on the other hand, I now have time to be with my family, wife of 38 years, 2 boys 37, 34 and a daughter 28 and 5 grand kids and one on the way. I always made time for the family when I owned JVD or I would fly some of them to where we were for the weekend and what not. I don't drink or do drugs, (not normal for the life of a musician) so I always had my head on stright. I think.lol. This spring I'm going back on stage for the first time in YEARS. Our old band "FLASHBACK" is doing a concert for the Amer. cancer society. It will be fun.:biggrin: I stopped play'n on stage in 1988 and started the Production Co. in 2007 I played one show (1 hour) for charity. This is going to be a blast.
Sorry for going on and on, just feel like talking tonight I guess. Nothing else to do Talk to you later. Have a great weekend, but most of all I wish everyone good health and peace of mind. God bless you all.
Last thing, when I saw the GI Dr. I was up to 151.7, pack'n em on, I love it.:lol2:
Pops.............................
Last edited:
Surgery Finished!
Hey everyone!
I had my surgery last Friday and am recovering gin the hospital. I didn't need a bag which I was really happy about. Thank you all so much for the support and encouragement over the last few months. It was really helpful to hear your experiences and get advice about what to ask my doctors. Hopefully I will get to start on clear liquids today and maybe leave the hospital by Wednesday or Thursday!
Thanks again!
Kate
Hey everyone!
I had my surgery last Friday and am recovering gin the hospital. I didn't need a bag which I was really happy about. Thank you all so much for the support and encouragement over the last few months. It was really helpful to hear your experiences and get advice about what to ask my doctors. Hopefully I will get to start on clear liquids today and maybe leave the hospital by Wednesday or Thursday!
Thanks again!
Kate
Jim (POPS)
Jim (Pops)
Way to go Kate, Your life will be soooo much better now. I'm glad you didn't get a "bag" I hate mine but it will be gone in a few months when they do the take down. Remmber, when they tell you it's ok to have sold food, take it slow and eat what you know is ok and interduce new foods slowly. Don't do like I did and WENT FOR IT, I thought I WAS FREE. And now I am, it's great, I can eat anything and as much as I want now, but at first your body isn't use to it so take it slow for a while. I'm so happy for you because I remmber how happy I was when everything started to get better. Enjoy every second and thank the man up stairs if you belive. Pops.
Jim (POPS)
Jim (Pops)
Kate,
I forgot to say. Your recovery is NO APRIL FOOLS DAY thing. Arn't you glad for that. LOL
Pops
I forgot to say. Your recovery is NO APRIL FOOLS DAY thing. Arn't you glad for that. LOL
Pops
Hi Katie,
I have been following this thread and so glad your on the other end of your surgery now. I notice your in Chicago. My 28 year old son is probably facing surgery now as well. I wondered what hospital you had your surgery out of. We were sent to the Univ. of Chicago from his gastro for a second opinion consult and I knew then it was probably surgery. He has another test this week and we will know more then. I am told they are the best place for him to have this done and it is really far from our home. I don't mind if it is indeed the best option. But 100 mile round trip daily is tough and I want to be able to visit him everyday. Luthern General is way closer but I wasn't sure if anyone had any experience with either hospital for surgery. Thanks.
I have been following this thread and so glad your on the other end of your surgery now. I notice your in Chicago. My 28 year old son is probably facing surgery now as well. I wondered what hospital you had your surgery out of. We were sent to the Univ. of Chicago from his gastro for a second opinion consult and I knew then it was probably surgery. He has another test this week and we will know more then. I am told they are the best place for him to have this done and it is really far from our home. I don't mind if it is indeed the best option. But 100 mile round trip daily is tough and I want to be able to visit him everyday. Luthern General is way closer but I wasn't sure if anyone had any experience with either hospital for surgery. Thanks.
Hi Fourlocos,
I went to the University of Chicago for my surgery and they are pretty great. My surgeon is an expert in the field and has done a ton of bowel resections, so I felt extremely well taken care of. I have no experience with Lutheran General but UCMC has been great so far. Obviously you need to go to the hospital that works best for you and your son, but if you end up at UCMC you will be in excellent hands. Good luck to your son!
Kate
I went to the University of Chicago for my surgery and they are pretty great. My surgeon is an expert in the field and has done a ton of bowel resections, so I felt extremely well taken care of. I have no experience with Lutheran General but UCMC has been great so far. Obviously you need to go to the hospital that works best for you and your son, but if you end up at UCMC you will be in excellent hands. Good luck to your son!
Kate
Jim (POPS)
Jim (Pops)
Fourlocos,
The key is not the Hospital but the surgeon. Make sure that he/she is a colo-rectal sergeon. And the older the better. Both my wife and I have had a re-section. I have crohons and my wive HAD COLITIS. 25 years ago they did a re-section that included the removel of her complete colon and they made a ileoanalreservoir. That was god for 20 +years and 2 years ago they removed the reservoir because scar tissue was blocking her and they said it was time to have a permanent ostomy. She did and has been completly well since. The same Dr. did all of her operations, he was a pioneer in the ileoanalreservoir and was 45 then, he is now 70 now. My sergeon is 60 years old and just happen to be a friend of my wifes Dr. Most all colo-rectal sergeons that have been doing it for a while 15+ years do this type of operation on a weekly basis and stay up to date on all the new procdures. Also, when they operate on the intestines there are specal things the Dr. has to ay attention to because people with crohons are prone to ceten things. Like, just a small,(very small) scratch on the intestines by one of the insterments could end up becoming a fislua and this type of Dr. KNOWS all that. My wifes Dr. (Dr. Palmer) has become a very good family friend over the years, he is now retired as I am and we go fishing together sometimes, so we talk about this kind of stuff. Itryed to get him to do my operation but he wants to stay retired. The point is, it's not the hospital, it's the DR. Ask your GI Dr. the chances are he knows someone like Dr. Palmer and ask questions, how long have they been doing this, are they colo-rectal certified and any other questions.
Good luck. Pops
The key is not the Hospital but the surgeon. Make sure that he/she is a colo-rectal sergeon. And the older the better. Both my wife and I have had a re-section. I have crohons and my wive HAD COLITIS. 25 years ago they did a re-section that included the removel of her complete colon and they made a ileoanalreservoir. That was god for 20 +years and 2 years ago they removed the reservoir because scar tissue was blocking her and they said it was time to have a permanent ostomy. She did and has been completly well since. The same Dr. did all of her operations, he was a pioneer in the ileoanalreservoir and was 45 then, he is now 70 now. My sergeon is 60 years old and just happen to be a friend of my wifes Dr. Most all colo-rectal sergeons that have been doing it for a while 15+ years do this type of operation on a weekly basis and stay up to date on all the new procdures. Also, when they operate on the intestines there are specal things the Dr. has to ay attention to because people with crohons are prone to ceten things. Like, just a small,(very small) scratch on the intestines by one of the insterments could end up becoming a fislua and this type of Dr. KNOWS all that. My wifes Dr. (Dr. Palmer) has become a very good family friend over the years, he is now retired as I am and we go fishing together sometimes, so we talk about this kind of stuff. Itryed to get him to do my operation but he wants to stay retired. The point is, it's not the hospital, it's the DR. Ask your GI Dr. the chances are he knows someone like Dr. Palmer and ask questions, how long have they been doing this, are they colo-rectal certified and any other questions.
Good luck. Pops
Such great advice Pops thanks so much. Your so right. Kate we saw Dr. Hanan there last week. I felt very comfortable with him and as I told my son, if that is where it is best for us, that is where he will have surgery. I know he had surgery years ago for a pilonidol cyst reconstruction and I had searched till I found the right doctor to do that one, and it was colon rectal also, we went to Rush for it. Thanks so much didn't mean to hijack your thread. I have watched it with great interest and am so happy your on the mend Kate!
Hi Fourlocos - Is staying overnight at the hospital an option to save you the round trip? My hospital room (in Cleveland, OH) had a convertible couch/bed and I was allowed to have overnight visitors. Not incredibly comfortable for the guest - but a big help to the patient and also allows you to be there for early morning 'rounds'. I found it very helpful to have someone with me during the surgical team early morning visits so I could have someone help me remember what directions were given, etc.
Best wishes to your son and keep us posted!
Jim (POPS)
Jim (Pops)
Fourlocos and Kate,
This is getting to be a very good conversation for all 3 of us. Ya, My room also had a coach/bed and Kate you are right, It's nice to have someone with you until they take "THE BUTTON":yrolleyes: (pain meds by IV, the best lol) away from you and for one more day. Always have someone with you when you check out of the place. The stuff they give you to put you under can sometimes affect you for up to a month or longer, although most of the time it's 2-4 days in regards to short term memmory. Also make sure you get OUT OF BED as much as you can and walk around a few times a day. If your only in the hospital for 5-7 days it's not to bad, but if you don't walk, you will still be laying around at home alot. Not good. The 2nd time I was in the hospital I was there for 3 weeks, the re-section came apart and man that kicked my butt. I didn't walk very much until the last few days and belive me I'm stil paying for it. They told me when I went home to do nothing because I am a very active 61 years old, with running, fishing every day, garden. So when I came home I did as I was told. Now I'm working on getting back in condition. up until last week I was sleeping 14-16 hours a day, missing ALL of my NEW LIFE:lol2:, and it is to wonderful to sleep away. I sound like I'm trying to school you, I'm sorry I don't want anyone to make the same mistakes I did. And one more thing. (still school'n) get off of the Norco or what ever they give you for pain when you go home as soon as you can. I had complacations and needed them and now I don't need them but my body says, "O Yes you do" I'm going down slowly in my doseage. This stuff is nothing to play with. You can get hooked on as little as 2 a day and your body will tell you it's no fun. Can't wait till I'm off of them. Just food for though.
Kat, Thanks for shairing with all of us while in the hospital and Fourlocos, good luck, things will be fine.
And onMYown, thank you for the bed info. If who ever stays with you, if they Love you they won't complain about the bed. If they do, tell them if they keep it up you will trade places with them. Them won't do it LOL.
May you all have a blessed week, set back and look at how much better things will be soon.
Pops
This is getting to be a very good conversation for all 3 of us. Ya, My room also had a coach/bed and Kate you are right, It's nice to have someone with you until they take "THE BUTTON":yrolleyes: (pain meds by IV, the best lol) away from you and for one more day. Always have someone with you when you check out of the place. The stuff they give you to put you under can sometimes affect you for up to a month or longer, although most of the time it's 2-4 days in regards to short term memmory. Also make sure you get OUT OF BED as much as you can and walk around a few times a day. If your only in the hospital for 5-7 days it's not to bad, but if you don't walk, you will still be laying around at home alot. Not good. The 2nd time I was in the hospital I was there for 3 weeks, the re-section came apart and man that kicked my butt. I didn't walk very much until the last few days and belive me I'm stil paying for it. They told me when I went home to do nothing because I am a very active 61 years old, with running, fishing every day, garden. So when I came home I did as I was told. Now I'm working on getting back in condition. up until last week I was sleeping 14-16 hours a day, missing ALL of my NEW LIFE:lol2:, and it is to wonderful to sleep away. I sound like I'm trying to school you, I'm sorry I don't want anyone to make the same mistakes I did. And one more thing. (still school'n) get off of the Norco or what ever they give you for pain when you go home as soon as you can. I had complacations and needed them and now I don't need them but my body says, "O Yes you do" I'm going down slowly in my doseage. This stuff is nothing to play with. You can get hooked on as little as 2 a day and your body will tell you it's no fun
. Can't wait till I'm off of them. Just food for though. Kat, Thanks for shairing with all of us while in the hospital and Fourlocos, good luck, things will be fine.
And onMYown, thank you for the bed info. If who ever stays with you, if they Love you they won't complain about the bed. If they do, tell them if they keep it up you will trade places with them. Them won't do it LOL.
May you all have a blessed week, set back and look at how much better things will be soon.
Pops
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Jim (POPS)
Jim (Pops)
on MYown,
I wil be talking to you soon. I will be getting my reversal surgery in a few months and I am having 2nd thoughts. Remmber I went septic with the resection, but I HATE this bag. Right now I want to change it because it's burning but I just ate about 2 1/2 hours ago and now is not the time to try. You know what I meen. At least when I go to bed the fluid gets thicker, I can sleep most of the time if I sleep on my back and when I wake up in the A.M. I try to sneak to my changing location try'n to trick my body that I'm still sleep'n and change it. Most of the time it works if I haven't eaten in about 12 hours, but sometimes as they say , $%^% hits the fan, the only thing missing is the fan, I hate that LOL.
Thanks for being hear for all our support.
Pops
I wil be talking to you soon. I will be getting my reversal surgery in a few months and I am having 2nd thoughts. Remmber I went septic with the resection, but I HATE this bag. Right now I want to change it because it's burning but I just ate about 2 1/2 hours ago and now is not the time to try. You know what I meen. At least when I go to bed the fluid gets thicker, I can sleep most of the time if I sleep on my back and when I wake up in the A.M. I try to sneak to my changing location try'n to trick my body that I'm still sleep'n and change it. Most of the time it works if I haven't eaten in about 12 hours, but sometimes as they say , $%^% hits the fan, the only thing missing is the fan, I hate that LOL.
Thanks for being hear for all our support.
Pops
Yes staying overnight is what I will probably do. So how do you know who is a good surgeon? Where would you get that info other than your own doctor's referral? Would that be more word of mouth from other people with the disease? I wish they had more of an up to date doctor directory here. I found nothing considering the U of C is suppose to be the 6th in the nation for gastro.
Jim (POPS)
Jim (Pops)
Fourlocos,
If you belong to a HMO, I would talk to the nuresses in the sergorey dept. they ALWAYS know the best of the best, if you don't, I would talk to your GI Dr. and ask him straght-up, if he was going to have this operation what coloin-rectal sergion would he us. Also you could call a few GI Dr. that you don't use and tell them you are looking for a C. R Sergion and get some names. after a while you see a trend and the same name pop'n up. You might be over thinking this a little too much as well. although I don't think you can ever over think anything, but the fact is, if you have crohns and you are going to have a resection you do have a higher possability of complacations. Thats just the nature of crohns.
Every state has info on ALL Dr. on line that tells if they have had any problums in the past. Just Google there name.
Truth is, I think, if you fine a CR surgion that is over 45 years old with a clean record you will be just fine. Remmber, they do this type of operation each week. This is a very comin operation.
One other hint, talk to everyone in your GI office about it.Down to the people that ans. the phone, they love to talk. Ask them who do you know that does alot of CR sergery that they know. And also remmber that it's not just the Dr. There is a complete team in the room doing the operation and the head sergion isn't going to do anything to dum infront of them, and most CR sergery there is a intern present learning from YOUR Dr. I think you will do just fine. One of my best friends is a general sergion and is only 35 years old, only 3 years on his own. As he tells me,"there are so many check and balances now days it's had to mess up. You'll be just fine
Crohns can be a very nasty illness sometimes and the Dr's that we trust to help us have a better quality of life while living with it, take pride in thier work, but sometimes there are things that are out of thier control. Even for the best of the best, again, the nature of crohn's. Really it's ALL in Gods hands. If you ask me, God will put the perfect Dr. in your life to handle the job at hand. I hope I don't afend you if you don't beleave, but thats the way I look at it. Chill out, I think thigs will be fine.
Pops
If you belong to a HMO, I would talk to the nuresses in the sergorey dept. they ALWAYS know the best of the best, if you don't, I would talk to your GI Dr. and ask him straght-up, if he was going to have this operation what coloin-rectal sergion would he us. Also you could call a few GI Dr. that you don't use and tell them you are looking for a C. R Sergion and get some names. after a while you see a trend and the same name pop'n up. You might be over thinking this a little too much as well. although I don't think you can ever over think anything, but the fact is, if you have crohns and you are going to have a resection you do have a higher possability of complacations. Thats just the nature of crohns.
Every state has info on ALL Dr. on line that tells if they have had any problums in the past. Just Google there name.
Truth is, I think, if you fine a CR surgion that is over 45 years old with a clean record you will be just fine. Remmber, they do this type of operation each week. This is a very comin operation.
One other hint, talk to everyone in your GI office about it.Down to the people that ans. the phone, they love to talk. Ask them who do you know that does alot of CR sergery that they know. And also remmber that it's not just the Dr. There is a complete team in the room doing the operation and the head sergion isn't going to do anything to dum infront of them, and most CR sergery there is a intern present learning from YOUR Dr. I think you will do just fine. One of my best friends is a general sergion and is only 35 years old, only 3 years on his own. As he tells me,"there are so many check and balances now days it's had to mess up. You'll be just fine
Crohns can be a very nasty illness sometimes and the Dr's that we trust to help us have a better quality of life while living with it, take pride in thier work, but sometimes there are things that are out of thier control. Even for the best of the best, again, the nature of crohn's. Really it's ALL in Gods hands. If you ask me, God will put the perfect Dr. in your life to handle the job at hand. I hope I don't afend you if you don't beleave, but thats the way I look at it. Chill out, I think thigs will be fine.
Pops
Hi everyone
Sorry havnt been on here 4 a while just reading all your advice happy to hear you have had your surgery Kate I am still waiting I got a phone call from the hospital today to say I will have it next Sunday 29th April very very scared
Xx
Sorry havnt been on here 4 a while just reading all your advice happy to hear you have had your surgery Kate
I am still waiting I got a phone call from the hospital today to say I will have it next Sunday 29th April very very scaredXx
Jim (POPS)
Jim (Pops)
Kimmy86, Don't be scared about the operation. The chances are that it will make a very big differance for the good in your life. What type of operation are you having? A resection. Really, don't be scared, you will go to the prep room and can bring someone with you after they get your robe and IV in until they take you in the operation room. Tell them that you are having a panic attack and insist that they give you something for it, even if you are not to freeked out ask for it. They will give it to you for sure. Make sure you bring someone with you for support, it really helps. After they take you into the operation room it won't be long until you are out and the next thing you know you will wake up in recovery room and you should be in NO pain at all. They take care of that. Make sure that you talk to the Dr. the day before the operation and tell him you don't like pain and ask him what he will be doing for you.
I don't know anyone that hasn't felt better after thier operation, ya there is a small chance that there could be some complacations, but thats with any type of operation and you have a better chance of getting into a car wreak on the way to the hospital than having any complacations. I was realy freeked out leading up to the day and the day of the suergery I needed something to calm me down. You can ask the Dr during your pre-op to give you something to calm you down for the time leading up to the day. He should give it to you and if he starts to shine you on, tell him, "You don't understand, I REALLY NEED something" and if he says No, ask, "Why not", be a ass if you have to, your paying for the operation and if the Dr. has been doing this for some time he will understand. I hate to go on and on, but I'm just trying to go over everything I can think of to help you have a possative outcome. Your going to be just fine.
About recovery. If you are going to be in the hospital after words make sure to bring your laptop, PJ's (after a day you can slip them on and they won't say anything. The robes suck. My wife made me or altered a T shirt that was cool. She cut the top of the sleves fom the neck to the end of the arm and put some velcro on it so I could open them. OOOOO it was a long T shirt. Or you could do that to a dress like PJ. Slippers, and something to read. (I don't meen to sound like I know everything because I don't FOR SURE) I'm just try'n to help.
I wish you the best, and make sure that you stay in contact with all of us while your in the hospital. You will be surprized how much support you will get from this group.
Also if your going to have a ostomy I can give you some detailed tips that will help alot. The training they give you in there is not that good. I have came up with some really creative things that even the Dr. and nurses WOW over. They help alot.
Good luck, and may God bless and protect you.
Jim
I don't know anyone that hasn't felt better after thier operation, ya there is a small chance that there could be some complacations, but thats with any type of operation and you have a better chance of getting into a car wreak on the way to the hospital than having any complacations. I was realy freeked out leading up to the day and the day of the suergery I needed something to calm me down. You can ask the Dr during your pre-op to give you something to calm you down for the time leading up to the day. He should give it to you and if he starts to shine you on, tell him, "You don't understand, I REALLY NEED something" and if he says No, ask, "Why not", be a ass if you have to, your paying for the operation and if the Dr. has been doing this for some time he will understand. I hate to go on and on, but I'm just trying to go over everything I can think of to help you have a possative outcome. Your going to be just fine.
About recovery. If you are going to be in the hospital after words make sure to bring your laptop, PJ's (after a day you can slip them on and they won't say anything. The robes suck. My wife made me or altered a T shirt that was cool. She cut the top of the sleves fom the neck to the end of the arm and put some velcro on it so I could open them. OOOOO it was a long T shirt. Or you could do that to a dress like PJ. Slippers, and something to read. (I don't meen to sound like I know everything because I don't FOR SURE) I'm just try'n to help.
I wish you the best, and make sure that you stay in contact with all of us while your in the hospital. You will be surprized how much support you will get from this group.
Also if your going to have a ostomy I can give you some detailed tips that will help alot. The training they give you in there is not that good. I have came up with some really creative things that even the Dr. and nurses WOW over. They help alot.
Good luck, and may God bless and protect you.
Jim
Pops
Thankyou so much for all your advice yes I am having a resection my 1st ever surgery and my first ever anasetic! my mum is coming with me I'm glad to hear she will be able to stay with me a while. I go into hospital at 8am the Sunday when do they usually do the operation will I have to wait until afternoon? good idea about asking for something to calm me down I think I will need it! I am having it done lapriscopic so I'm hoping the scarring will be minimal and recovery time quick as I go on holiday mid June and a bit worried I won't be fully fit in time I will be so relieved when it's all over x x
Thankyou so much for all your advice yes I am having a resection my 1st ever surgery and my first ever anasetic! my mum is coming with me I'm glad to hear she will be able to stay with me a while. I go into hospital at 8am the Sunday when do they usually do the operation will I have to wait until afternoon? good idea about asking for something to calm me down I think I will need it! I am having it done lapriscopic so I'm hoping the scarring will be minimal and recovery time quick as I go on holiday mid June and a bit worried I won't be fully fit in time I will be so relieved when it's all over
x x
Jim (POPS)
Jim (Pops)
Kimmy86, You should be good to go for vacation if there is no complacations, and I'll pray for you that there is not. Like I said before, keep a possative mind, think of it as going somewhere you like to go insteed of the hospital. After all, you are going to make your life better. Before you go, try and learn everything you can about crohn's, and I meen that, it's a must that you know as much as you can find out, yes, the GOOD and the bad. I will help your recovery more than you know, from someone that DID NOT do that, I REALLY wish that I would have listen to my GI Dr. and took the time to do so. It is time well spent, after al crohn's is for life, there is no cure, but with the knowlage you learn it will help you manage crohn's for life. After the surgery somethings will happen that you didn't go over with your Dr. and if you looked into things before, chances are you will understand and not feek-out.
Keep us up to date, we ALL really care. :dance:
Pops.
Keep us up to date, we ALL really care. :dance:
Pops.
- Joined
- Apr 19, 2012
- Messages
- 12
Hi everyone,
This is my first post on this forum too. I'm in basically the same situation... I am having my first surgery, a partial bowel resection, in two weeks and was feeling fine about it until the hospital called me today and said I have to come in for an appointment to find out about what happens if i need a bag. I'm really really upset now and worried. I was diagnosed in 2009 and am actually in remission except have a very small area of stricture causing lots of symptoms. This surgery has been fast forwarded because I'm supposed to be going volunteering in Africa in October and my GI won't let me go unless I get this done, in case I get an obstruction over there. I am really rethinking this now.... I've lived with these symptoms for a long time now... but I'm worried once I do this I will just have to keep having them and regret it. If you had something similar, how long was the recovery time? And do you think the results made it worth it? I'm only 21 and it's hard because I don't know anyone with crohn's or colitis so I don't really have anyone to talk to!!
This is my first post on this forum too. I'm in basically the same situation... I am having my first surgery, a partial bowel resection, in two weeks and was feeling fine about it until the hospital called me today and said I have to come in for an appointment to find out about what happens if i need a bag. I'm really really upset now and worried. I was diagnosed in 2009 and am actually in remission except have a very small area of stricture causing lots of symptoms. This surgery has been fast forwarded because I'm supposed to be going volunteering in Africa in October and my GI won't let me go unless I get this done, in case I get an obstruction over there. I am really rethinking this now.... I've lived with these symptoms for a long time now... but I'm worried once I do this I will just have to keep having them and regret it. If you had something similar, how long was the recovery time? And do you think the results made it worth it? I'm only 21 and it's hard because I don't know anyone with crohn's or colitis so I don't really have anyone to talk to!!
- Joined
- Dec 29, 2011
- Messages
- 23
Hi Grugsley,
I am only into day 10 of my recovery, but each day gets slightly easier. I hope that once recovery is all done, the op will be worth it. I totally understand where you are right now, my biggest fear was waking up, and feeling a bag on me, but I needn't have feared anything, it all went very well. I know it was worth it, my surgeon said the part of my I testiness he removed, was a big ball of scar tissue, and he was shocked I had managed to live with it the last few months.
Good luck buddy.
J
I am only into day 10 of my recovery, but each day gets slightly easier. I hope that once recovery is all done, the op will be worth it. I totally understand where you are right now, my biggest fear was waking up, and feeling a bag on me, but I needn't have feared anything, it all went very well. I know it was worth it, my surgeon said the part of my I testiness he removed, was a big ball of scar tissue, and he was shocked I had managed to live with it the last few months.
Good luck buddy.
J
Jim (POPS)
Jim (Pops)
Hay Grugsley,
If you have to have a bag, well you have to. I got one after I went septic 8 days after my first resection and I've had it for 5 months now. They are planing on a reconectiong me this late summer. I can tell you 2 things about a Bag on you side, #1 you will feel WONDERFULL after your recovery , you will be able to eat as much and anything you want. Thats the good thing, #2 yes, sometimes I hate this bag, the burning sometimes when you don't get it on wright. Changing it every 2-5 days. But, I have to say. Live is much better. If you have lost lbs like I did (over 35lbs.) you will put them back on for sure, fast. If you were reducing your intack of food because you heart when you ate or somethings trigered flairs, that will be GONE with the bag. I had a hard recovery because I'm 61 years old, my wound is still healing and it was 5 months ago, but that was because I went septic and had a 2fer, 2 operations for the cost of 1. LOL
And like you. I was going to go over Seas as a Band manager and tour for about 5 months but couldn't go unless I had the operation. Man I wanted to go. I use to own a Sound Co and Booking Co for Bands and would go on tour all the time. I stopped going on stage in 1988 after a very good go at it for many year. I was 38 when I stopped performing.
In a nutshell. You have to think about your health. If they are doing a resection because of obstrutures they will use the bag only for a short time for your inside to heal. Don't jump the gun and think it is perminet, and even if it is I have a very GOOD story to tell you. MY wife has had a ostomy for years and has been healthy for all those years. It's not the end of the world. Think of it this way,(from a od man) there is ALWAYS someone out there that has it much worse than you. Thats for sure. I know a few guitar players that have ostomy bags and has had them for years and they live a great life. One you would probly know, he is 27 and with a band that plays all over the world. I wish I could tell you his name, but, it could heart his rep. we have had a talk after I got my ostomy for him to come out about his but he is still thinking about it. His band is one of the top 20 in the world, so you can understand why he is still thinking. Hell, he don't need anymore money, I think he still wants to ride the train for a few more years, before he tells his story, he has crohns and through me he understands what he can do to bring more help to help the reserch and what not
Hay man, eather way, you will fell better and lets face it. The most important things in life is, Family, love ones, God and your health, not in that order. but those are the things that count.
Please keep me up dated, I'd like to follow your story and enjoy your new, much better life.
Pops:emot-waycool:
If you have to have a bag, well you have to. I got one after I went septic 8 days after my first resection and I've had it for 5 months now. They are planing on a reconectiong me this late summer. I can tell you 2 things about a Bag on you side, #1 you will feel WONDERFULL after your recovery , you will be able to eat as much and anything you want. Thats the good thing, #2 yes, sometimes I hate this bag, the burning sometimes when you don't get it on wright. Changing it every 2-5 days. But, I have to say. Live is much better. If you have lost lbs like I did (over 35lbs.) you will put them back on for sure, fast. If you were reducing your intack of food because you heart when you ate or somethings trigered flairs, that will be GONE with the bag. I had a hard recovery because I'm 61 years old, my wound is still healing and it was 5 months ago, but that was because I went septic and had a 2fer, 2 operations for the cost of 1. LOL
And like you. I was going to go over Seas as a Band manager and tour for about 5 months but couldn't go unless I had the operation. Man I wanted to go. I use to own a Sound Co and Booking Co for Bands and would go on tour all the time. I stopped going on stage in 1988 after a very good go at it for many year. I was 38 when I stopped performing.
In a nutshell. You have to think about your health. If they are doing a resection because of obstrutures they will use the bag only for a short time for your inside to heal. Don't jump the gun and think it is perminet, and even if it is I have a very GOOD story to tell you. MY wife has had a ostomy for years and has been healthy for all those years. It's not the end of the world. Think of it this way,(from a od man) there is ALWAYS someone out there that has it much worse than you. Thats for sure. I know a few guitar players that have ostomy bags and has had them for years and they live a great life. One you would probly know, he is 27 and with a band that plays all over the world. I wish I could tell you his name, but, it could heart his rep. we have had a talk after I got my ostomy for him to come out about his but he is still thinking about it. His band is one of the top 20 in the world, so you can understand why he is still thinking. Hell, he don't need anymore money, I think he still wants to ride the train for a few more years, before he tells his story, he has crohns and through me he understands what he can do to bring more help to help the reserch and what not
Hay man, eather way, you will fell better and lets face it. The most important things in life is, Family, love ones, God and your health, not in that order. but those are the things that count.
Please keep me up dated, I'd like to follow your story and enjoy your new, much better life.
Pops:emot-waycool:
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- Joined
- Apr 19, 2012
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Hi guys!
So i posted a couple of weeks ago, mainly voicing concerns about my surgery. So I thought I would follow up today as I just got released home. I had my surgery last wednesday night, and it all went really well. No bag and they managed to do it laprascopically so i only have four smallish wounds. Like I said earlier, I'm 21 and never had any surgery before and don't have any friends or family with IBD so I was very very anxious about the op itself. When they wheeled me into theatre I really started freaking out so they gave me something to relax calling it "vodka cruiser" haha and then the next thing I was waking up in recovery feeling if I had a bag which i didn't!!!
Everything has been going well, except I still haven't had a bowel movement yet, so it's been 8 days since I last had one and I'm kind of a bit worried, is this normal or did anyone else wait this long or longer? Also they released me and said to eat low residue diet, and I ate some soft pasta last night and got violently ill afterwards so back on the clear fluids again.... I'm just wondering if this is all normal because I hope nothing is going wrong and I should go back to hospital? I don't have pain much except for muscle pain now from vomiting and can move around pretty well. I'm passing wind (how fun) so I think that's good, or maybe I'm just being young and impatient!
So i posted a couple of weeks ago, mainly voicing concerns about my surgery. So I thought I would follow up today as I just got released home. I had my surgery last wednesday night, and it all went really well. No bag and they managed to do it laprascopically so i only have four smallish wounds. Like I said earlier, I'm 21 and never had any surgery before and don't have any friends or family with IBD so I was very very anxious about the op itself. When they wheeled me into theatre I really started freaking out so they gave me something to relax calling it "vodka cruiser" haha and then the next thing I was waking up in recovery feeling if I had a bag which i didn't!!!
Everything has been going well, except I still haven't had a bowel movement yet, so it's been 8 days since I last had one and I'm kind of a bit worried, is this normal or did anyone else wait this long or longer? Also they released me and said to eat low residue diet, and I ate some soft pasta last night and got violently ill afterwards so back on the clear fluids again.... I'm just wondering if this is all normal because I hope nothing is going wrong and I should go back to hospital? I don't have pain much except for muscle pain now from vomiting and can move around pretty well. I'm passing wind (how fun) so I think that's good, or maybe I'm just being young and impatient!
Hi Grugsley,
I just saw your last post. How are you doing? Hope everything is ok. I would have been nervous when one of the first things I ate made me ill and I still hadn't had a bowel movement. Were you at least able to pass gas before you were released? I went six or seven days without a bowel movement and I started eating some 'solids' five days post op; started with white bread with some butter and then peanut butter. So, it took a little while for everything to move through, but it never made me ill.
Hope things are going better,
Heather
I just saw your last post. How are you doing? Hope everything is ok. I would have been nervous when one of the first things I ate made me ill and I still hadn't had a bowel movement. Were you at least able to pass gas before you were released? I went six or seven days without a bowel movement and I started eating some 'solids' five days post op; started with white bread with some butter and then peanut butter. So, it took a little while for everything to move through, but it never made me ill.
Hope things are going better,
Heather
- Joined
- Jun 11, 2012
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- 5
Hi all,
I'm so glad to have found this site as it sounds like you have all been through what I'm about to have! I'm due to have a resection of the terminal ileum- I'm nervous about the whole thing and the idea of having a bag freaks me out too but its true its temporary so have to keep positive. I'm really looking for advice as to whether to go for the epidural or have the morphine? Its all so confusing as everyone seems to have a different opinion. If anyone can shed any light i would be so grateful.
Thanks!
Camila
I'm so glad to have found this site as it sounds like you have all been through what I'm about to have! I'm due to have a resection of the terminal ileum- I'm nervous about the whole thing and the idea of having a bag freaks me out too but its true its temporary so have to keep positive. I'm really looking for advice as to whether to go for the epidural or have the morphine? Its all so confusing as everyone seems to have a different opinion. If anyone can shed any light i would be so grateful.
Thanks!
Camila
- Joined
- Jun 11, 2012
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- 5
Hi Kate try not to fret I had an ileocecal resection (without needing a bag)in 2010 and had all the same concerned as you. I had 1ft damaged bowel at term al ileum rest of the bowel seemed good my surgeon said chances of needing a bag were very slim (4%) and would really only be required if there was a leak at the join post op or if the bowel needed time to heal and at that it would be temporary. He, although extremely lovely was not sympathetic when I said I didn't want a bag he just replied who does if your in a position to need one you'll not complain. If ur bf has been supportive so far (as you would expect) he more than likely will be supportive if you need a bag. I had the same concern about my husband but he just joked and said if I needed a bag I'll prob request a designer one!! Good luck it's a very confusing time but I wouldn't look back now I've had a great outcome with surgery and if you want any advice just ask
Hi Archie,
I'm having surgery in the next couple of weeks i just posted smthg. On another note, I noticed your not on any medication was that your or your doctors choice? How are you doing without drugs? My docs i think want to put me on azathioprine..which Im a bit reluctant too but if I must I will!
Thanks, Camila
Hi Camila. Welcome to the forum!! I personally would recommend the morphine IV. From what I have read on this forum and my co-worker who had an epidural, the recovery time seems to be longer. I had a button I could push every 7 minutes that did what I needed and I was able to get up and walk the next morning. If you have an epidural it takes longer to be able to get up and move around and I believe can make some people feel more nauseous (I never felt nauseous during recovery). The faster you can start to move; generally the faster you start to recover. My surgeon told me to not rely too heavily on pain meds and to get up and walk as much as possible. I will say though, the morphine can make you itchy. I was so itchy the first day because I used it the most on that day. Every day I used it a bit less and was completely off pain meds 4 days post-op. The nurses would have given me a shot of Percocet if I had wanted/needed it, but I didn't feel as though I did. It has worked out really well for me. I will be 12 weeks post-op on Thursday and I started the Insanity 60 day total body routine last Monday! Everyone recovers at their own pace, but just stay positive as I found that was a huge help! Good luck and know that there is always someone on the forum to talk to! Take care, Heather
Hi Kate just wanted to say good look Im 25 and have my 1st resection coming up in the next few weeks as well I am so scared! I 2 have the same concerns about a bag also I am really worried about the possibility of an epidural 4 pain relief afterwards! from experience does anyone have any advice on wether an epidural or morphine is best? I hate the thought of an epidural
Hi , ive just had a small bowel resection and i had to have the epidural before i went under so when i woke up i wasnt in so much pain, i had morphine as well so you may have to have both. Honestly it didnt hurt as much as i thought it would , it was weird when i came round because i couldnt feel anything but it had worn off after about 9 hours. I had my operation on the 31st of May and in recovery now although i dont seem to have lost any weight. I had a 70% chance id need a temporary bag and i came out without one so it will just depend on what it looks like inside. I had around 10 inches of my small bowel removed. Hope this helps
(oh by the way i went in on Thursday and was out by Sunday afternoon ) xx- Joined
- Jun 11, 2012
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Thanks Heather, really appreciate the advice! Are you on any medication now?
Hi Camila it was a joint decision between my surgeon, my GI and myself, they knew I was very reluctant to take meds pre and post surgery although they also knew I would've taken them if required, so they adopted the wait and see approach and so far so good all tests since resection have been normal except mild inflammation / few ulcers on colonoscopy but no active crohns. I did take pentasa and pred pre surgery but I failed to respond to meds therefore I required surgery.
I do undersatnd though that I only had a very quick onset of crohns which led to a stricture which due to abscess and perforation required surgery. I didn't have symptoms for years before hand so I think I had a mild type of crohns compared to some people so it's hard to advise someone not to take meds as your situation might be different. Due to having private health I have the luxury of getting investigations when and if required without waiting so I know I'm in a fortunate situation.
On another note I wouldn't recommend the epidural for the surgery as I had one and TBH it gave me more pain than the surgery site and the actual surgery site didn't seem to be painful enough to need it but thats just a personal choice, good luck
Hi Camila,
Yes, my GI started me on Apriso after the surgery. We are hoping that being on a maintenance med will keep me in remission longer. I guess only time will tell, but so far everything has been going really well.
Heather
Jim (POPS)
Jim (Pops)
Camilla, I had a resection about 7 months ago, my recovery was long because I was so ill before the operation, they didn't know I had crohns, they thought it was my apendix, but they found crohns insteed. If I were you I would not go with the epadueral, my wife did and got spinal menenjidis from it. The IV pain meds are the way to go, you will only need them for 3-4 days and if you leave the hospital with pain pills, PLEASE ONLY use them "AS NEEDED" and only for a short time, maybe 3-5 day. If you do that you will not have any withdraw problums but if you use them for more than that you may. Be very carefull, only use the pain meds after you get out of the hospital if you really need to. And about the bag. I have one but they will be takng it down (Away) in a month. Don't worry if you do have one for a while, it's not all that bad, you will do just fine. Try to use as little of the pain meds in the hospital, you will have a button to push if you need it, don't go crazzzzzzzzzzzy, and after, AS NEEDED ONLY. Good luck and bring you laptop to the hospital and you will get alt of support from ALL of use while you are in there. Hope to hear from you soon.
Pops.
Pops.
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- Jun 11, 2012
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- 5
Thank you Heather, Jim and Archie for your advice- has really helped ) Wish I'd joined this forum ages ago!!
) Wish I'd joined this forum ages ago!!
My surgeon also recommended rotating pain meds if you need them at home. Narcotic (whatever they prescribe), Tylenol, Advil, etc... That way you are less likely to suffer from the ill effects of any of them. I didn't end up needing them, but that was his recommendation.
I had a laparoscopic ileocolic resection six months ago and I am going in for a follow scope on Thursday. The surgery was the best thing to happen to me. The recovery was quick (back to my desk job a week later) and I have had no pain or bowel issues except for a bial salt issue that was resolved with a script. Doctor said I have a 30% of Crohn's coming back this early, so fingers crossed for the scope this Thursday.
@Adam I see you have a surgery lined up in December. I too was on Humira before and have been off since the surgery six months ago. There is the normal pain and discomfort of surgery but it really has been great as I said above. Based on the recommendation of my doctor, I had put the surgery off for a few months to see if the Humira would help, but I ended up being hospitalized 3 times in 3 months for blockages. I was literally getting one once a week and it was miserable. Next time the blockages start, I am getting the surgery sooner.
Good luck and don't sweat it!
- Joined
- Mar 27, 2012
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- 244
Thanks for info! I am not sweating it too much. I have not had blockages that sent me to the er, but just constant "partial" blockage symptoms. The surgeon did not need convincing, in fact, he thought the time was right. So, I am ready. I am a little confused about meds post-op. If humira is keeping inflammation at bay, shouldn't I stay on it after the surgery? I've been wondering about this.
New poster here. First post. I've had crohn's for many years but control it with diet, no meds.
In a few weeks I will be having surgery to remove a massive cyst the size of a small watermelon, a total hysterectomy, necessary to get at the cyst, and another surgeon will be removing 6-8 inches of scarred, blocked small intestine at the ileum. They feel this should be done while I'm having the other surgery. So it will not be done by laproscopy, but I will be cut from my belly button down. And yes, I'm scared.
My question is how long will it take to heal. I'm a caregiver to our daughter, and the gynocologist has allready told me not to push her wheelchair, or change or lift her oxygen cylinders for at least 6 weeks, and I plan to follow the rules, but will I be better in 6 months? Will I feel good enough to take her on vacation?
In a few weeks I will be having surgery to remove a massive cyst the size of a small watermelon, a total hysterectomy, necessary to get at the cyst, and another surgeon will be removing 6-8 inches of scarred, blocked small intestine at the ileum. They feel this should be done while I'm having the other surgery. So it will not be done by laproscopy, but I will be cut from my belly button down. And yes, I'm scared.
My question is how long will it take to heal. I'm a caregiver to our daughter, and the gynocologist has allready told me not to push her wheelchair, or change or lift her oxygen cylinders for at least 6 weeks, and I plan to follow the rules, but will I be better in 6 months? Will I feel good enough to take her on vacation?
