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Crohn's Disease Forum » Surgery » What to expect after surgery


02-01-2015, 10:06 AM   #1
DJW
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What to expect after surgery

What to expect after abdominal surgery:

Day 0:
You wake up with a tube in your bladder (catheter), a tube down your nose into your stomach (NG Tube), and either a pain management pump or an epidural for pain control.
If you do not have a tube down your nose you may be allowed ice chips. The nurses may even have you up in a chair that evening.

*abdominal drains - you may wake up with one after surgery if your surgeon is worried about fluid collections or infection that might need draining, more likely if you've had an abscess. An abdominal drain is a tube fed through a small incision in your abdomen and will be attached to a bag where the fluid will drain by gravity. Usually removed when the drainage stops or drops below a certain rate. Used to reduce the chance of postoperative infection. Often removed early on after surgery, perhaps a few days.

*oxygen - you may have an oxygen mask or tube when you wake up to increase the saturation of oxygen in your blood. I've found the mask can be very uncomfortable and make your mouth extra dry (which it likely will be anyway after surgery) so ask if you're ready to switch to a tube instead.

*if you have a dry mouth ask for moist swabs if you aren't allowed ice chips or sips of water

*coughing and deep breathing exercise to clear your lungs and to prevent pneumonia - placing a pillow over your abdomen can help you comfortably apply gentle pressure as you cough and support the incision. You might be given an 'incentive spirometer' - a small plastic device that encourages you to breathe effectively. Read more here.

*having a pillow or rolled up towel to hold/press gently on your abdomen can help some people to move around too.

*types of incision closure - you may wake with stitches, staples, steri-strips and/or glue. If your incision is leaking inform the staff right away.

Day 1:
Nurses will get you out of bed and sitting in a chair. It’s important to start walking on day one. It helps with gas pain, helps with your breathing, and gets blood flowing to your legs.
Your NG Tube may be removed and you will be able have ice chips and clear fluids

Day 2:
Your catheter will probably be removed if things are going well.
Keep walking to speed your recovery.

Day 3:
If you've tolerated clear fluids you will be moved to a full fluid diet (soft food if you started full fluids on day two). If you’re tolerating liquids well you will be moved to oral pain meds and the pain pump or epidural will be removed.
Keep walking.
People doing really well may even be discharged. I've never been so lucky.

Day 4 – Day 7
Keep walking.
Staples are typically removed before discharge.
I’m usually discharged between day 5 and day 7.
These are just guidelines.
Your stay may be longer if you've undergone emergency surgery or had a lot of intestine removed.
You’re stay may be shorter if you had laparoscopic surgery.

*measures to reduce incidence of blood clots - wearing compression stockings in hospital and sometimes when you return home, perhaps for one month after surgery, anticoagulant injections (may also be continued when you return home), as much walking as you can manage or exercises in bed similar to those you do on a plane to reduce the chance of DVT - for example, 1) point your toes down then flex your toes to the ceiling, 2) circle each foot at the ankle, 3) bend each knee and slide your foot along the bed (more exercise here) Also this NHS patient leaflet.

After Discharge:

It is important to keep walking and drinking (at the very least)
Seek Medical Attention if:
Develop new pain, redness, or discharge from your surgical site
Experience increased abdominal pain, bloating, nausea, or vomiting
Develop a fever or chills

Bowel Function:
It will take a few weeks to return to normal. Drink plenty of fluids to prevent constipation and dehydration.

Ileostomy Surgery
Output will vary greatly in the first 2-3 months. It is very important to stay hydrated. You will get a food list of typically safe foods for your new ostomy. If you become bloated, nauseated, and in pain, seek medical attention immediately. It could be a sign of an obstruction.

It takes time to adjust to your new ileostomy (physically). In the first 3 months your stoma will change in size. Leaks are very common. You'll go through different appliance types. Stay in close contact with your stoma nurse. Your nurse will guide you through this time.

The psychological adjustment to an ileostomy can take a lot longer. There is a grieving process we all go through. That’s perfectly normal. Give yourself time. It may take weeks or many months. You’re not alone and you have many people here you can talk to who know what you're going through.

Many people find ileostomy surgery a new lease on life. If you're nervous or completely freaked out, that’s alright, we've all been there. Hang in there, it gets BETTER!

More detailed info:
http://www.cpmc.org/learning/documen...-hospital.html
http://www.birminghambowelclinic.co....ments-surgery/
www.UHhospitals.org
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02-12-2015, 03:48 PM   #2
Jennifer
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This sticky is a basic guideline only. Always talk to your surgeon about what you should expect before and after surgery. Any posts after this should be for suggesting things to add to the guideline or any other helpful information in regards to abdominal surgery.


Always expect the unexpected as things may change once they get in there. For me I woke up without a catheter even though I was told I would have one but that was 15 years ago and I know I would have preferred to have one then be without. It was the worst pain I've ever felt trying to get up to use the bathroom hours after surgery.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
02-15-2015, 09:44 AM   #3
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Could you provide a link to a more specific source? The UH link goes to a very general website; I tried a few further links on the menu there, but couldn't find any details about abdominal surgery. Thank you.
02-15-2015, 10:28 AM   #4
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It is interesting to know that there is a grieving process with loss of organs
It was very upsetting to me to lose half a colon and I could not understand why
It was diseased ,no possible cure other than surgery but I was still asking the GI and the surgeons if they could do lesser surgery
Whilst being grateful it took over six months to get over the loss and even now sometimes
I get a pang of regret
Then I consider how very fortunate we are to have such competent fellow human beings
Helping to restore our health and physical mechanisms.
Very gifted and dedicated professionals
Trysha
02-16-2015, 02:23 AM   #5
Jennifer
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Could you provide a link to a more specific source? The UH link goes to a very general website; I tried a few further links on the menu there, but couldn't find any details about abdominal surgery. Thank you.
I added a link to the first post that goes over the very basics of abdominal surgery.
02-25-2015, 11:04 PM   #6
The Real MC
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Not all hospital stays after abdominal surgery are typical of the OP. I was in the hospital for twelve days & didn't get the NG tube until day 6 due to a blockage.

Best thing I ever took along was my netbook - I could surf the net over wireless to pass the time.
03-01-2015, 04:13 AM   #7
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I've had around ten surgeries (I'm sorry, I literally have lost count!), ranging from laparoscopic day-surgery, to major emergency surgery, and thought it might help to add something which shows the differences between minor, moderate and major surgery.

Minor surgeries: a night or two in hospital, or same-day-surgery (though with a same-day-surgery, it's best to pack an overnight bag just in case). General anaesthetic usually causes malaise - a vague feeling of being unwell, the kind of hot and cold 'flu like feeling that comes with many illnesses. With minor surgery, this lasts a couple of days. In the UK, paracetamol seems to be the standard pain relief, but you might get something stronger, maybe even morphine if you're lucky. Getting up and walking should be no problem and it's unlikely that you'll be attached to any drips or tubes when you wake. Before you're discharged, you may be required to eat some food and pee in order to demonstrate all is in working order.

Moderate surgery: a few nights in hospital, and a few weeks to get over the pain and malaise. After moderate surgery, I've had oral opioids such as Oramorph, though I have had surgery with no opioids. Plus the NHS's favourite - paracetamol. I've never had an NG tube after surgery, and after moderate surgery I usually get told to eat right away after waking up, though from my observations on this forum, it seems many people don't begin eating until a day or two after surgery. You will probably be encouraged to walk within the first day or two - but "walk" means to the bedside chair, to the bathroom, etc. No hiking. You may or may not have a catheter or IV. Stoma surgeries, when no other complications are involved, should fall into the moderate surgery category.

Major surgery: a couple of weeks or longer in hospital. Six to eight weeks will be needed to recover, though some cases may take longer. You may well have TPN as bowel rest - a period in which you take no food orally while the bowel heals - may be needed. Over the course of several days, you should progress to eating pureed, soft food, then resume a normal diet. You will almost certainly have strong opioid painkillers, often via IV. Bed rest is usually needed for a couple of days at least. After I had major surgery and bed rest, I was only allowed to get out of bed with a physiotherapist there to assist at first. I found having a stoma made recovering from major surgery much easier; I don't know how you'd manage on bedrest without an ileostomy or colostomy - perhaps someone can enlighten me?

A couple of sites I found online if you want to read a bit more on abdominal surgery:

http://www.bupa.co.uk/health-informa.../bowel-surgery

http://www.birminghambowelclinic.co....ments-surgery/ (Menu on left side of page of different types of bowel surgery)
03-31-2015, 11:09 PM   #8
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Why does no one mention the pain? I thought I knew pain having crohn's especially having a bladder fistula for 8 months that VA doctors ignored even when I could barely walk. My GOD the pain when I woke up was unbearable and the epidural and iv drip didn't touch it. I was actually screaming for help and begging the nurse to help me. I couldn't talk and breathing hurt. I'm a very calm person and hated showing doctors my pain which is why they always rolled their eyes at me in the ER when I said I had a level 8 pain level until they would see my CT scan results. On day 3 they had me walk to a chair, which I thought was silly because it was only 5 steps away. What hell that simple task was. It felt as of all my organs were hanging out of my body like a horror film. My breathing immediately change and when I felt the relief of finally making it to the chair and sat down I ended up having an anxiety attack and had to be drugged to sleep. I just want to know why no one mentioned the pain. I've had surgeries before and remember the pain was mostly annoying but my ileostomy surgery was hell. I was in another dimension where time slowed to almost a complete stop. Now I have to get my reversal soon and no one talks about what pain that will bring. I was thankful for all the tubes and bag because I did not want to move. I stared at the ceiling for the better part of a week because even turning my head was a nightmare. If you have a high tolerance to pain meds like me I suggest talking to your doc about putting in orders for meds to help you sleep and meds for anxiety before surgery because getting them to do anything after surgery take forever because they only come by once a day. Since I was on remicade I spend a month in the hospital recovering with round the clock antibiotics and immediately got thrush. So additional things you may experience: exceptional pain, thrush and other side effects of antibiotics, insomnia, nurses coming in every two hours when your trying to sleep, getting sick really fast of the hospital smell (my husband brought a plugin), and after a week or two your back and hip may hurt worse than the surgery from laying in a terrible hospital bed.
04-01-2015, 07:19 AM   #9
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I've never had surgery pain that severe - and I've had major surgery with no pain meds, and I'm very tolertant to the effects of opiates, but with IV oxycodone and then oral morphine, I didn't find my last surgery that painful at all (though I do have major blanks in my memory of days both before and after that surgery). Thank you for bringing it up, as many people must have severe pain and/or inadequate pain relief after surgery. I have had pain that severe, but from post-surgical ileus, which I didn't mention as it's a complication that most abdominal surgeries don't involve. But maybe we should list some surgery complications? Without meaning to worry anyone because complications are not the norm, following surgeries, besides ileus and memory loss, I've had sepsis from a candida infection, bladder paralysis, an internal incision infection, an external inciscion infection, bed sores and hallucinations.
04-01-2015, 07:08 PM   #10
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I think ileus is a really good thing to talk about because there are things that can be done to reduce the likelihood of it happening.

POSTOPERATIVE ILEUS: a malfunction of intestinal motility after major intra-or extra-abdominal surgery

Basically it's when your bowel doesn't start working again after surgery.

I've met patients on the gastro ward who have experienced this after surgery - one patient was in hospital for months on TPN until her bowel resumed working so it's definitely good to avoid it if you can.

Apparently the incidence varies with procedure "ranging from 4.1% for abdominal hysterectomy to 14.9% for large-bowel resection and 19.2% for small-bowel resection" (Source)

One of the major reasons that you are asked to get up and moving as soon as possible after surgery is to help your bowel to begin functioning again.

So even though it might be the last thing you feel like doing those early few steps to the chair or bathroom and walks along the corridor are really important and might save you from a long hospital stay.

Also after my last surgery my doctor told me to chew sugar free gum as soon as I was able to - I believe this was the day after surgery - as this stimulates bowel motility. Some studies here, here and here.
04-02-2015, 05:46 AM   #11
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I've met patients on the gastro ward who have experienced this after surgery - one patient was in hospital for months on TPN until her bowel resumed working so it's definitely good to avoid it if you can.
Just to avoid worrying anyone told they have post-surgical ileus unecessarily, it usually resolves in a matter of days.
04-02-2015, 10:27 AM   #12
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Yeah, I wasn't trying to worry anyone but ileus is a real risk and it can be worse than the case I described so it's just about playing your part as much as you are able to reduce the chances of it happening and I think, since it can feel so difficult to get up and walk after surgery it's important to know just what you might be avoiding by doing that.
04-02-2015, 04:20 PM   #13
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I think this is a really great idea for a sticky post but (and I mean no offense at all to anyone who's contributed so far) I think we have quite a lot more work to do on it and will need input from quite a few people to make it more comprehensive and relevant so that we aren't overly influenced by our own specialist areas of knowledge i.e. our own surgical experiences!

Some things to add:

*abdominal drains - you may wake up with one after surgery if your surgeon is worried about fluid collections or infection that might need draining, more likely if you've had an abscess. An abdominal drain is a tube fed through a small incision in your abdomen and will be attached to a bag where the fluid will drain by gravity. Usually removed when the drainage stops or drops below a certain rate. Used to reduce the chance of postoperative infection. Often removed early on after surgery, perhaps a few days.

*types of incision closure - I've had subcutaneous stitches or glue for laparatomy

*measures to reduce incidence of blood clots - wearing compression stockings in hospital and sometimes when you return home, perhaps for one month after surgery, anticoagulant injections (may also be continued when you return home), as much walking as you can manage or exercises in bed similar to those you do on a plane to reduce the chance of DVT - for example, 1) point your toes down then flex your toes to the ceiling, 2) circle each foot at the ankle, 3) bend each knee and slide your foot along the bed (more exercise here) Also this NHS patient leaflet

*oxygen - you may have an oxygen mask or tube when you wake up to increase the saturation of oxygen in your blood. I've found the mask can be very uncomfortable and make your mouth extra dry (which it likely will be anyway after surgery) so ask if you're ready to switch to a tube instead.

*if you have a dry mouth ask for moist swabs if you aren't allowed ice chips or sips of water

*coughing and deep breathing exercise to clear your lungs and to prevent pneumonia - placing a pillow over your abdomen can help you comfortably apply gentle pressure as you cough and support the incision. You might be given an 'incentive spirometer' - a small plastic device that encourages you to breathe effectively. Read more here.

*having a pillow or rolled up towel to hold/press gently on your abdomen can help some people to move around too
04-02-2015, 10:23 PM   #14
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All good points and I'll edit all of that into the first post. As for possible complications after surgery it might be best to have a separate thread/sticky with everything listed in detail and then we can share the link to it in the first post. We don't want this to be too long where people won't read it and we also don't want to frighten people. If anyone is willing to get it started that would be great, if not then I'll see what I can put together.
04-11-2015, 05:41 PM   #15
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I had a left hemicolectomy (about 20 cm removed including the descending colon, a quarter to a third of the transverse colon and a part of the sigmoid colon) by open surgery.

Day 0 Surgery Day – Ended up with a urinary catheter in, and a PCA pump (I chose this over the epidural). I spent the rest of the day in bed on the surgical floor. I was on oxygen which was removed the day after surgery. I also got a daily shot of heparin to help prevent blood clots.

Day 1 – Not much change. They got me up to do a lap around the unit in the evening – I felt nauseous and was in a cold sweat by the time I reached the halfway mark. That night although I had ear plugs I did not sleep well – come to find out I wasn’t pushing the PCA button enough. I could push it every 6 minutes for Dilaudid. Looking back I should have asked for something to help me sleep also.

Day 2 – More walking and sitting up in a chair. They gave me something in the IV to combat the itchiness from the Dilaudid. I started on clear liquids at the evening meal.

Day 3 – The urinary catheter was removed and I sat up in the chair for a fair bit in the morning and was up and moving around more as well. . I started on full liquids at the evening meal. I still didn’t feel all that great, this was the day that I really started coughing to clear my lungs. I had a fever of 38 C in the afternoon, but it passed.

Day 4 – They removed the PCA in the morning and switched to oral pain meds Tylenol – 975 mg every 4 hours). The surgical “dressing” came off but the strip of tape and steri strips under this remained on. There weren’t any stitches or staples to remove. It appears they sewed the incision to just below the skin and then used glue and steri strips. Started a solid diet (low fibre) at lunch time (noon). Began to pass more gas.

Day 5 - Noticed I had heartburn / indigestion.

Day 6 – Released in the afternoon. Appetite was not that great.

Day 7 / 8 – Still had heartburn when I was at home, On the 7th evening I also had pain right under the centre of the rib cage. I took one of the 2mg Dilauid tablets that I was prescribed when I was released and two hours later I was still in pain. About midnight I called the telecare number and was advised to go to the ER. Did not have to wait in the ER and had an abdominal x-ray and received prevacid and buscopan. The surgical resident came around at about 5AM and then I started to get some heavier pain meds – Fentanyl (which did not work) and Dilaudid which did. About 6AM they gave me an NG tube and admitted me. The on-call surgeon came in as I was being wheeled upstairs and chatted about the x-ray and said that I was booked for a CT scan for a closer look. There was a pocket of air on the x-ray that they were concerned with as a possible anastomotic leak (although there was no fever and the bloods were fine). I had the CTscan at 9:30 and the anastomosis looked fine, but there was distension in the small intestine that indicated a likely obstruction. I spent the rest of the day in the plastic/surgical short stay unit getting shots of Dilaudid every few hours.

Day 9 – More Dilaudid. I was moved back to the surgical unit about 6 that evening to the same room and same bed that I was in before I was released. The patients that were in the room when I was released were surprised to see me back.

Day 10 - Started to pass gas.

Day 11 –The NG Tube was taken off suction in the morning and I started on a clear liquid diet at noon.

Day 12 – The NG tube and the IV were taken out and things started to move again. The diet was bumped up to a full liquid diet.

Day 13 - Started on a solid (low fibre) diet. Had some pain at night so they gave me a tablet of Dilaudid. There was some diarrhea as well so they were watching that to make sure it wasn't C diff or some form of hospital acquired gastro bug. I was really tired that evening.

Day 14 – Walked around a bit more and the appetite really started to come back.

Day 15 – Released from hospital in the morning.

In terms of pain the pain after surgery was less than I expected and less than dealing with the stricture before surgery.

I had some constipation after the second time I came home, and expect it was a combination of being on a low fibre diet (10 grams of fibre/day max.) and the Tylenol I was taking. I was taking Tylenol about 4 times a day for a few weeks after surgery and was on a low fibre diet until I had a follow up with the surgeon 8 weeks after surgery.

I was off work for 8 weeks – there was no discussion on this – the surgeon kept me out, and it was 5 weeks before I began to drive. I could not lift anything heavier than 10 pounds for 4 weeks after surgery.

I started walking a bit every day the second week after I came home and found that I needed an afternoon nap for a few weeks after the surgery.

The thread below also provides some good information on what to expect -
http://www.crohnsforum.com/showthread.php?t=30212
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Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
05-03-2015, 08:02 AM   #16
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All good points and I'll edit all of that into the first post. As for possible complications after surgery it might be best to have a separate thread/sticky with everything listed in detail and then we can share the link to it in the first post. We don't want this to be too long where people won't read it and we also don't want to frighten people. If anyone is willing to get it started that would be great, if not then I'll see what I can put together.
I wrote a guide to two complications if you want to use them:


Possible complications of abdominal surgeries

Post-surgical ileus

Ileus is paralysis of the digestive system. This is similar to a blockage, as nothing can pass through the intestine. However, while a regular blockage involves something physically obstructing the passage, with ileus the digestive nothing moves through despite the intestine being clear. One cause of ileus is surgery, as it can be triggered by the surgeon handling the bowel. (It is not the fault of the surgeon though, no one knows why surgery triggers it on some occasions but not on others.) The main symptoms are abdominal pain, vomitting bile, and lack of bowel movements. X rays can reveal dilated intestines. Aspiration of stomach contents via an NG tube helps to relieve symptoms. A patient with ileus will be advised not to eat or to eat very little. IV fluids may be necessary to avoid dehydration if vomiting is severe, and TPN may be needed if the ileus persists for a long time (several days) and/or the patient is underweight. Patients may be advised to chew gum, as chewing gum helps stimulate the digestive system without burdening it with food. Ileus usually resolves on its own over several days. The patient will need to remain in hospital until it has resolved.

Incision infection

The incision - the place where the surgeon cut into the abdomen - can become infected before it heals. This can occur with both open and laparoscopic (keyhole) surgery. Signs of an infected inscision include redness of the skin, itching, pus oozing from the incision, and the area may feel hard, warm or tender when touched. If left untreated, the patient may develop a fever and the infection can spread. With prompt treatment, incision infections should not be serious. Antibiotics are used to treat infection, so patients should tell a doctor if any signs of infection occur. If infection occurs once the patient has been discharged from hospital, they should see a GP. If there are no complications, a specialist will not be needed and the patient should not need to be readmitted to hospital. The incision should be kept clean and any dressings should be changed regularly. Patients may be told how to change the dressings themselves or they may be instructed to visit their GP or practice nurse. (This applies in the UK. The healthcare system and roles of GPs, nurses, etc. may differ elsewhere.) Keeping the incision clean will help prevent infections developing in the first place: patients should wash their hands before and after touching the incision. If prescribed antibiotics, patients should continue to take them until the course is completed, even if all signs of infection have cleared earlier. This prevents the development of resistance to antibiotics.

I'm not a medical professional, I'm just someone who has had a lot of surgeries. I may have got things wrong.
07-06-2015, 12:38 PM   #17
ladysybil
 
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Why does no one mention the pain? I thought I knew pain having crohn's especially having a bladder fistula for 8 months that VA doctors ignored even when I could barely walk. My GOD the pain when I woke up was unbearable and the epidural and iv drip didn't touch it. I was actually screaming for help and begging the nurse to help me. I couldn't talk and breathing hurt. I'm a very calm person and hated showing doctors my pain which is why they always rolled their eyes at me in the ER when I said I had a level 8 pain level until they would see my CT scan results. On day 3 they had me walk to a chair, which I thought was silly because it was only 5 steps away. What hell that simple task was. It felt as of all my organs were hanging out of my body like a horror film. My breathing immediately change and when I felt the relief of finally making it to the chair and sat down I ended up having an anxiety attack and had to be drugged to sleep. I just want to know why no one mentioned the pain. I've had surgeries before and remember the pain was mostly annoying but my ileostomy surgery was hell. I was in another dimension where time slowed to almost a complete stop. Now I have to get my reversal soon and no one talks about what pain that will bring. I was thankful for all the tubes and bag because I did not want to move. I stared at the ceiling for the better part of a week because even turning my head was a nightmare. If you have a high tolerance to pain meds like me I suggest talking to your doc about putting in orders for meds to help you sleep and meds for anxiety before surgery because getting them to do anything after surgery take forever because they only come by once a day. Since I was on remicade I spend a month in the hospital recovering with round the clock antibiotics and immediately got thrush. So additional things you may experience: exceptional pain, thrush and other side effects of antibiotics, insomnia, nurses coming in every two hours when your trying to sleep, getting sick really fast of the hospital smell (my husband brought a plugin), and after a week or two your back and hip may hurt worse than the surgery from laying in a terrible hospital bed.
I was great after my resection when I had the epidural but when I was put on morphine I could feel everything and was violently sick (that hurt!). I was given tramadol and was ok. We all have very different reactions to pain drugs so worth keeping an open mind
07-16-2015, 02:57 PM   #18
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I was great after my resection when I had the epidural but when I was put on morphine I could feel everything and was violently sick (that hurt!). I was given tramadol and was ok. We all have very different reactions to pain drugs so worth keeping an open mind
You're right about different reactions, and surgeons will differ in the meds they prescribe in the first place, so people's experiences can vary greatly, but morphine and other opioids cause nausea for many people (though Tramadol is also an opioid that can cause nausea for some). I've been wondering whether that is still the case if they're given by IV.
08-16-2015, 01:14 AM   #19
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Would you say the surgery is the worse case scenario? At first, I refused to ever have this...Being 13 and even considering having a bag...No way! How would you be intimate with someone? You would be so self conscious...Now at 30..I don't care. I want my life back. The life I never really got to have.

I'm still worried about how it will be afterwards. Do you guys still have flare ups with a bag? Can you eat whatever you want now? How are you out in public with the bag when you have to go to the bathroom? I have all these questions and worries.
08-16-2015, 06:14 PM   #20
DJW
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Unfortunately flair ups still happen.
Going to the washroom in public is pretty easy.
My diet hasn't been much of an issue. Raw vegetables are a no go for me. They don't digest and cause a blockage.

This surgery gave me my life back. I've always been active in sports and life.
Nerves are normal and it takes time to adjust.

P.s. I did have a 20 year remission.
08-16-2015, 07:18 PM   #21
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I don't mean to have this sound stupid or anything...but...If you still have flare ups what is the reason for the surgery then? Are the flare ups still painful? Bloody? often?
08-16-2015, 07:35 PM   #22
DJW
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Good questions.

I never responded to treatment. There was extensive damage. It needed to be removed.
Apart from a major bleed in hospital I never had bleeding.

My last flare started a few years ago. Major fatigue and lots of strictures, anemia, eye problems, join pain, etc.

Specific symptoms and how often is pretty specific to the individual.

I'm now on Remicade and imuran...hoping for a long remission.
08-16-2015, 08:48 PM   #23
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I was under the impression, if you get the surgery then you are Crohns or UC free. Hm. Well this has me rethinking that surgery then...I mean, if I need it then obviously I will but...Damn.
08-17-2015, 07:11 AM   #24
DJW
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Unfortunately not. Crohn's can hit anywhere from mouth to anus.
Surgery can put you into remission by removing the diseased section. So technically you are Crohn's free...but you are not cured.
It's a tough decision.
10-04-2015, 10:08 PM   #25
BigBoss
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I think it's misleading to say that surgery leaves you crohn's free. It is important to know that Crohn's disease is an autoimmune disease. Regardless of "remission" which is basically not having any symptoms of the disease, or keeping it "under control". You have Crohn's for life, not UC, but Crohn's is a liflong diesease. I am not an expert, but there are many reasons to have surgery. Most likely as stated above is that a person with severe symptons is not responding to any of the known treatments, and over time the constant inflammation can cause permanent damage to the digestive tract. Thus leading to all kinds of complications, as well there may already be such complications occuring from this lovely disease such as, strictures, fistulas, etc. Usually surgery is a last resort and is needed to help get the body back under control. It is usually the goal to remove all the diseased tissue, thus allowing the body to again begin to absorb nutrients, properly digest food, basically correct the problems that were occurring from the disease and said complications. After surgery, the idea is, now that the body is hopefully disease free, that medications or treatments can begin to help keep the disease in remission as long as possible. However, and this is not to scare you, but, once one does have surgery the chances of reoccurrence with a needed surgery go up, dont quote me, but something like 15-25% in first 5 yrs, 40% in 10 yrs, and like 85% within 20 yrs of surgery. I dont know where but the info is out there.
I myself just had a major surgery on 9/21/15 and was discharged on 9-30-15. I had 2ft of small intestine at the ileum back removed, severely diseased, 2 fistulas, one from the small intestine to the bladder with abscess, so fistula removal and repair of the bladder, then antother from the small intestine to the colon, which required fistula removal and repair of the colon. which meant i lost some colon and bladder... I was in desperate need, as I my body was malnourished due to above. For 5 yrs I was 110lbs from 155lbs when healthy. So, if you need the surgery, you need it. if you need it and dont get it, things can begin to manifest rather badly as this disease likes to bring a lot of shit along with it if left alone. Sorry for the long post but thought i would clarify and share a bit as well. Hope things go well for you.
10-04-2015, 10:08 PM   #26
BigBoss
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I think it's misleading to say that surgery leaves you crohn's free. It is important to know that Crohn's disease is an autoimmune disease. Regardless of "remission" which is basically not having any symptoms of the disease, or keeping it "under control". You have Crohn's for life, not UC, but Crohn's is a liflong diesease. I am not an expert, but there are many reasons to have surgery. Most likely as stated above is that a person with severe symptons is not responding to any of the known treatments, and over time the constant inflammation can cause permanent damage to the digestive tract. Thus leading to all kinds of complications, as well there may already be such complications occuring from this lovely disease such as, strictures, fistulas, etc. Usually surgery is a last resort and is needed to help get the body back under control. It is usually the goal to remove all the diseased tissue, thus allowing the body to again begin to absorb nutrients, properly digest food, basically correct the problems that were occurring from the disease and said complications. After surgery, the idea is, now that the body is hopefully disease free, that medications or treatments can begin to help keep the disease in remission as long as possible. However, and this is not to scare you, but, once one does have surgery the chances of reoccurrence with a needed surgery go up, dont quote me, but something like 15-25% in first 5 yrs, 40% in 10 yrs, and like 85% within 20 yrs of surgery. I dont know where but the info is out there.
I myself just had a major surgery on 9/21/15 and was discharged on 9-30-15. I had 2ft of small intestine at the ileum back removed, severely diseased, 2 fistulas, one from the small intestine to the bladder with abscess, so fistula removal and repair of the bladder, then antother from the small intestine to the colon, which required fistula removal and repair of the colon. which meant i lost some colon and bladder... I was in desperate need, as I my body was malnourished due to above. For 5 yrs I was 110lbs from 155lbs when healthy. So, if you need the surgery, you need it. if you need it and dont get it, things can begin to manifest rather badly as this disease likes to bring a lot of shit along with it if left alone. Sorry for the long post but thought i would clarify and share a bit as well. Hope things go well for you.
06-15-2016, 02:38 PM   #27
highlandsrock
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I thought that after surgery my digestive system would return to normal. Wrong! IBDRelief, a UK based website, asked if I would write about my experience. I thought it might help others so here is the link - BAM - My Story
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06-16-2016, 01:16 AM   #28
BigBoss
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No kidding. I thought i would feel better and with maintenance like humira or something similar i thought i would be able to achieve remission. Not for me. I have 4 new ulcers less than 6 months after my resection. And i wish i could turn off the stress like a light switch, but it just keeps coming. The anxiety, stress, life it all just keeps piling up.
I will have to take a look at your story.
My surgeon asked if i would speak to other patients who were uneasy about the surgery. Which really wasnt all that bad, just sucks that i am still not in remission and still in pain. Part of me is fearful i will always be in pain, and it scares me as I am too young to be dependant on pain meds for life, but also, i cant live like this always in pain and afraid of eating and using the restroom. Thats not living either.
06-16-2016, 09:51 AM   #29
ronroush7
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I hope they get you on the right mixture of medicines soon.
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