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Your Surgery Story

DustyKat

Super Moderator
I notice many people come here asking what to expect from surgery...recovery time, tips, outcomes etc. So I thought it might an idea if we have a thread that we direct enquiries to where they can read through the varying experiences people have had. If you have had surgery and have a few moments to spare it would be great if you could add your story here.

Thanks, :)
Dusty
 

DustyKat

Super Moderator
Just thought I would put down what my kids went through with their surgeries so that others may have some idea of what to expect:

Sarah:
had a right hemicolectomy 5 years ago and has been in remission since that time. Her surgery was an emergency, she was undiagnosed, and so was performed as an open procedure. This is an outline of her post op recovery...

Surgery day - She was in theatre for approx 4 hours. When she returned to recovery she had oxygen, two IV's, two drains, an NG tube and an IDC (urinary catheter). She was in ICU overnight. She asked to go back to the ward the next morning. I think the surgeon wanted her to stay another day but she couldn't get out fast enough! Oxygen therapy ceased.

Day 1 post op - Moved to the ward and spent the day on bedrest. IDC removed. NG tube on free drainage and morphine IV remained on PCA (patient controlled analgesia).

Day 2 post op - No change with drains and tubes. Physiotherapy commenced. Up out of bed and gentle ambulation commenced twice a day. Although Roo refused to use a pan so started walking to the toilet that day.
Started eating ice chips.

Day 3 post op - One IV removed and condensed IV morphine and fluids into one. NG tube removed. Increasing mobilisation. Ice chips.

Day 4 - Bowels open. Commenced on clear fluids. Mobilising.

Day 5 - Tolerated fluids from previous day and throughout this day so commenced on light diet at tea time. Both drains removed and IV removed. Oral analgesia and antibiotics commenced.

Day 6 - Discharged home.

I don't know if being paediatric made a difference but each day she was visted by the surgical team twice, the physiotherapist twice, the pain management team once and the dietician once.

Sarah was in very poor condition prior to surgery so I felt that she didn't truly recover for a number of months. I would say she was running on about 80% for the first few months and reached full recovery after about 6 months. She returned to school 3 weeks after the operation and has now been in remission for 5 1/2 years.

Matt:
had a right hemicolectomy in April. It was planned surgery that was required due to an existing fistula and abscess. He had a pigtail drain in for 3 months prior to surgery.

Surgery day - He was in theatre for about 4 hours and recovery for 2 hours. When he arrived back on the ward he had one IV that consisted of the PCA (patient controlled analgaesia) and other IV fluids for hydration and IV medication. He also had one wound drain, a urinary catheter and oxygen.

Day 1 post op - No change with IV's or tubes and drains. Started mobilising and about an hour sitting in the chair.

Day 2 post op - Still no change with the tubes and lines. Commenced on clear fluids and continued with gentle mobilisation.

Day 3 post op - Urinary catheter removed, still on clear fluids, mobilising well.

Day 4 post op - PCA removed and started on oral analgaesia, remains on clear fluids, started farting, only one IV now left.

Day 5 post op - Last IV removed, commenced on free fluids, bowels open.

Day 6 post op - Commenced of light diet.

Day 7 post op - Commenced on full diet, drain out.

Day 8 post op - Discharged!

Matt had no issues post op and I feel that the start of week 4 post op was the real turn around in his recovery. It was at this point that he really started to move freely and shades of his old self started to appear. His recovery has been much quicker than Sarah's. He returned to school 3 weeks after surgery, was allowed to drive short distances after 3 weeks and long distances after 6 weeks but he was driving longer distances at 5 weeks. Started soccer training at about 5 weeks as well. He is also in remission.

The life savers in hospital for them were...TV, mobile phone, iPod, laptop with DVD's, ear plugs, comfortable loose fitting pyjamas/clothes, footwear that is easy to slip on an off, like slippers, magazines/books and short visits from friends when they were up to it.

They have both been on maintenance meds (Imuran) following surgery.

Hope that helps,
Dusty. xxx
 
Oct 5th...admitted for a blockage
Oct 5th-Oct 7th...IV fluids, no food only liquid, occasional morphine
Oct.8th-11th...able to eat jello, broth, preparing for surgery on Oct 11th
Oct.11th...Surgery day...Lap bowel resect...about 15-18inches removed, some of small, some of large. Abscess found as well... IV fluids continue, PCA pump (difficulty with this, needing gravol and some kind of antihistamine as I discovered I am allergic)
Sitting up at bedside 12 hours after surgery, needed PCA for this.

Oct. 12th...Went for small walk...EXTREME swelling from retaining liquid. Abdomen swollen all the way down to upper thighs. Pressure on chest, feeling like I needed to burp all the time. Pain was manageable, only used PCA pump once that day. Began replacing PCA with tylonol. Drinking liquids.

Oct 13th...Added pottasium to IV's as my pottasium and blood pressure dropped to dangerous levels. PCA removed, I requested to be placed on a Tylonol with codeine. Could not tolerate morphine, and Tylonol was enough for me. Had some broth and jello. Tea and coffee. Tried to drink as much as possible, knowing that if I am able to tolerate it I would be taken off IV sooner and swelling would go down.

Oct 14th...Still feeling effects of low blood pressure. Nurses monitoring me closely. First BM (which was strictly blood) I FREAKED, but later learned that it is normal, and that only to worry if it was new blood. Passing gas and beginning to take small bites or crackers. Drinking a lot of liquid, nurses monitoring my input/output. Walking as much as I can.
Taken off potassium.

Oct. 15th...
Advised to eat a meal and see how I feel. I did just that and felt great. Surgeon removed me from IV's...Released that evening!
Urinated RIDICULOUS AMOUNTS that night. Woke up 20 lbs less then what I weighed going into the hospital. I was now about 75lbs, did not look well.

Oct16-20th ATE LIKE A PIG...Bm's are loose and moving 2-4 X/day and I am able to tolerate food well. Still on an antibiotic which is now given orally. Weight slowly coming back on, and energy is still very minimal.

I went back to work November 14th, energy was back to normal.

Depression was a MAJOR factor for me. I shut right down while in the hospital, and became incredibly resentful toward everyone else in the world. Felt very sorry for myself. I am still up and down with this, but handling a lot better.
 
Nov 2, 2011: Sigmoid colectomy (about 7cm of colon removed due to fistula to bladder, bladder repair). Had epidural for pain, occasional morphine when epidural wasn't enough. Woke up with 5 inch scar from belly button down, small scar from laparoscope above belly button, a JP tube (drainage tube, not the same thing as JPouch) on the right and a catheter . IV liquids only.

Nov 3: Began to pass some gas so they allowed me limited clear liquids. Still had epidural. Had some loose stools at the end of the day. I chewed gum as they said to in my pre-op orders.

Nov 4: Epidural taken out. Started on percocet with occasional morphine. Taken of of IV drip, but they left the IV in for morphine. By the end of the day, allowed all liquids (not just clear). Started walking with help.

Nov 5: On soft foods. Oral pain meds. Walking around the unit 3 times in the day on my own. By the end of the day I had some solid foods.

Nov 6: Solid foods. Catheter out, JP out. Discharged at end of day. Sent me home with a prescription for percocet. Took 1 every 4 hours.

I took 1 percocet every 4-6 hours for about 4 weeks, but would not take it during the night unless the pain woke me up. Went to 1/2 percocet for the 5th week then just tylenol every 4 hours for another 2 weeks. I had normal stools within a few days of surgery. I did take colace 2x per day because I didn't want to risk getting constipated. I didn't really need it once I got down to 1/2 a percocet as pain meds will stop me up.

As I write this I am 3 months out from surgery. I have had no pain since about 7 weeks after surgery except when I do too much. I tried to do yoga last week and I was in pain the next day. The surgeon said I probably pulled a stitch. I have been walking daily since my surgery, per Dr's orders. They tell you to walk and you HAVE TO. It helps to get things moving right. Take your pain meds about 30 minutes before you do and have someone go with you. Drink lots of water.
 
July 11: Hospitilized for blockage. Thought it was west nile, lol
Sept 11: Ordered a CT scan for myself, diagnosed Crohn's
Oct 11: Small bowel follow through, roids not working
Dec 7th 11: Surgery, removed 13.5 in small 4 in large.
Dec-Jan: Lost 50lbs muscle mass
2/27/11: Got about 20 back! Dont eat meat anymore, sushi, rice, other seafood.
 
Hi, Colitis for 8 yrs now .Diagnosed Sept 2003. Never a issue till I quit smoking and had some stress in my life In April 2011 I started having a flare and continued till I got admitted in the hospital on July 11th 2011. For a full week they kept me off food and tried different meds to no avail. July 20th i had a colonoscopy where the colon was perforated. It took about 3 hrs before it ruptured. Worst pain ever. Had emerg surgery and ended with no colon and even the appendix was removed . Ended up with a ostomy bag. Was going to start Remicade the next day. But really just wanted the bag.Just that the docs wanted me to try remicade . Wasnt too bad i knew my options. Sent me hm 1 week later , four days later my home nurse noticed swelling and sent me to the emerg which was yet another emergency surgery ,the pain was again unbelievable collapsed bowel and abcess. Those 2 surgeries alone wore me out , lost sooo much weight at 118 lbs. Im 5'9" .Looked bad. Fast forward to Feb 20th 2012...soo syked to get my reversal yay no more stoma and ostomy bag. 4 hr surgery ,seemed to go well. Came out of it with just IV liquids, morphine from needle as needed. Fragmin shots so as to not get clots and Prednisone from before and was being weened off slowely.For some reason the bowel wouldnt wake up so by next day (Tuesday) started getting too much gas and had to have the NG tube. That didnt feel well. Had that for 8 days then they thought it could be removed. Felt ok for 2 days before it got so bad with vomiting etc . Tube was inserted down my nose for 4 more days before the bowel would finally wake up 3 more days then they sent me home. Have been healing quicker than my last 2 ops. eating more food sooner. This last surgery seemed easier and i believe it was because i was healthier in every way. Mostly by weight though. I was 155 lbs (70.307 kg) before surgery and 141lbs (63.957 kg ). Its now 1mth and a week ,still a little sore near stoma site ,open wound still healing. Great appitite but still avoid fiber. and I hunch over a bit when walking. Hard on the abs.My BM's are about 4 -6 per day (too loose if you ask me). If i hadnt had the chance to have a reversal it still would have been all good. I would have been comfortable with that. And to Stickman7755, I really hope your family and friends dont hate you . Alot of people dont understand our illnesses and all that follows. I hope things will only get easier and better for you.:)
 
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My surgery was open emergency exploritory surgery. I was undiagnosed and septic. I will shorten this as much as possible.

August 16th, 2011 - I was admitted to the hospital. Had a CT scan to try and figure out what was going on.. things were only getting worse so they brought me back to pre-op - told me to hug and kiss my family since we weren't sure if I would make it. I was in surgery for a few hours, after surgery I was moved to ICU.I had my right ovary, right fallopian tube, cecum, appedix and part of my small intestine removed. I was on a ventillator, had 3 drains in my stomache, a cathater, approx 5 IV's in my hands/arms, a central line goin into my internal jugular(I J) vein in my neck and a tube going down my nose to my stomache ( I think it's call an NG ). I was on TPN, antiobiotics and fluids (and I'm sure there is some other stuff that I forgot)

On August 16th, I was still on the vent but I was communicating with my family with my hands .

On August 17th at 11:00am, they had my family leave the room because they wanted to extubate me! They gave me another blood transfusion (I had three total) shortly after extubating me. I accidently removed the tube going from my nose to my stomache while they were extubating me. Later that night, the nurses helped me out of bed and I sat in a recliner for a while. I also got about half of my IV's removed. I was still in a ton of pain but was making progress!

On August 18th, I was in the recliner most of the day. Things were starting to look better and I was starting to be more alert!

On August 19th, they released me from ICU and moved me to my own room on the regular floor! I was using a bed pan whenever I had to go to the bathroom while I was in ICU but that was all about to change now that I was in a regular room.

August 20th 2011, I was able to walk to and from the bathroom and made a little walk around the hospital floor too! I was able to have some soft foods today.

August 21st I started having some pains on my left side mostly towards my back so the dr decided to order some tests.

August 22nd - I had another CT scan today for the pain I was having on my left side and they found another pocket of puss so my doctor said they will have to insert another drain in my stomache and told me that if the drain doesn't help they may have to take me back into surgery. I was still in a ton of pain and was taking short daily walks around the floor.

August 23rd- I had a procedure to drain the fluid in my stomach. They put me on the ct scan and started the procedure - it was SOOO much easier than I expected. They drained 150cc's of fluid out of my stomache and DIDN'T have to leave the drain in. Now we wait to see if it was an infection or just fluid.

August 24th - I started to get really depressed. I cried/wanted to cry all day - i'm sure it had a lot to do with the fact that I was alone most of the day. It had been 10 days since I showered .I still needed a lot of help getting out of bed, I had no appetite and I was in constant pain. I also got sick tonight, throwing up after major abdominal surgery was horrible! They think I got sick because of one antibiotic so they changed one of my antibiotics Thankfully, i didn't throw up again after changing the antibiotics.

August 25 - Still didn't have much of an appetite. I got out of bed as much as possible to take walks to help with my healing.

August 26th - I was finally able to eat breakfast, which was really exciting! An hour after I ate, My dr came in my room to tell me my platelets were high so he wanted to do another CT scan which means I wasn't allowed to have anything else to eat or drink. He was concered because high platelet count can mean an abcess. The dr said I have a small patch of fluid under my incision that they are going to keep an eye on and I had a little bit of fluid in my lung but he wasn't too concerned with that. I did have a LITTLE patch of fluid still in my stomche but my dr wasn't concerned about that much either. The bad news is that the pathology report from the hospital said I was positive for Crohn's disease so I had to make a follow up appt with my GI. I was able to eat dinner tonight. Two meals in one day was a huge step in the right direction.

August 27th - The nurse came in and gave me 1 MG of Morphine because my dr was coming in to remove on of my drains. He cut the stitches on the sides that were holding the drain in place. Then he put a piece of gauze over it and counted to three and pulled the drain out.

August 28th - I had my awesome nurse today who gave me a little extra morphine since I was getting my last two drains removed. When the dr removed these two drains, they didn't even hurt! I was told today that as long as my infectious disease dr releases me, I will be able to go home tomorrow!!! My plateletes are still high BUT they did go down a little overnight so they expect them to keep getting lower! At this point, the only thing i had left was to change from IV to oral antibiotics and get my IV out of my neck! My surgeon said he would remove my staples Friday. I woke up in the middle of the night to go to the restroom and noticed my incision was bleeding. It's been two weeks since surgery, why is it bleeding now?? I was soo afraid they were going to keep me in the hospital longer because of this.

August 29th - exactly two weeks from when I was admitted, I was told I was going to be released!!! All I had to do was wait for my dr to remove my central line in my neck!I was told I was FINALLY allowed to shower tomorrow..He also looked at my incision where it bled the night before and said that the area that was draining blood was the area that showed fluid of some sort on the CT scan so he said it was actually good that it drained because it meant he didn't have to drain it for me! It was also good that it was blood and not puss.

I don't remember when I had my first BM but I remember they were LOOSE - soo loose and I was going very frequently. I did get tested for C-Diff while I was in the hospital which came back negitive, thank god!

I had to have someone with me for about 4 weeks after I was released since I couldn't pick up my kids. I remember getting in and out of bed being difficult because my bed is a little high. A few days after I got home, I stopped taking my pain meds since I hated taking them. The staples did not hurt at all being removed.
 
Surgery: Right hemi-colectomy and two small resections of my sigmoid colon by mid-line laparotomy (open surgery) on 29th March 2012

In the summer of 2011 I was unwell while on holiday in Portugal. What started out as a bad flare up with relentless diarrhoea became an obstruction. This lasted for two day during which I was in a lot of pain, could not eat and vomited if I drank even small amounts of water. Thankfully, I did not need hospital treatment while I was away and recovered enough to get the flight home.

On returning I visited my gastroenterologist who could feel an obvious and firm mass over my iliac fossa and I was immediately booked in for an emergency MRI scan. The scan showed numerous problems including thickening of the wall of my bowel, fistulas and stricturing. Although I would say that these problems had been present for a while, certainly since 2005 when I had a barium meal and I had been in reasonably good health and was largely asymptomatic, my gastroenterologist referred me to a surgeon. Initially, as I was now feeling a bit better after a heavy dose of anti-biotics, I thought my surgical referral was just a precaution in case I had any future more serious problems. Despite what the MRI had shown, I did not think I was that unwell and was reluctant to consider surgery.

As this was on the NHS and it was not an emergency case, it took a few months to get an appointment. When I finally met the surgeon in January 2012, the message was clear, I needed surgery and it needed to be done in the next 3 months. This was a bit of a shock. Luckily, my company medical insurance would pay so I could pick the date and hospital at my convenience. During the period from July 2011 to January 2012, I had started to keep a diary of how I was feeling every day. This revealed that I was feeling unwell to some degree almost every day and I was kidding myself that I was ok. What I had become was well adapted to the issues - I chose what I ate carefully, I had learnt to deal with the fatigue and numerous trips to the bathroom. Luckily throughout all of this, I was largely pain free.

Having just booked a skiing holiday for the first time in 5 years for my 40th birthday and the first one with my children (aged 4 and 2) for the first week of March, I decided to book a surgery date after my holiday. As it turned out, the skiing holiday just confirmed I needed to get on and have the surgery as I was either fatigued or in pain for most of the week and could not enjoy it fully.

So, on 29th March I entered hospital for surgery at 7pm. Before the procedure, I knew the surgery could not be done laproscopically due the size of the fistulated mass that needed to come out. I also knew there was a risk I would need a bag after the procedure. I had discussed this with the surgeon who made it clear that it would be temporary and he would do all he could to avoid giving me one. That risk became more of a certainty when I entered the hospital and was introduced to the stoma nurse who marked me up for a stoma positioned just above my belt line. At this point there was the possibility of a colostomy or ileostomy due to the issues that were shown on the MRI scan.

I went down to theatre a little later than expected at 7.30pm. The last thing I remember is the strong smell of alcohol and the cold feeling of the anaesthetic running up my arm. I'd had surgery on a few occasions in the past (hernia, perianal fistula repair) so I was not unduly concerned about the process. The next thing I knew I was in the ITU/high dependency unit and the surgeon was talking to me. “It’s midnight John, the surgery was slightly more complicated than expected, but I am happy that it has gone well. You have a stoma.” I clearly remember those words as I dozed off into a morphine haze.

I later discovered exactly what had been done and why. The large fistulated mass in my ileum and strictures in my ascending colon meant that I had a right hemi-colectomy with about 30cm removed. Additionally, two fistulas from my ileum had penetrated my sigmoid colon requiring two small sections to be removed. My ileum had also adhered to my bladder, but not penetrated it. Had I waited much longer, things could have been even worse, which I think is important to remember for anyone who is uncertain about having surgery, these problems cannot be fixed by medication alone. I was given an ileostomy as it gave my colon the best opportunity to recover and eliminated the risk of internal leakages. I am happy it was the right decision, even though no one wants to have a bag.

The next three or four hours after coming round were not pleasant at all. I had a lot of pain from my bladder which was very full as the catheter was not draining properly. A large drain in my left side connected to a JVac was also poking something painfully. Not to mention the incision and the spasms my stomach muscled kept going into. I remember screaming out in pain. Really, really yelling and getting told off by the nurse for making so much noise. It was the worst pain I have ever felt. I guess this would be a 9 on the pain scale. Thankfully, a bit of fiddling with the catheter and drain, some slow deep breathing and a big, continuous dose of morphine got me into a much better state. The pain was awful, but it was short lived and quickly forgotten.

At this point, I had a central line in my neck, another IV line in the back of my hand, a catheter, a JVac drain, oxygen via PAP and morphine via PCA. Although I was getting fluid through IV, the dry oxygen going up my nose was making my mouth dry constantly. Every hour or so I had to call the nurse to give me water and since I was nil by mouth, all I got was a tiny amount on a sponge. As I lay there full of morphine, I already knew that I felt different and was feeling better. Knowing that I could feel the benefits of the surgery that early even through the obvious pain really helped me and spurred my recovery.

(30th March) The following morning I was visited by the physio. This was torture. I had to do two things, get out of bed and sit in a chair and blow into a contraption 10 times to ensure that I was breathing deeply enough to properly exercise my lungs. This does not sound too bad, until you realise there was a catch, I had to do a deep breathe that made me cough. Coughing was so unpleasant I initially refused to do it, but thankfully shortly after the physio left I managed to cough the bloody goo caused by intubation out of my lungs which was the desired outcome. If you are every asked to cough, remember to hold a blanket or pillow firmly against your incision, otherwise it is going to hurt like hell!

I actually managed to sit in a chair for two and a half hours, but most of that was spent in morphine induced sleep. During that time, my wife visited me, but all I managed to say in an hour was “I want to go back to bed!” She is a doctor (accident and emergency medicine) and told me afterwards she was actually quite shocked at how bad I looked and she does not shock easily.

After 24 hours, I was still not that comfortable, so spent a second night in the high dependency unit being constantly observed by nursing staff. By now my pain was under control and I was a lot more comfortable due to having an eye mask and ear plugs. The high dependency unit can get quite noisy (as I proved with my pained shouting) and the lights are always on and very bright, so this helped me to get some better sleep. I had a visit from the stoma nurse who changed my bag. She asked me if I wanted to watch what she was doing, but I was not ready yet to look at my stoma so just closed my eyes.

(31st March) The following day the physio visited again and this time I had to walk to the end of the ward and back. Not a long walk, but still quite a challenge. I was now in better shape, so was allowed into a normal room on the ward. Luckily, I had quite a nice private room with TV, wifi and en suite bathroom. I also got my possessions back including my iPhone, so started responding to all of the text messages wishing me well.

(1st April) At this point, I still had a lot of pipes in me, so it was relief to have the first one removed – the catheter. I was still occasionally using the morphine PCA, but quickly was coming to the conclusion that I did not like the effect it was having on me. I was now allowed to drink small amounts of water and was offered a cup of tea without milk. Drinking was difficult as my throat was very uncomfortable, probably from having tubes shoved down it and I had absolutely no appetite at all. I felt sick from time to time, but this I was assured was just due to the IV antibiotics (metronidozole). My bowels still had not really woken up, so I was encouraged to get up on my feet by the physio and walk up and down the corridor. This I managed quite well.

(2nd April) After quite a good night’s sleep, I decided to get up and have a shower. I managed to sit on a stool in the shower complete with Jvac at my side and have a shave and brush my teeth which made me feel much better. I put on pyjamas for the first time rather than a surgical gown which also felt like a good step forward (as I no longer had everything hanging out!). My physio challenge for that day was to walk up and down stairs which I managed quite easily. I did not see the physio again after this as I think they were now happy I was on the road to recovery.

At this point, my bowels started to wake up and dark greeny/black liquid began appearing in my bag. I was now therefore allowed to eat, so had some jelly and clear chicken broth. Eating was a huge challenge, but I managed a few mouthfuls of jelly and the rather revoltingly salty chicken broth made me feel quite good. At this point, I made an error. I started drinking quite large amounts of water without anything added to it. That night my stoma ran like a fountain and I was up every hour or so to empty it. Do not do this!

(3rd April) After a rather bad night’s sleep, I felt rather tired and down. This taught me another lesson though, you need to be patient with your recovery and need to expect to take some backward steps. Later that day, I had a visit from a work friend which really picked me up. He was surprised at how well I was doing and that I was able to get out of bed and walk around. I still had no appetite and was getting bad indigestion. Thankfully though, I was advised not to drink plain water, but instead to drink sports drinks (lucozade) that include salt or diarolyte. The presence of salt enables absorption in the gut and this produced the desired result, I needed to empty my bag only once during the night and with the aid of a sleeping tablet had quite a good night.

(4th April) By now, I was completely free of IV lines and the JVac drain was out. Having the JVac drain removed was painful, it felt like having a knife pulled out of my stomach and although I did not look, I could tell it was quite a large tube from the hole left hehind. I continued to struggle with eating. The low residual diet menu in the hospital was poor and the food was not well cooked. I tried a basic pasta dish, but could manage no more than a few mouthfuls. I knew I needed to eat, but I had really no appetite at all. At this point, I decided I would be better off at home. I was not in a lot of pain, I was free of all lines and I did not need any nursing care. I was also missing my wife and kids like crazy, so I asked my surgeon if I could go home the next day. He said if I thought I was ready I could go.

(5th April) Walking out of the hospital and a 45 minute taxi ride home made me realise I was still very weak. After not eating properly for nearly a week, I was 5kg lighter and clearly had lost muscle mass on my arms and legs. That evening, I ordered my favourite meal from a local Japanese restaurant (chicken katsu bento) and my appetite came back with a vengeance. It was rather odd not being able to eat salad, but you quickly adapt.

(6th April) After a good meal the night before, I was feeling excellent. Really, really good, in a way I had not felt in many years. At last I was really starting to feel the benefits of the surgery. So, I went out and mowed the lawn! Maybe not the smartest thing to have done, but it was not that strenuous and made me feel good that I was making progress. At last, things were getting back to normal, I was starting to eat well and my pain was being controlled with regular paracetamol and a couple of tramadol per day.

(7-14th April) The first week at home was spent getting used to having a bag and catching up on a lot of TV and reading. After one visit from the stoma nurse I was comfortable with changing the bag myself, including cutting it to size. I have had a few leakages, but I feel confident I know when things are ok and when problems are going to happen. Later in the week, two weeks after surgery, I had my staples out. There were 42 in total and for some reason, this was extremely painful. Having them removed did bring me some relief however as they were starting to feel very tight and I was able to walk much more freely. On 13th, I walked about 2 miles in total, but it was not comfortable and I was exhausted the next day.

(16th April) I had the stitches removed from my stoma and my wounds are healing nicely without any dressings covering them. I occasionally take paracetamol if I feel any pain, but this is mostly due to a rather nasty rash around my stoma. I am starting to feel ready to go back to work, the two biggest obstacles are fatigue, I doubt I would get through a whole day, and the discomfort I have from my incision which is improving every day. Luckily, I am not expected back in the office for at least another two weeks, so I can enjoy some rest and recovery time at home.

In summary, my surgery has been a very positive experience. If you are concerned or wondering about having surgery, particulary if it is an open procedure, do not hesitate to drop me private message.
 
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Here is my story. It’s a bit long, but broken out. I first gave a summary of each month from the start of the flare to the day of the surgery, March 22, 2012. Then provided a summary of each day I was in the hospital and then for the days since I’ve been home. I feel great and hope that I feel this way (or better) for a long time! I hope that others have been helped by surgery or if you haven’t had it yet I hope that you find relief if you chose to have surgery! :)

August 2011: Stomach pain and cramps started off and on. They would flare and be severe, causing me to be nauseous and often throw up from the pain. After this happened a few times in early August, I went to the ER and I was admitted on the 15th. I was admitted and put on a clear liquid diet with an IV and steroids. I felt better by the next day; I believe really because I hadn’t eaten anything. I was released on the 17th. Even on Prednisone, I ended up with severe stomach pain and vomited several times on the 25th. I saw my GI a couple days later and she ordered an upper GI and small bowel series. She wanted to see if there was any narrowing prior to a pill cam.

September 2011: Had the upper GI and small bowel series in early September. It did show narrowing at the end of my small intestine, so the pill cam was decided against as it was feared it would get stuck. Had days throughout the month with stomach pain and cramps.

October 2011: October was actually fairly uneventful. I met with a different GI who was covering for mine while on maternity leave. He hinted then that surgery would probably be likely. However, he said he would understand if I wanted to wait for my regular GI to return to have a colonoscopy and discuss the surgical option further. This is what I chose…although I’m not sure now if that was the best idea ever.
November 2011: Pain, cramps, and bloating started to get worse and occur more frequently. At this point I realized that surgery was probably a necessity; however I had yet to talk to my GI about it.

December 2011: December was worse than November. I didn’t normally make it a week without being in severe pain. There were many days I had trouble getting out of bed. Often this happened on weekends (most likely because I tend to eat more on weekends) so I managed to make it to work during the week; or at least work from home.
January 2012: Finally was able to see my GI and tell her about everything I had been going through for the last few months. I was actually having one of my bad days during the visit. Although she was sympathetic, the only thing she did was write me a prescription for Tylenol 3, an anti-nausea med, and told me to schedule a scope. I understand that any GI would want a scope, but looking back I wish she had done something else then. January was by far the worst. I don’t believe I had any pain free days. I just had days that had less pain and those were the days I would try to get everything I needed to done. I’m lucky that manager and team are so supportive as I was able to work from home on several occasions. I went to the ER on the 5th after trying to prep for a colonoscopy; I obviously didn’t get that scope. About half way through the prep I vomited it all back up. I don’t think any of it really ever got through me. I spoke to the GI the next day and said I would schedule one once I felt better; I never did call back and I’ve never heard from here. The ER gave me a couple bags of fluid and a few shots of morphine. The morphine didn’t really seem to do much, but I think the fluids helped. They told me after the first bag I was still severally dehydrated. They did basic x-rays which just showed a bunch of gas in my intestines. I lost about 15 pounds in January and my pants were still tight because I was so bloated; even though I was barely eating. I decided that I wanted to go to see a GI with more expertise and spent the entire month trying to get an appointment at Mass General. I went back and forth between them and my PCP’s office for the referral. My doc’s office would say they sent it, Mass General would tell me they didn’t have it. Finally after weeks of this, Mass General finally got everything they needed and I was finally able to schedule a consult…for March 20th! GRRR…I feel like I’m dying and they tell me I have to wait 2 months just for a GI consult….

February 2012: Went back to the ER on the 6th and again was admitted. I wanted to be admitted, I was hoping this time they would do more and that the doctors could finally figure out what was going on with me. Again I was put on clear liquids, given fluids, and put on steroids before I left. During the stay they did a MRI and colonoscopy. It was a good thing I felt a bit better by the 7th as I had to lay on my stomach for the MRI after drinking 3 bottles of barium. They did x-rays for about 20 minutes and then injected an IV contrast and then did more. The GI on call at the hospital then wanted to do a colonoscopy after the MRI as he said there was definitely narrowing and they wanted to determine the extent of the disease. I was supposed to have the colonoscopy on the 8th; however I couldn’t get down enough of the prep. They had me using GoLytely; which I had never used before. That was horrible…it was like horrible salt water that made me very nauseous. So, the next day when the GI docs came back to talk to me, I asked if I could be switched to Miralax with Gatorade. They agreed to let me change the prep and I got through that later that evening and was able to have the scope the next day. After the scope, I was told that although my colon looked good and they were able to get through the ileum, they could definitely see narrowing in the end of the small intestine and recommended I speak to a surgeon at Lahey Clinic (I later cancelled my appointment with Mass General). In order to speak to a surgeon there, I first had meet with a GI specialist. I was released that day and waited for the GI’s office to contact me to set up an appointment. They called the next day and I got an appointment for the following Tuesday! I was really excited about that. After meeting with the specialist and after he got the MRI and colonoscopy results; he said that I definitely needed surgery and that the Colon and Rectal Surgical team would be contacting me shortly to set up a surgical consult. They called the next day and my surgical consult was scheduled for March 2nd. I spent the rest of the month eating mainly liquids trying to keep myself out of the hospital until I could get surgery as I was pretty much out of sick time by this point.

March 2012: Consult with surgeon went well. He agreed with the GI that surgery was fairly necessary. I believe he thought I was going to go home and think about it, but I told him I had already decided I wanted the surgery as I couldn’t live like I had been anymore and I would rather have it sooner rather than later. He was able to squeeze me in three weeks later. I was scheduled for a laparoscopic ileocolic resection for March 22nd. I was nervous and relieved all at the same time. I was hoping that after the surgery I would finally start to feel better, however nervous about the surgery itself as I had never had surgery before. Before the surgery I was down about 20 pounds. I managed to slow the weight loss by eating mainly liquids. I ate a lot of jell-o, popsicles, Italian ice, noodle soup, and I ordered Ensure Enlive on-line since it’s not available in stores (at least not in my area and I had been given these in the hospital the two times I was admitted). The surgeon ordered blood work and a CT scan before the surgery. I went in 2 weeks later for the CT and for the surgical pre-op. The pre-op was fine. I had an EKG and they asked me a bunch of questions. For the CT I had to drink 3 more bottles of barium. I felt fine at the time; however it made me feel horrible within a couple of hours. I actually had trouble making it home, with traffic it took me about an hour and 15 minutes. I took an anti-nausea pill when I got home and slept until the next morning. I had to do a full prep the day before the surgery. Since I had so much trouble getting a lot through me if I had eaten any solid foods, I completely stopped any solid food 2 days before the prep. I was able to do the prep with no issues (again Gatorade and Miralax).

March 22nd: I had to be at the hospital by 9:45 and my surgery was scheduled for 11:30. I was brought into the surgical prep area around 10:15 – 10:30. The nurse asked me a bunch of questions, the IV was started, and the surgeon came in and made marks on my stomach of where potential incisions might be and possible stoma (I was not happy about that). They also put a thing for nausea behind me ear since I had never been under general anesthesia, however both my mom and sister get nauseous from it so they decided to be safe than sorry. They told me to say bye to my husband right before they started the anesthesia. That’s the last thing I remember, I don’t remember them wheeling me down the hall or anything to the OR. I woke up several hours later to my husband and nurse yelling my name. I was eventually able to complain about pain especially in my back and they gave me more pain meds and helped me roll a bit to my side and put pillows under my back to keep my on my side. My two hour surgery had turned into five. Not only did I have the ileocolic resection, I also had a rectosigmoid resection. I had a fistula from my ileum to my rectum and another between my ileum and cecum. They removed the last part of my small intestine, ileum, appendix, top of my colon and a piece of my rectum. I also had severe fissures, some of my intestines were fused to my pelvic wall and they had to call an urologist in as they thought my right ureter might be involved. A ureter stent was put in for the surgery; however it didn’t need any surgical intervention.

March 23rd: I woke up early (around 5 AM I believe) and in less pain than I was expecting. I was still in recovery as there was no room available for me yet. I asked the nurse if I could get up at all…the surgeon had told me to try and get up as soon as possible. She said we would start with a chair to make sure sitting up didn’t make me sick. I realized at that time that I had a catheter and a surgical drain. Getting up wasn’t pleasant, but definitely not nearly as bad as I thought it would be. I had a pain pump (PCA), which I could push every 7 minutes if needed. Once I was in the chair and sitting I noticed I could go longer than 7 minutes before I really had any discomfort. When the surgeon came to check on me, he was impressed that I was already sitting up (reclined, but out of bed) and said I looked really good for someone that had gone through a major surgery less than 24 hours ago. My mom and sister came to visit that day and I wanted to get up and walk before they got there. The nurse helped me up and walk around the nurse’s station. I then got back in the chair and waited for my visitors! It was hard to stay awake. I’m assuming between the pain meds and the surgery, my body just wanted to sleep. I did however get a regular room about mid day. I went for another walk (after getting help from a nurse to get out of bed) with my mom and sister down the hall and back. Later that night I went for a third walk with my husband when he got there; again just down the hall and back. Overall, I thought for the day after surgery I felt pretty good.

March 24th: I felt even better on this morning. I was a bit more awake and decided that I would try to go longer intervals without hitting the PCA. I slowly extended it through the day. I had a lot of visitors since it was Saturday, my mom and dad, sister, brother, brother’s fiancé, and my husband! I loved having so many people as it kept me distracted. I went for walks with different people throughout the day. I was slow, but I got up and went for six walks throughout the day. I did however cough a little as I was falling asleep at one point and that was a bit miserable. My husband was there and tried to hit the PCA as quickly as possible…didn’t help at first. I had to wait to be able to hit it again. I had heard sneezing and coughing could be a bit rough; but I wasn’t expecting that! They also removed my catheter earlier in the day, so I now had to get up when I had to pee. Which was fairly ok during the day; however when I had to go in the middle of the night that was a bit more unpleasant. It took me a while to get out of bed (I had figured out how to do it on my own during the day), then had to unplug my IV machine, and slowly walk to the bathroom. It was also strange for the first few days as I had to concentrate in order to be able to go to the bathroom; which I had not expected urinating to feel different; but I was told later it’s normal and as long as I was going it was fine. I was shaking so bad by the time I got back in bed though that it was hard to not be upset. I hit the PCA pump a couple of times though (having to wait 7 minutes for each) and then was able to fall back to sleep. I also had gas noise and could feel it moving around so I was hopeful the next day that some would actually come out and I would be bumped from ‘sips’ of water to clear liquids.

March 25th: Woke up feeling pretty good. I went for at least one walk before my husband got to the hospital. I was also able to get cleaned up (couldn’t shower because of the drain), but I cleaned up and put on my own clothes! I was pretty excited about that, made me feel more human than those hospital ‘gowns’. :p I believe I went for seven walks total throughout the day. I went for longer walks than I had the day before and felt pretty good; although my back started to really hurt from being hunched over and I was using the pain meds less. I also had no gas; which upset me by the end of the day…this was probably the day I felt the most defeated. My night nurse was awesome though (basically a psychologist and nurse!) and talked to me for a while and made me feel a lot better!

March 26th: I was moved to clear liquids!! I woke up feeling really good although this was the most boring day as I didn’t have visitors all day like I had for the last few days. It was Monday, so everyone had to work. My husband came to see me before work, during lunch (he worked only a few miles from the hospital) and after work. I did get up and walk several times that day on my own. My focus for the day was to try and stand up straighter to try and help my back pain! I ran into the GI specialist and he could believe how good I looked! I felt really good too; and I hadn’t had any pain meds since about 3 AM…and that’s the last time I have had/needed any pain meds! :) Although I wasn’t able to go home like I wanted, the day overall went really well and I was told I would most likely be able to go home the next day.

March 27th: I was put on a ‘regular’ diet; which I actually felt a bit overwhelming. I just ordered a piece of white toast and still had some of the clear liquid items as I didn’t want to overdo it. I also had the drain removed. That was a bit odd feeling. Didn’t really hurt, but I could feel it as it came through my abdomen…very strange. I was released around 12 and my husband drove me home. I had read on one of the posts that someone recommended bringing a pillow to put between you and the seatbelt…that was genius! I didn’t even notice the belt and the ride home wasn’t as bad as I expected…bumps were a little uncomfortable; but overall it wasn’t too bad. I was finally able to shower when I got home since I no longer had the drain. I just had to let the water and soap run down my body and not put anything directly on them and then pat them dry. I was so nervous that it was going to hurt that my back was killing me by the end…I really could have used a prescription for anti-anxiety meds more than pain meds (I never even filled the pain med prescription for Percocet)!

March 28th – 29th: I spent the day at my sister’s since I have two small dogs that like to jump and crawl on me. I paced around her apartment several times throughout the day as the weather wasn’t great. Again I had some white toast; I was pretty excited by the 29th when I made it to 3 pieces during the day. I really wasn’t hungry when I first returned home. I think between my stomach shrinking and the fear in my head the food caused pain; I just wasn’t interested. I lost about 5 pounds within the first few days of returning home. I also spent the 29th trying to walk and stand straight to try and help the pain in my back. I had a huge knot about half way down more on my right side than left. It didn’t help that I also had trouble sleeping flat. Since in the hospital the bed reclined it wasn’t as much of an issue. It took me a few days though before I could lay completely flat and then a couple more before I could lie on my side.
March 30th – April 17th: The last few weeks have gone really well. My first bowel movement I compared to mud, however they are solid now. For the first couple of weeks, right before or during a bowel movement I had pain. I believe it was as stool was passing the rectosigmoid resection. However, there was no real pain any other time. I had times that I had some discomfort and still today I still get weird feelings sometimes. Most of my lower abdomen is numb though, so I think some of it is nerves. I asked during my surgical follow up on the 13th if I should be worried and they said only if it stays like that for more than a year. I asked about exercise and was basically told if it hurt not to do it. They said to stay away from ab specific exercises for 3 months; however I could run, bike, hike, etc….I think I’ll wait another week or so before running again, but I’m glad that they think I’m doing so well. He was even impressed that I could sit up so well without any pain. We are moving and I helped load the POD on the 14th; I did less than I normally would have, but more than I thought I was going to be able to. I also went back to work on the 16th. I had a follow up with my GI on the 2nd (I continued going to the GI I saw at Lahey) and he put me on a new maintenance medication. I am now on Apriso. He wanted me on something since I have had disease in my colon in the past. I have another follow up in 3 months when he will probably do blood work to check on my vitamin/mineral levels. I will also need another scope in about a year. If there are any signs of early inflammation he will probably suggest I go to a 6MP. My husband and I would like children though and he said the best time to get pregnant is after surgery since you are in clinical remission. So, if I’m pregnant in a year the scope will just be pushed out a little. :)

I think that’s it. I’m sorry for the book. The last six months have been a bit rough, however things have really turned around in the last few weeks, and I still can’t believe it’s been less than a month! I truly believe that things will just continue to improve over the next month or so as everyday is better than the day before. I spent so much time prior to the surgery stressing about it, and I think the pain the next day was less than what I was living with before. I am happy to answer any questions anyone might have so please feel free to message me if you have any questions!

Good luck everyone!!

3 month Update: Hi Everyone! I can't believe it's been a little over 3 months since the surgery, time certainly flies. I feel great! :) Had a small issue with peanuts, so I haven't eatten those again, but otherwise I seem to be able to eat anything I want....even fruits and vegetables. The bad part was that once I realized I could eat, I have wanted to eat everything! I have gained back 20 of the 25 pounds I lost (I was hoping to keep more of it off). I just finished my 3rd week of a workout program called Insanity. There is a lot of jumping. The first day or so my stomach was a little sore, but it doesn't bother me at all now. Although I haven't lost any weight on the program, I have definitely gained back a decent amount of muscle which I'm pretty excited about. I have a follow up with my GI on 7/12 and hopefully he says eveything looks good. At that point my husband and I will just have to figure out when we want to start to try to have a baby. :) Hope everyone is doing well and please feel free to message me should have any questions!

Year+ Update: I'm still doing really well! I'm currently 30 weeks (as of May 26th) pregnant with our first child and have felt great so far! I still can't believe how much things have changed in the last year. We are getting ready to welcome our little girl in late July/early August and couldn't be more excited! :)

2+ Year Update: Finally had a post-op scope to check how everything was doing. I was supposed to have one about a year after the surgery, but then I was pregnant so it was post-poned. Doctor said everything still looks great and there is still no sign of the CD returning. He said that was a really good sign and should hopefully mean I'll be in remission for a while. :) I'm so excited. We plan on trying for baby #2 soon, so I'm happy I got the green light from my GI! Hope everyone else is still doing well.
 
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Hello All

I've just joined the Forum. I've had Crohn's for 35 years and back in October 2010 had an ileostomy and, subsequently, a reversal. I decided to record my experience in the form of a blog. It covers the run up to the operation through to reversal and beyond. It also gave me something to do whilst sitting in my hospital bed.

I'm looking forward to reading other people's accounts and seeing how the Crohn's experience compares between the US and the UK

Regards

Nigel

My blog can be found at w w w.highlandsrock.blogspot.co.uk (you'll need to remove the spaces from w w w)
 
This is a short follow up to my earlier resection post.

I had my ileostomy reversed on 27th of June and came home today, 1st July. The reversal surgery, as expected, was a considerably more minor procedure than the resection. I went into theatre around 8pm and was out about 1 hour later. As soon as I came round, the biggest and most obvious difference was how little pain I had. I would say after my resection my pain was a 9 (on the usual scale) until they got it under control with morphine, but after my reversal, it was barely a 4. Most of the time a couple of paracetamol is all I have needed.

For the first 60 hours I was on sips of water. This was quite frustrating as I was really hungry. Again this was quite different to the resection where I had no appetite for nearly a week. I passed wind within 24 hours and had a fairly substantial bowel movement within 48 hours.

Since resuming eating, I have had some cramps and I am experiencing diarrhoea rather than well formed bowel movements. This seems to be improving every day however and my surgeon assures me it will improve in the next few weeks. So far, so good then.

The wound has a "purse string" stitch and needs to be cleaned and packed every day. So far, it seems to be healing well and the dressing change is largely painless. The only issue comes if I laugh or cough, that is really quite uncomfortable and worse than having a wound with staples I would say.

I am probably going to do some work from home next week. I feel 100% well with good energy levels. In fact, the only reason why I would not go into the office is that I want the cramps/urgency to settle down a bit before I start commuting.
 
Hello JMC

Just read your post and I hope you recover well from your reversal. The one thing I would say is don't be in any hurry to start commuting again. Let everything settle down. I also had diarrhoea after the op (and still do sometimes) so use Loperamide as a regulator (usually 2 capsules a day). My surgeon said that some people remain on it long term without problems.

Having also read your resection post I can appreciate what you went through. It's very similar to my experience in October 2010, the only difference is that I was allowed to eat proper food the evening of the operation. Where did you have your operation?

I like your final comment about surgery being a positive experience. I have found the same and it's certainly a message I try to get through to others. I cannot praise the NHS highly enough for the treatment received.

Regards

Nigel
Crohn's Disease - 35 years and counting....
 
Having also read your resection post I can appreciate what you went through. It's very similar to my experience in October 2010, the only difference is that I was allowed to eat proper food the evening of the operation. Where did you have your operation?
Crohn's Disease - 35 years and counting....
My surgeon was Christopher Chan from Barts and the London. My surgery took place at the Harley Street Clinic, I was lucky that it was paid for by my company medical insurance.
 

Jennifer

Adminstrator
Location
SLO
I only remember the year of my surgery, not the date.

1999 - 17 years old - Bowel resection - 8 inches of TI and part of colon removed - Laparoscopic with hand assist - Surgery done at Lucile Packard Children's Hospital in Stanford Ca.

Had to clean out before surgery by drinking 2 gallons of unknown yucky clear liquid. Wasn't going to happen. They put a tube down my noes (took a long time and was very painful with much gagging) and I got over one and a half of the liquid until I became too full and threw it and the tube up. There's a longer story to that which is kind of funny if you haven't heard it already.

Had my surgery, was told I might wake with a cath but I woke without one. I was also told my surgery would only be laparoscopic but it turned into hand assist.

I didn't wake on my own. I was shaken awake by a nurse with my parents there in my room (should have woke in the recovery room) and was told that I needed to get up and go pee. I didn't feel like I needed to but they all insisted. I tried getting up and fell back down. Being cut through your abdominal muscles is an unbelievable pain. They simply stopped working. We pulled the bed up all the way, I still couldn't move that 6 more inches. My dad gave me his arm and I wrapped my hands around it, help on tight and he lifted me the rest of the way. I almost screamed. I could feel this burning, ripping sensation in my stomach. I stood up like a 100 year old grandpa and shuffled to sit on the portable potty at my bed side. I just sat there. I couldn't pee. There were a lot of people watching after all. So I decided to push and the pain is something I cannot describe. I about threw up from the pain but quickly decided to simply breathe because the pain that came from heaving, almost throwing up made my vision go black. I didn't pass out, but I almost did. Finally went pee for like an hour then back in bed thinking I'll never pee again.

The second day was better. I was awake a little more but was still in a lot of pain and would watch the clock and push my morphine pump the second I was allowed to press it again (I think it was on every 15 min). I slept most of the time.

The third day I was told to get up and walk. I got up, started walking, then told them no. My mom suggested that I at least walk to the bathroom and then she would help me wash. So I did and got a sponge bath. Went straight back to bed with my morphine pump (it didn't give me any hallucinations or anything, just took away the pain for what seemed like 15 minutes).

On the fourth day my morphine pump was taken away. I was in pain and bored out of my mind. My dad started taking me for walks around the hospital and the rest of my time was spent watching movies (there was a movie cart that would come by) and TV. I was also put on a liquid diet (that I could remember) this day.

Days 5-7 were similar to day 4. I wasn't really feeling much better. I was sent home the 7th day where that night once I was home (4 hours away from the hospital) I started vomiting and my incision broke open.

If you'd like to read about the complications/infection after my surgery you can find it on page two (first post) of my success story thread here: http://www.crohnsforum.com/showthread.php?t=19406&page=2
 
April 2001-Scheduled resection for blockage due to stricturing. Did the prep the day before which included Dulcolax and drinking a bottle of Miralax with juice and clear liquids for the entire day. It was a fully open surgery (rather than laparoscopic) and the surgeon removed about 5 1/2 inches. I was in surgery for about 4 hours kept sedated with morphine for the rest of the day. The next day I was up and went for my first walk. After three days, I was nauseated from the morphine and got off that. I was given oral Percocet for pain They also kept my Foley (catheter) in longer. The surgery took place on Tuesday and I want to say my Foley was in place until Thursday. I was discharged on Sunday after passing gas and moving my bowels.

The worst part about the whole experience was the five day stay. My family was with me pretty much around the clock until I was up to staying the night by myself. I passed gas on day four and was discharged on day 5.

June 25, 2012 Scheduled resection (fully open again due to scar tissue) due to stupid stricturing with the lovely prep the day before. Two Dulcolax tablets followed by the Miralax drink.

Arrived at hospital to find surgeon running ahead of schedule and waiting for me. Got prepped and ready. Woke up already in my room. This time I thought I could handle staying by myself, but have since decided that if/when the next resection happens, I'm having a family member stay with me for at least the first two nights. It was difficult to advocate for myself and my care as sedated as I was and I was a little nervous being by myself. This time I was in the hospital 4 days. I was on something different for pain because the last time the morphine made me sick, but I don't think what I was on worked as well as the morphine. They had me up and moving the next morning and the Foley was taken out in the afternoon. Was started on liquids, but had literally zero appetite for the duration of my stay. Not sure if that was because of the pain meds or the Reglan - a get your bowels moving quick med that I believe only gave me terrible gas, vomiting, and explosive bowel movements.


While I think the care I received was much better for the second resection, I didn't ever feel as good as I did after my first resection. Not sure if it was age or new medication. I was stapled this time and my incision actually looks better than the 2001 did. I am a little over two weeks out and while most of my incision looks good there is a little part that is still open and oozing. It's clear and not smelly, but I called the surgeon today to ask what if anything we can do for it. I also have terrible diarrhea still. I'm going easily 10-15 times a day. I am feeling better each day, but am impatient to be done with this. I just want to be back to my normal self.
 
My very first surgery was a success. Surgery was July 9th. I had a laparascopic ileocolonic resection. Pre-op CT scan showed major stricture at the IC valve and TI which we knew about. It showed a possibility of some involvement in the ascending colon, but it wasn't clear. I have had Crohns for 11 years, and all of my previous CTs, MRIs, and colonoscopies showed the same thing, so nobody was expecting any surprises with this surgery. Results of all imaging studies fit my symptoms. Everyone was surprised once the surgeon got started and discovered there was only minimal involvement at the IC valve, but huge inflammation with tangled mesentery (blood supply) at the ascending colon. Apparently on colonoscopies when the doctor thought she couldn't go any further due to stricture at the IC valve, it was actually a stricture at the ascending colon; during a colonoscopy it is not possible to tell the difference ( that is what the surgeon said).
Here are a few things I have learned from my hospital stay:
1. Hospital sheets are rough on the skin. Don't sleep with your bare back directly on the sheets. Make sure you have a hospital gown covering your back side when you sleep because it is softer than the sheets.
2. Noisey roommates were a real problem for me. I am so glad that I brought ear plugs and an eye mask. If there is any way to get a private room, I strongly suggest it. The first day I had a roommate with a 2-month-old baby and a three-year-old, so due to the noise from that she was moved to a private room the next day. An hour later I got another noisey roommate with dementia; she had a 24 hour sitter for safety reasons, and they were both very loud and sounded like they were having a big party, so she was moved out to a private room a few hours later. I was expecting no more roommates that night, but unfortunately I was woken up only one night after surgery at 4 am. This roommate was screaming in pain due to a bowel obstruction.
3. bring a small beany pillow or towel to roll up and put under your knees. You don't want to ly flat with an abdominal incision. Even though the hospital bed was adjustable with my head elevated and the knees bent as much as possible, it was still difficult to get comfortable. The towel roll under my knees really helped.

Here is the story:
Day 1- surgery day. July 9, 2012. The only thing difficult about pre-op was inserting two IVs (one in each arm) in my hand. I am accustomed to IVs in my elbow for colonoscopies. It hurt a lot more to put it in my hand. I didn't get a sedative, but was fine with that.
I woke up having nausea and pain about a 4-5/10. The ride up to my room made me really nauseaus and this surprised me. I never actually threw up. I was able to help move from the cart to my bed, and I was surprised by that. I had a morphine pump for pain relief. Before surgery I asked about an epidural, but the doctor said that wasn't his first choice because there is some risk of infection, etc. by inserting the needle. The doctor preferred to try the morphine pump first and us an epidural only if that didn't work, and I agreed. It was a good decision.
I was surprised to feel some hunger. I could drink little sips of water and ice. I brought suckers with me which really helped. My mouth was really dry after surgery.
Day 2- I am feeling confused due to still being under the effects of anesthesia and the morphine pump. the morphine pump is discontinued at the end of the day. I start Torridol injections through the IV and oral pain meds (Norco). I continue to have good pain relief.
I was suprised that in the morning I was eager to get up and walking. It was easier than expected. I was shakey, but didn't have a lot of pain. I started a liquid diet today and could only tolerate a little bit before feeling nausea, but I never threw up.
The second IV was removed today and so was the catheter. I retained urine after it was removed and the nurse did one straight cath which opened up the floodgates because after that I was peeing a lot for the rest of the day.
Day 3- I had my first episode of gas that morning, so that was a big relief.
I was now able to start solid food and I couldn't wait. I felt OK after eating, but that day I did have two episodes of D which I couldn't control.
The doctor said that if I was on the advanced course, I might be able to go home tomorrow. That made me nervous since I only know of one other person on this board who went home 3 days after surgery.
I showered today and did it all by myself except for bending for my feet. It really helped to have a shower bench.
Day 4- the doctor said I could stay one more day and I am glad. I continued to have a lot of D and they tested me for C. Diff, but it was negative.
Day 5- I went home. I got my first dose of Lomotil in the hospital today and it helped.
I learned the hard way why you should not be alone when you come home from the hospital. At home there is a small wall dividing my toilet and sink, but the hospital didn't have this. I forgot about the wall and I was a bit confused from the Norco, so when I got off the toilet I smacked my nose right into the wall. It really hurt and I was afraid of having to return to the hospital for a broken nose. Luckily it was OK and the ice helped.
Day6- present. I am slowly walking more. My incisions look good with no signs of infection. There is a 2.5 inch vertical incision at the belly button, and 3 keyhole incisions of about .5 inch each that are located above, below, and to the left side of the belly button.

Addendum: March 2013. I just posted this part under "Glad to have surgery", but thought I would also add this into MY Story.

A. Temporary Menopause- I started having hot flashes the day after surgery, but the nurse said it was hard to control the temperature in my room. Hot flashes continued in August, but I just thought I was suppose to feel weird due to surgery and also thought it was totally normal to skip my period due to surgery. Starting in September I was hit with shortness of breath, drop-dead exhaustion and continued hot flashes. I finally suspected menopause and called my GYN and got a blood test, and was diagnosed with menopause. I suspected it was due to the shock of surgery, but we didn't know that for sure since I had just turned 47. I called my surgeon and he said this can happen, although it is not very common (he never told me that before surgery). I felt much better with the hormone replacement patches. Eventually my period did come back in October. I have been doing well ever since and stopped the hormone patch. It makes sense how this could happen after colon surgery since the colon is so close to the uterus and everything gets moved around internally with this type of surgery.
B. Muscle Spasms- another thing the surgeon didn't warn me about in advance. I didn't have any muscle spasms in the hospital, but this was because the strong IV pain meds masked all the pain. My second night at home I had horrible pain at night, I woke up screaming and it felt like a bowel obstruction and was in the same spot where I had surgery. I walked around and took a pain pill and it helped. After a week of this I called back my surgeon. He said that since the pain was only at night it was probably a muscle spasm from lying in bed in one position for so long. I started taking Flexeril and that helped. He said muscle spasms are common after surgery because everything is moved around internally.
Pain from the muscle spasms was much worse than any other type of pain I experienced after surgery
I was able to stop all pain meds and the Flexeril 5.5 weeks after surgery.
 
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My story goes as follows: I was diagnosed in Feb 2011...went on prednisone and pentasa...after no change we added 6mp...once that didn't help, in January of 2012 I started Remicade. I believed it was working and after about 8 weeks I stopped the Pentasa. In the 9th week (mid-April) I experienced familiar stomach pains but I thought it was just a fluke. A week later I had an all out bout of pain so I went in for a scan and was admitted. I was told that for the past year none of the meds I was taking had done any good whatsoever and the best option was surgery. Surgery was scheduled for May 17; it was completed without complications. So I thought anyhow, the day I was supposed to leave I came down with a fever and bad diarrhea. Turns out I acquired an infection during the surgery so I had to go back in for another. I was reopen and "cleaned out". This time they were not able to close me back up because I was very gassy and bloated. They put in one staple in the middle of my 8 inch incision requiring the wound to be packed 2x day. Then tests came back to show that I acquired C-Diff...a wonderful infection. Then they found an abcess and put a drain in me...not terrible but not pleasant at all. All in all I stayed in the hospital for 13 days. My instructions upon going home were to behave normally, aside from physical assertion; Not to worry about diet. So at home my wife planned a small cook out and I ate a cheese burger. By 11 pm I was in the absolute worst pain, only second to the pain I experienced when I "woke" following my surgery. Tremendous and intense gas and diarrhea until 5:30 am, at that point, by the grace of God, I fell asleep. The pain lingered for a few days but subsided. About another week later however, I began to experience more gas, not quite as bad as the previous time. It kept me up late and I paced the hallway hoping to move it along. The only thing that happened was I threw up what looked like the fluid removed by the nasal to stomach tube. That had me concerned, I was worried there was an obstruction for I hadn't had a BM for over 24 hours. We decided to bring me in to the ER to have a scan done. I was admitted again for another 4 days and sent home with a picc line and antibiotics. I had two abscesses that they could not get to with a drain but were confident that antibiotics would take care of them. I went home this time on June 15th. I know on July 1 I had issues with pain, likely from food choice. I have had diarrhea every day since the surgery and late July decided to take imodium. For whatever reason this caused me great pain but I did have a regular BM for a day, but then it was back to diarrhea. Just last week I started a job before going back to teaching...working outside...no where to use a bathroom so I took another Imodium this past Monday...to no avail so I took another on Tuesday. Tuesday evening my wife and I celebrated our 8th anniversary. During dinner I ate more than I should due to the 35lbs I have lost since the surgery. By 10pm I was in pain second only to the pain I experienced the first night home from the hospital. I am still in pain but definitely less than Tuesday night. I saw my PCP today and thankfully he was chosen to test run a hand held ultra sound so he was able to get a look and determined I had a whollllle bunch of gas in my colon. I guess a little relieved but I still feel like I should be past this hump.
 
Thought I would come here and provide my experience:

Pre-Op:

I was diagnosed with Crohn's in mid 2011 in the TI with a known stricture in the TI and further up the small bowel and part of the Ascending Colon. This was found via a scope after presenting with typical flare symptoms of stomach burning (not cramps), vomiting, weight loss etc.

Bowel issues are on my mother's side of the family with my sister having near identical stricture locations 20 years ago, aunty and pop with bowel cancer (aunty survived the ordeal).

I was put on Aza 150mg nearly straight after diagnosis and rarely felt the flare symptoms but quickly fell victim to the stricture issues.

The last 6 months, I have had the worst time of my life. Not once have I felt 100%, I've been bloated, a very loud grumbling and growl, distension around the TI area and during those 6 months presented to ER with 3 bowel obstructions (Dec, May and Aug). The first time I was put on pred and was sent home thinking my strictures were inflammation only, the 2nd time I was told to prepare of surgery (no rush) and the third time I was booked in the next day.

Thur 9 August 12
Surgery early in the morning. After 4 hours they removed 80cm of small intestine and a small part of the ascending colon plus appendix and other not-needed elements. I'm told the strictures they removed were that bad they couldn't fit a straw through the opening, and immediately before the stricture, the small bowel was dilated to a similar size as the large bowel due to the backups over the last 6 months. They were so happy they got onto this now. The surgeon reported the rest of the small intestine looked healthy so time to recover. Was sleeping most of the day with my PCA and pee tube. Was on clear fluids later that day. No NG tube required.

Fri 10 August 12
High as a kite. Got me out of bed and walking in the morning. Still on clear fluids in the morning then free fluids in the arvo. Surgeons very happy with my recovery so far, wounds healing well, told I would get out on Monday peeing like it's going out of fashion (all I did was drink water!).

Saturday 11 August 12
Plenty of walking, off the IV, onto foods I started slow and stayed low key for the day, kept getting up and walking around, it took the edge off the pain. Still high on the meds but fast reducing the amount. Wound pain started wearing off but gas pains begun, all I wanted to do was fart but wasn't happening.

Sunday 12 August 12
Very early AM (little sleep due screaming patient) I was woken up by the sounds of an explosive trumpet as a tonne of gas came bellowing out of my rear. Felt great, not long after I was running to the toilet and had a character-building BM, very runny but I expected that.

Still had gas pains but little scar pain. Surgeons were happy about the BM so sent me on my way. Had my dressings changed and they let me go home.

Had 3 more watery BM that evening and small amounts of gas escaping. Walking regularly, eating becoming more regular.

Monday 13 August
Every day was better than the one before, used much less pain meds, changed dressings after a bath and noticed the keyhole incisions have almost closed over, still a bit of tenderness on my TI side and gas-trapped sounds there (this is the only thing worrying me that it is still sore and hurts to press).

I only had 1 BM, and it wasn't watery WTF!? Is this normal? It wasn't the perfect poop but it was soft, binded and not discoloured. I'm starting to freak out because I am expecting a good month or more to get back to regular and normal BMs (if anyone out there can help).


Sorry about the novel, but that's my experience. Being kept on Aza and may move to Humera in 6mths but I dont care, I'll do whatever is required to keep the nasty devil out of my insides.

If anyone wants more info feel free to PM me :)
 
12/09/2012 - admitted to hospital on the mainland for a colonoscopy and MRI having reported to my GI that I had a recurrence of symptoms of a bladder fistula that had previously healed
13/09/2012 - get all the usual bloods etc done and begin the delightful Picolax prep
14/09/2012 - colonoscopy is clear, though this doctor sees something but doesn't know what it is, same as my GI did last scope. I'm still none the wiser!
No time to do the MRI so I'm in hospital over the weekend. GI jokes that at least I'm getting a weekend's shopping out of my visit!!
15/09/2012 - I'm too knackered and feeling a bit yukky to go shopping, so I sleep for most of the day.
16/09/2012 - lovely leisurely afternoon's shopping. The retail park is about a 20 minute walk away, so I have lunch before walking back to the hospital. Feel a bit wobbly and almost have a major D accident before I can get back. Wheww!
17/09/2012 - I have my MRI. Not as bad as I thought it would be. I almost fell asleep in the machine as the things they wrap your tummy in were lovely and warm and soothing
18/09/2012 - my GI is not in today, so I don't get the results - feeling a bit frustrated and beginning to think maybe it's all in my head!
19/09/2012 - my GI's team of juniors are doing the rounds and tell me that yes the MRI had show a 'communication' between my bowel and bladder so I've been taken off the discharge list and that we need to wait to see the GI to discuss what the next step is
Later that day, another doctor - one I recognise from my stay last year - shows up and she remembers me too. She says that the it's the same fistula that healed last year and that the GI feels that surgery is now the best option as it is not likely to heal with meds. Tells me the surgeon will come to see me tomorrow as he's in theatre all day today.
20/09/12 - She comes back again with the surgeon who says that they can operate tomorrow. I'm in total shock as I thought I'd have to wait for an appointment. He says we can if I want, but that the fistula was worsening and doing more damage to my bladder and that the there is risk to my kidneys from the repeat UTIs that are a result of the fistula. I am persuaded and also by the thought that I won't have time to worry about surgery as I would if I went home and have to go back again.
He explains that he will remove the small section of bowel where the fistula is originating from and probably the part of my bladder that it's tunnelled into. No prep necessary,
just to fast from midnight. The anaesthetist's assistant comes to see me. No pre-med either as he says it can delay recovery, so I know I'm not going to get much sleep tonight! In a way I am relieved though, as this fistula business has been going on since I was first diagnosed, with a brief remission along the way.
2am I'm still awake and a lovely nurse makes me a sneaky cup of tea! I drift off eventually.
21/09/2012 - I'm up and showered early as they said I would be first of the list, depending on emergencies etc. The woman in the bed opposite has a feeding tube and is annoying me by constanly talking about food!! Eventually I slip my headphones on and watch TV for distraction. They come for me around 1pm. I'm still pretty calm at this point.
I'm wheeled into the theatre reception area and they check all my details before the ward sister leaves. I'm left alone for a few minutes and I start to freak out! A combination of lack of food, no cigarettes as I've decided to stop smoking, the sight of people in scrubs and paper hats milling around and my fear that they'll take me into theatre, I'll see all the instruments etc and jump off the trolley and run away! My surgeon pops in to see me before he gets changed and I'm in floods of tears. He sits and holds my hand til I've calmed down, then says : 'Shall we just do it, then?'
The anaesthetist comes to introduce himself, explains what will happen and wheels me into the little ante room. The surgeon pops in, in his scrubs now, to see if I'm OK. They start to inject something into the canula in my hand and I am falling backwards and slipping away. It's blissful.
I wake up because someone is shouting at me, it seems. They are telling me that my operation is over and asking me if I'm feeling cold. I realise that my whole body is sort of shaking and quaking. I don't think I'm cold, I think I'm in pain but they say they've given me something for that. I must have drifted off because I come to again and I'm still in recovery, but I'm wrapped up warmly and I'm not shaking or in pain. There are other people around me on trollies and I feel quite snug and peaceful.
I come to again as I'm being wheeled into a new ward. It's very busy, lots of people around and they draw the curtains round the bed. The nurses are lovely. They explain that I've got a drip and a catheter which will be changed regularly and that I'll be given pain meds on a regular basis. I'm having some pain in my back, but the nurse checks the catheter and flushes it to clear any blockage and that does the trick. I drift in and out of sleep.
22/09/12 - I wake up in a coccoon. The nurses are laughing and saying I had about six blankets on me when I came up from theatre. I'm getting lots of pain meds it seems - Oromorph and Paracetamol. I refuse Ibruprofen so I'm prescribed Tramadol instead.
They're saying I can have breakfast because I'm on enhanced recovery, but I can't face it. A cup of tea, yes, but I ask if I can have some Fortisips too. A nurse helps me have a bedside bath and a little walk around the bed with her help. They must have taken me off the fluid drip at some point.
The surgeon comes round and says he's very pleased with how it went. Despite no raised CRP, my TI area was very inflamed and damaged so he had to take out the IC valve and caecum along with 30cm of bowel and a the top part of my bladder. He tells me I have to have a cystogram in 5 days and if all is well and I am peeing OK, I can go home.
It's pretty hectic in HDU. The nurses on their feet non stop and a couple of patients are very disorientated and a bit bolshy - effects of the anaesthetic I think. At 2am they tell me that they've got a bed for me on a ward as I'm doing well and they need the bed for an emergency admittance. I'm moved to a side room in another ward.
23/09/2012 - I've started to get a bit wheezy and wanting to cough but scared to, so they bring me a nebulizer which gives me some relief. But my temperature's gone up so the surgeon comes to see me. My laporoscopic wounds are fine and my chest sounds clear, but he thinks it's an infection because of the cough and prescribes antibiotics. Tells me I have to cough to clear my lungs or I'll get pneumonia, but to hug a pillow when I do. Ow! Ow!
24/09/2012 - Managed a proper shower this morning, and although it was exhausting, it was lovely. Still have a temperature and coughing, so they have me on oxygen. Still not much appetite, but I'm eating a bit as they are saying that I should to help my bowel wake up. I wish it would, I feel as tight as a drum. I've passed gas though, so I guess it's a start.
26/09/2012 - my chest is beginning to clear and I'm going for regular walks round the ward now on my own. I still hadn't had a BM, so they gave me Movicol today which worked as soon as I'd taken it. Worse than Picolax taste wise, but oh the blessed relief. My appetite is coming back now too.
27/09/2012 - eventually have my cystogram at 5pm and all is well. Nurse takes my catheter out when I get back to the ward and I have to pee in the hats to make sure I have enough output
28/09/2012 - final visit from the surgeon who authorises my discharge. Instructions not to drive for another couple of weeks, not to lift anything heavy. They will book a follow up appointment for me to discuss possible post op maintenance meds with the GI.
 
Eyewitness account:
My husband had a ileocecal (?) resectioning last year. Not totally blocked but an increase in symptoms and large (billiard ball) growth/crohn's polyp in his intestine. When the doctor went in, he found that it had fistulized.
I would tell people having this surgery that they will one VERY bad week. Then it gets a lot better. I felt like many people on the forums I had read elsewhere made the surgery seem less intense than it is. Perhaps this is to keep anyone from putting it off which can be extremely dangerous, but I'd rather go in with all of the knowledge and he had a terrible week. Lots of pain- some at surgery site, some from the gas left in the body (they pump your tummy full of air to make room to work and some of it painfully dissipates near your shoulders). Once he passed things through his system, he got to go home. He had one mortifying incident- after the surgery he was still really dehydrated, they gave him tons more fluids- some of which took refuge in his testicles. So, though painless and temporary- that just added insult to injury.
After he passed some stool, he was good- not very much pain and pretty normal.
Advice-
Ask for the nausea meds as soon as you feel poorly (he was too nauseous to eat, which slowed his system and recovery).
Walk around- as much as it hurts- do it (within reason). It will get your bowels moving and clear the gas from your body. The sooner you get home the better you'll be able to really rest.
Minimize visitors unless you are okay with them seeing you feeling awful- they can visit later when you're at home.


That said, after the surgery he has been wonderful. A great year, no symptoms. He still doesn't have symptoms but does have some inflammation seen from colonoscopy biopsy, so now on to meds...
 
Well, well,
Sitting here doped up on a mix of paracetamol, tramadol and tramagetic, while popping antibiotics, with an incission from my solar plexus to bellow my navel.

Just had my fourth small bowel resection. It was supposed to be stricture plasty, but I was so messed up in there that the surgoen spent a couple of hours just getting to the stricture with my intyestines grwong together in several places. That they chose to resect another 12 cm of my small intestine. Thats the 4th time. But they tell me the surgery itself wen't fine, and the surgeon was very pleased with the job done...time will tell.

Post-op: When I woke up, they discovered no urine was passing trough the catheter, and I was bleeding, so I was put under again rather hurriedly ??? It now stings when I pee.

Beacause I was very bloated in my stumach my breathing was very shallow. So I develloped a mild case of pneumonia. It was mild beacouse they caught it early and got me on anti biotics. And I was in Intensive care for several days. And that was good thing.

I had intense gas pains. Even morphine can't really cancel that. But in intensive care they releaved that by giving me a pipe up the anus to releive the gas. Basically I spent the time there watching TV and producing a watery diorrhea...which eventually stopped.

Sepnt a few days in a recovery ward, then sent home two days ago. By then I was walking the corridors. But had an epidural in my back the whole time, right until the hour bfore I was released.

At home now, eating pain killers, antibiotics and Yoghurt and sleeping in a recliner,, as thats most comfortable. The pains are manageable, and I sleep well. Will try and go out for a short walk in the afternoon :)

Irritates me to think that I may have to go trough this again in a couple of years....thats been the cycle so far.
 
Hospitalised on October 29th with severe stomach pain and severe runs for four months got Imodium from my doctor a week before I got admitted but nothing helped. Was on really strong steroids and had one infliximab treatment. Was in there for 6 weeks nothing was working for me. Unbeknown to me my bowel could of perforated which could of killed me. Had an emergency sub total colectomy it was too save my life. Had it on nov 22nd 2011 6 days before my 21st birthday. Got discharged on dec 2nd 2011. I had help with absolutely everything I was sooo weak took me 3 months too recover
 
Thought I'd share Joe's last hospital op's with you all (oh what fun!)

july 12th: went to surgery to remove few inches of bowel, as that was all that was inflamed. Ended up removing few inches, along with golfball sized abscess and a portion that was perforated. Was in theatre for 6 hours. Can't say much about recovery as I was sunning myself on holiday (AKA crying on the bathroom floor of the hotel because I'm a wuss)

can't remember the exact date of the next op, but what had basically happened was bowel had seperated, causing scepsis. This went unnoticed for a few days, causing severe scepsis, which resulted in an emergency ileostomy with mucus fistula. Coma for 5 days. 2 unsuccessful attempts at sewing up Joe's tummy due to swelling and infection. Sewn up on a Friday, then off to the HDU on the Monday.


Think we had quite a worse case scenario here, but just felt I should share it in case people do go through anything that bad. He did pull through, despite people thinking he wouldn't, and is now back on his feet. People with crohns do tend to be fighters.
 
I was terrified at the thought of surgery and after reading other people's stories on this thread, I learned it was best to keep your anxiety for it as good as possible.


It's going to happen, so no point in letting it get to you. Stress just makes things worse!

I was freakishly calm while in the waiting room for my surgery and I think staying so calm helped me more than anything.

The surgery to remove the strictures went perfect but one of my lungs collapsed during surgery. I don't want to worry anyone about this as it's not common. They put the breathing tube at textbook depth but for some reason I don't need it that deep. I don't know the details.

This collapsed my left lung and as a result, filled it with fluid. I remember waking up in the recovery section with drs around me and thinking I was about to drown and this was the scariest thing I've experienced. They put me back to sleep when I started causing trouble for myslef.

I was in the ICU for about 2 days until my blood pressure and pulse got to normal, then moved to my own room. Another set back was once my bowels started waking up I had a day of vomiting. But I think both of these made me stronger in my surgery area.

I rarely needed any pain meds and if I didn't get a collapsed lung, I probably would of sailed through the recovery much sooner.

I was in the hospital for 7 days.
 
I was planned to have an MRI scan some time in July, but in the first few days of June it got to the point where I couldn't eat at all because of pain and couldn't leave the couch nevermind the house. So I took a trip to A&E.

About a week later, probably more I don't remember being there much, the doctors I had decided that surgery couldn't be put off any longer. The same day they decided I signed the papers and got taken into theater. I didn't really feel nervous, I knew I HAD to have it or I wouldn't be leaving the hospital.

Woke up later that day in the evening, then quickly went back to sleep, what did you expect? Next day I was awake properly, and not in too much pain really. I had morphine so I was doing alright. Couldn't roll onto my side though so that wasn't fun when my stuff was just out of arms reach! After I was taken off the morphine a few days later I got some pain, but nothing compared to before the surgery. After a day or two that died down too.

Overall I spent about 3-4 weeks in hospital, but only 8 after surgery. I then spent another month or so chilling at home with some awful daytime tv, and managed to put some of my weight back on. After being about 45~kg mid june I've gone up to about 60kg now, so not too bad!
 

UnXmas

Banned
I've had several surgeries. They've all been laproscopic, which means a much shorter recovery time.

The most major one - several hours in surgery - it took me a couple of months to get back to my normal. My surgeon says I recover far faster than most, but after that op I got a bad infection. I'd spent weeks going bored out of my mind at home with nothing to do but lie down, feeling too crappy to concentrate on books or telly or anything really.

Then I got the infection and it was the best day I'd had in ages! I started hallucinating from the fever, and it seemed to me that every thought I had was the most profound wisdom possible. I'd wake and look at the clock and hours and hours would have passed without me realising. Since time had been dragging horribly slowly while recovering up to that point, this made me very pleased. Then the antibiotics started working and I was brought back to boring reality, but also, thankfully, to sanity.

My most recent surgery, a couple of months ago, was probably the best I've had in terms of how smoothly everything went. I was having a rectal prolapse repaired. I was supposed to stay in hospital a few days, but knowing how much I hate hospital and how quickly I recover (and how well my parents look after me!), the surgeon allowed me to go home the same day.

There was no waiting around for hours before hand like there can often be, no enemas or laxative preps were required, and afterwards I was given my own room to recover in. And I was given morphine. :p My memories of waiting in my room for the nurses to discharge me are foggy and only partial, but my mum reports I was having a great time, very chatty and very uninhibited. I'm sure I embarrassed myself horribly like I do when I'm out of it from drugs. Does anyone else try to take their hospital gowns off so that nurses have to come and tell you not to undress yourself in a ward full of people, or is it just me that does than when on morphine? Anyway, this time I had my own room so I didn't have to worry. :p

When I had major surgery and wasn't allowed morphine because of how it slows down your intestines, I kept begging the nurse for painkillers, and as soon as she'd explained that I wasn't allowed, the lingering anaesthetic made me forget, and I'd beg her again. (She told me the next morning when I was more with it.)

I have quite a lot of surgery stories, maybe I'll add some more later.
 
i had my first major surgery this past April.I did have a abscess on my liver drained in 2005.my recent surgery was a small bowel resection.I had to have 6-7 inches removed from scar tissue build up and a stricture all in the terminal ileum. I also had a fistula connecting the small bowel and the large bowel.My surgery was done laproscopic. Everything went well.i had this done at 10:30 am Tues. and i was discharged 8:30 pm on Thurs. night.(originally scheduled to go home sat. morning)I did have my own recovery room which was nice.I was able to stand that Tuesday night on my own for a few minutes.The nurse wanted me up just for a few minutes.The next day i had the Foley catheter removed(which was very unpleasant).A few hours after it was removed the nurse told me i had 8 hrs to pee or the catheter would have to go back in.That wasn't happening so i drank plenty of liquid and walked around for almost 6 hrs and it finally happened.It wasn't much but it was something.I was SOOO relieved the catheter wasn't going back in.i felt like i just hit the lotto.I actually think all that walking helped my bowels wake up as i was able to have a liquid diet and had my first bowel movement since surgery.So thurs afternoon after the nurse was aware that i had a bowel movement she said she wanted to see how i would do with a soft food diet.And if i was able to eat she would recommend my discharge.
When i went home Thursday night i slept on the couch almost sitting up with pillows under my legs to elevate to help with the discomfort of the incision.I did this for 3 nights and then i was back in my own bed.I took it easy for the next week and about 10 days after surgery i was back to the gym doing a slow walk on the treadmill.It really felt good to move around.Its been almost 8 weeks now and i am almost back to normal.I was back to work in 3 weeks.I only took 1 oxycodone for the pain for the first few days every 6hrs and for about a week after i took one pill before bed to relax me and help me sleep.So i must say for my first major surgery for Crohns it wasn't terrible.One thing that really helped me was my wife was by my side the whole time.She never left my side except to go home at night around 8:30 pm and she was back by 9 am the next day.The hospital was over an hour away from home.I did have a choice to have this surgery done at my hometown hospital which was literally 5 minutes from home.But my GI recommended this surgeon and i am glad i listened.I did have a follow up with my GI recently and after he reviewed the surgical reports he said i made the right decision for surgery.It wasn't going to be much longer until i wouldn't have a choice.I am scheduled for a colonoscopy in Oct. to see if the disease has returned to that section.Fingers crossed.
 
Had my proctectomy surgery 6 days ago am in agony but got discharged yesterday with plenty of pain relief. Am a little weak and tired slow at doing things but better than my first op when it was an emergency
 
I've had crohn's since I was 15, I'm now 21. I had one flare at the age of 16 when I was diagnosed, it settled down but by the time I was 18 it was back with a vengeance. Before I had surgery, I had ileocolonic crohn's which was extremely painful, causing bowel obstruction and I'd had urine infections for a year and a half which turned out to be 2 bladder-to-bowel fistulae. The only medication I was given prior to my hospital date was prednisolone and pentasa, and a *LOT* of tramadol!

I went in to hospital when I was 20 years old on March 13th, had surgery the next day and then endured a hospital stay totalling 10 days. I had a right hemicolectomy, ileectomy, 20cm of bowel removed, a drain inserted in to my abdomen and a catheter was inserted to allow my bladder fistulae to heal along with a right stent. My doctors didn't know there was a second fistula til I was opened up. I was put in to high dependency for what I think was 2 days - I had my own morphine pump I was too weak to push! - before I was given my own room. For the first couple of days I was in there I had nurses come in to wash me. I was extremely irritable because the morphine was making me far too hot and itchy and I was embarrassed about people seeing bits I didn't want them to see. I didn't eat nearly the whole time I was in, which also made me very irritable. I wasn't hungry for a few days at first but when I was I was given oxo cubes disintegrated in hot water which I couldn't eat. When I could get out of bed myself, I couldn't stand up straight because I had 24 staples holding the incision shut. One of the nights a patient came in to my room causing a huge scene because she didn't want to be admitted, a nurse and 2 security guys had to come in before I convinced her she had to leave but I was so high on morphine that it barely phased me! Eventually I had a physiotherapist come in to walk me up and down the ward. On the 7th day my bowel began to work and by the 9th I was taken for scans of my bladder to see if the fistula had healed. The scans seemed fine, so the catheter and blood drain were taken out the next day when I was allowed to urinate by myself and go home.

I couldn't walk straight for a couple of months and I didn't know why at the time, but my stent was hurting my kidney pretty badly. The urine infections returned and after I got my staples cut out my scar turned keloid. A couple of weeks ago, after 3 months, I finally got my stent out via cystoscopy so I've had no more bladder problems and I received a silicone gel today for the evergrowing scar after talking to one of my GI nurses.

However, after 6 years of hell and having my life taken from me, I'm in remission. I started azathioprine 5 days ago to make sure the fistulae don't return, I got my humira delivery this morning to prevent inflammation returning and I still take pentasa for flares. My bowel has been a bit explosive since surgery but it's much better than going a month at a time without any movements at all. I'm still signed off and on benefits but I've been looking to get back in to work now that I feel human again, I can hang out with my friends like a regular 21 year old and although he was with me every step of the way, things with my boyfriend of 2 and a half years are slowly getting back to normal. He ran the Rat Race in March for Crohn's & Colitis UK and raised over £1000. I know it's only been 3 months but I've felt great since I healed from surgery and I have hope that the remission will remain for a long time.

My (squint... thanks Mr Surgeon) 6 and a half inch battle wound!
 

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For about a year i was suffering really badly with my tummy horrible cramps and really bad pain. i eventually got taken in to hospital and they came to the conclusion it was pelvic inflamitary disease and they said it would go away. It never did the pains got worse the diaroreah came and i lost lots of weight. My gp finally refferd me to a gastroentologist and i had a colonoscopy and endoscopy. straight away from what he saw he said i had crohns disease. my older sister has it so i pushed to be refered as i know how bad it can be. She has had two bowel ressections, a stoma for a year and had it rejoined. She is now in remission. so from seeing my sister i recognised the symptoms.
ive been in hospital about 7 times in the past 2 years having bad flare ups. also i had a little boy nearly a year ago too. Ive just recently had a small bowel resection. I feel like a new person. No pain or feeling ill. Im now back in work after 4 weeks. I hope that im in remission now and it never comes back !!
 
Hi everyone, i'm Mike and i'd like to share my experience with surgery and how it lead to my diagnosis of Crohn's disease.

At the beginning of 2012 I made the very difficult decision to intermit from my third year of university because I was suffering from terrible fatigue and horrendous back pains, which were seriously effecting my studies. At this point in time I was considered to be in excellent shape and perfectly healthy. I had no idea what was wrong or what was coming...

In the months prior to this, I had experienced some trouble going to the toilet (loose and sometimes bloody) but it was very infrequent and never caused me much bother and so, rather foolishly, I ignored it...

After intermitting I spent a few months visiting the doctor and having various scans, all of which were inconclusive. I was admitted to hospital once for stomach pains after my GP examined me but I only stayed for a few nights before leaving because I felt fine again. This lasted a few weeks but slowly I started to get worse. It was at this point that doctors suggested I might have Crohn's Disease. More tests were scheduled including a colonoscopy. Meanwhile I stayed at home, alone, in bed and dosed up on Tramadol for the pain while I waited for each test to come around. I even had a friend take me to hospital early because I knew things were getting very bad but they simply looked me over and said they couldn't move the colonoscopy forward.

Six months had gone by since intermitting and I was feeling very ill by the time I went for my colonoscopy. It should have been relatively pain free and only a little embarrassing at worst but I found it extremely painful. My large bowel was clear and it was only as the doctor tried to force his way into the small intestine that it hurt like hell! I was screaming and swearing so loudly that the next group of patients in the waiting room could hear me and where starting to worry. However, not one of the staff was worried and I was sent home to wait for an apparently "urgent" MRI.

I stayed in bed for another four weeks, still getting worse. I was loosing a lot of weight, throwing up everything I tried to eat and I could barely move from the pain. I knew this was it. If I didn't do something now I knew I was going to die. I called 999. The ambulance came and I just managed to answer the door.

At the hospital (a different hospital I might add!) I was scanned and immediately rushed into surgery. Five hours later I awoke in tremendous pain. I later discovered that 90cm of my small bowel had been removed and 10cm of large too! My intestines had literally burst and caused a large abscess. The surgeon had performed an ileostomy and left me with an eight inch scar and a stoma bag. I was very lucky that nothing else had been affected!

I continued to suffer though unimaginable pain for the next 3-4 days. I was on a continuous self administered morphine drip. I threw up litre after litre of disgusting smelling green stomach bile (for this they stuck a tube up my nose for 24 hours) and I was finally given some acknowledgement for the pain I suffered as an apology for not listening to my previous cries for help. Apparently I have a very high pain threshold, probably as a result of all the bodily harm I endured from riding BMX? Anyway, it doesn't matter. My life was saved and I was finally diagnosed with Crohn's Disease (what's interesting is that I most certainly would have died if I had waited for the MRI they booked which came though the post after I had had surgery and returned home!).

My initial surgery was the 21st of July 2012 and i've been recovering ever since. My Crohn's has more or less gone into remission but my back still troubles me daily (I'm actually 90% convinced that I have Ankylosing Spondylitis but all the tests are negative!). I am due to have corrective surgery, to remove the stoma bag (Thank God!), in a couple of weeks time (7th Aug 2013). I'm not looking forward to it but I cannot wait for it to happen!

So in short, i've had a horrible experience with surgery so far and i've just been very unlucky with the diagnosis. I don't think the majority of people with Crohn's have to go through this before being diagnosed so don't let my experience scare you. From what i've read so far it is far more common to be dealt with earlier and avoid having to go through this.

My deepest empathy goes out to anyone unfortunate enough to have Crohn's Disease. I have been extremely lucky (so far) with the relatively mild continued affect it has had on my bowels compared to the thousands of people suffering daily, and a lot worse than I, around the globe.
My thoughts are with you all.
 
Having surgery Tuesday

Well, after a year or so of rejecting the idea of surgery I began to see that I would probably eventually need to have it, and better to be having it now while I'm relatively well (Humira is working for me since I started taking it about 9 months ago), in my 60's (I am 65 nearly 66), and working which means I can take paid sick leave to have it done. Also my GP said I could likely have a blockage due to my stricture and would have to have it done in an emergency op. (The inflammation in my small bowel seems to already have been quelled by the Humira). So I saw the surgeon last Friday and am booked in to have the op. this coming Tuesday, Aug. 6th.

I am having a "Right hemicolectomy and ileostomy" and will probably have a temporary stoma (is this called an ostomy?) which will be reconnected to my bowel at a later date. I like my surgeon, he's very open and honest with me, answering all my questions.

Can anyone tell me how long I might be laid up before I can get back to a relatively "normal" life?

Also is the surgery likely to assist me to be able to be able to eat more and more varied food, and help me to put on weight more easily (Lost a lot of weight in this last year, am now putting it on a again but very slowly).

Also what side effects am likely to have after surgery? - I hear that some people still have problems with diahorrea and similar issues - and will I be able to absorb Iron more effectively - I am short of breath and get tired easily due to low haemoglobin.

Thanks in advance, any and all advice and comments welcome.

Gra
 
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UnXmas

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Well, after a year or so of rejecting the idea of surgery I began to see that I would probably eventually need to have it, and better to be having it now while I'm relatively well (Humira is working for me since I started taking it about 9 months ago), in my 60's (I am 65 nearly 66), and working which means I can take paid sick leave to have it done. Also my GP said I could likely have a blockage due to my stricture and would have to have it done in an emergency op. (The inflammation in my small bowel seems to already have been quelled by the Humira). So I saw the surgeon last Friday and am booked in to have the op. this coming Tuesday, Aug. 6th.

I am having a "Right hemicolectomy and ileostomy" and will probably have a temporary stoma (is this called an ostomy?) which will be reconnected to my bowel at a later date. I like my surgeon, he's very open and honest with me, answering all my questions.

Can anyone tell me how long I might be laid up before I can get back to a relatively "normal" life?

Also is the surgery likely to assist me to be able to be able to eat more and more varied food, and help me to put on weight more easily (Lost a lot of weight in this last year, am now putting it on a again but very slowly).

Also what side effects am likely to have after surgery? - I hear that some people still have problems with diahorrea and similar issues - and will I be able to absorb Iron more effectively - I am short of breath and get tired easily due to low haemoglobin.

Thanks in advance, any and all advice and comments welcome.

Gra
Hi, I am having a permanent ileostomy very soon, and have already had a total colectomy and several other surgeries. Yes, it is called an ostomy - an ostomy is the name of the opening in the skin that is made for a colostomy, ileostomy or urostomy. Stoma is the piece of intestine (or ureter with a urostomy) you'll have coming through the skin, so "stoma" and "ostomy" mean pretty much the same thing. Colostomy, ileostomy and urostomy refer to different kinds of ostomies - a colostomy is made from the colon, ileostomy from the small intestine (when the colon has been all or mostly all removed) and urostomy is from the bladder.

When I had my colon removed, it took me about 8 weeks to feel completely back to normal, but I did have an infection which made the recovery longer. (Though my surgeon still said I recovered remarkably fast, and I'm in my twenties, so I guess 8 weeks would probably be about average for that surgery, and your surgery will probably be of a similar severity and duration as my colectomy.) My surgeon's now telling me about the same - 6 to 8 weeks - to recover from my ileostomy surgery. If "normal" for you includes being very active - sports, strenuous exercise or heavy manual labour - you might want to leave it a little longer, especially with any exercise that uses your abdominal muscles.

Whether you can eat more and gain weight more easily after the surgery depends on what is causing you to lose weight now. If the symptoms which caused you to lose weight originate in the part of the intestine you're having removed, then, yes you should find eating a lot easier. If you still have trouble gaining weight, it probably means you have symptoms resulting from disease in other parts of the digestive tract, but at least after you've had the most diseased parts removed your doctors will have a better idea of what's causing the weight problems. I'm not sure if you'll have the same, but I'm being put on special liquid food supplements for a few weeks before and after the surgery, as any big gastroenterological surgery usually results in weight loss at first because it's difficult to eat when you're recovering. I lost about half a stone in the first few weeks after my colectomy. You'll also probably be told to eat only soft, low fibre foods for a few weeks after the surgery as this will reduce symptoms while you're healing.

I'm not sure about absorbing iron. My guess is that if the part of bowel being removed is from the colon then it won't affect absorbtion as that is done in the small intestine, though I do remember reading that with an ileostomy certain nutrients aren't absorbed well because the last part of the small intestine has to be removed. But I'm uncertain on this, so I might have got that wrong. You may well find diarrhoea worsens after the surgery because water is absorbed through the colon, so the more colon that is removed, the less time stool spends there and the less water (and salt) is absorbed from it. After my colectomy I was told that the diarrhoea would lessen over time as the bowel somehow adapts, and I've found this to be true. You may also be told to eat a bit more salt after the surgery.

I hope this helps - I haven't had the same surgery you have, so my experiences and what I've been told to expect from my upcoming surgery may not be quite the same as what you'll experience, but it should give you a general idea. I hope it all goes well for you!
 
Reading through these stories, it seems I am lucky to have had a mostly boring and I eventful surgical experience. A little background leading up to the surgery first though.

Got diagnosed with Crohn's in January 2010, and was put on Pentasa. Thought it was working, b/c my symptoms seemed to ease a bit, they weren't gone completely though. I then moved back to the US from Germany in May 2012 (I'm in the US Air Force), and my new GI team was not happy that I was still having symptoms, and did another round of tests and found a severe stricture and ulcers in my terminal ileum much so that he couldn't get the scope into my small intestines...and in his words, it was a bloody mess. But at the time, he didn't know if it was mostly active disease or scar tissue or both, since I still had inflammatory markers in my bloodwork, we knew that at least some of it was still active. So, he put me on Humira, which I was thankful for, I'll take a shot once a week over 12 pills a day any time!!

Fast forward a year to last August and I'm due for another scope. My doc still can't get into my small intestine due to the stricture, but the ulcers have cleared and the active disease has decreased, but he's worried that he can't see into my small intestines to see what's going on. He sends me to a colo-rectal surgeon who he works hand in hand with, but he hesitant to operate, b/c he doesn't like to operate on Crohn's patients unless its absolutely necessary, cause of the likelihood for additional surgeries and there's only so much bowel one can have removed. Since my disease wasn't that severe, he didn't want to do it, but after discussion with my GI Team and others in the hospital, they decided to operate, b/c they were pretty certain it was mostly scar tissue at this point, and no amount of meds would ever get rid of it.

So, Nov 15th, I had around 6" of my terminal ileum and colon removed along with my appendix. The laproscopic surgery went better than they hoped due to the fact that the entire affected area was covered in creeping fat (I have a picture, it's pretty interesting). So they could see exactly what needed to be removed. The surgery was on Friday and I was released on Monday. My recovery has been uneventful with only severe pain the first week or so and minimal pains every now and then since. I know that I have to take it easy, but it's hard when I feel mostly ok and get so bored doing nothing. The plan for the future is to stay on Humira and see how long it keeps my disease from returning...I know it's a matter of when, not if, but I'm looking forward to some time in remission.

That's my surgery story....not too scary, not eventful, but wanted people to know that sometimes they can be just that...simple, if its caught before causing a complete blockage, which is what my GI team was afraid would happen if left untreated.
 
That is interesting greeneyes. I think I posted somewhere up this thread....but I had a the surgery and was never put back on ANY meds. Part of me says WOO HOO..(Hated all of those Pentasa pills...isn't that ridiculous???) Part of me says that is kind of weird that I am not on meds knowing the recurrence rate. I also had my appendix out...was never really sure why. I think they said cause inflamed tissue was all over it.
 
I just went in for my follow ups this week and my GI doc wants to stave off recurrence as long as possible, he told me about some study that was just released with the rates of recurrence on people with no meds, 5-ASAs, and biologicals. I think being in the military, they'd rather keep us on meds than risk the disease coming back sooner, and I'm ok with that, since I only have 6 years left until I can retire, I don't want them to have any more ammo to kick me out before then.

My surgeon said there were two reasons to remove the appendix, one, it was inflamed, like you said, and two, once that part of the terminal ileum and part of the colon where it all attaches is removed, there's no place else to attach it back...so, free appendectomy!

Hopefully you stay in remission a while a beat the odds :D
 
I honestly don't remember the exact numbers, I knew I was staying on Humira, so I didn't pay a lot of attention...and I was still drugged when he told me, lol, and no clue where the study came from. But I can ask him. I'll respond back when I find out.
 
Location
USA
I guess my surgery experience has been quick both times I have had it. First time was in 2007, where I had 20 cm including my ileum, mainly small intestine, and part of my large removed. This was done laproscopically, with a 1 1/2 inch incision along the bottom of my stomach, and two port holes. I was released from the hospital on day 4 from that, and went to a Christmas party the weekend after (on day 7 or so). I was back to work in two weeks time.

My second surgery I just had two weeks ago, on Wednesday January 8th. They removed 40 cm of my small intestine, including 30 where the ileum used to be (and a bit of the large once again), and another 10 cm elsewhere... along with a strictureplasty in another spot. They did this one lapro as well, with a 2 inch incision from my belly button, down to the bottom of my belly. No port holes this time, all just one incision.

I was on narcotics for 4 days following this last surgery. I started walking 3-5 times a day starting the day following my surgery. My intestines didn't fully wake up until day 5, when I passed gas. They let me have clear liquids that day. The following day, they introduced a low residue diet, and I ate three small meals that day. The day after that (Tuesday, day 7), I went home. On Friday, I wanted to get out of the house so my wife took me to the mall where we ate at the food court. I didn't walk a bunch, but felt good to get out of the house. We also went to Target later that night. The next day, I also got out of the house and visited my wife's parents. This past Monday, I came back to work and drove the first time (1 1/2 weeks since the surgery). I was going to play by ear how long I would go depending on how I felt... but I felt fine the entire day... so I made it a full 8 hours (thank goodness I have a computer job). It has been that way all week, made it 8 hours everyday... and we are to Thursday already. The incision is crusting over, so I know things are healing well. I am standing up more straight everyday, and walking is getting easier.

All in all, my recovery for both surgeries seems similar.... though it tends to surprise people that I am back to work so quick. I don't think I have seen others recover as fast as I have... but I tried my best to do what I needed to to help the healing process, and had a will to get back to normalcy. I guess that could have something to do with it. I find it interesting as well, since I am on Tysabri which really kills my immune system.

My thing to everyone is.... it widely varies for everyone on this recovery thing, and depends on pain tolerance, etc. I also think me being young (25 years old) helps as well. I just know there is hope to recover quickly... it isn't always a slow process....
 
Hi all.
I'm scheduled for surgery next week. Brief back-story: Dx in 2007 at age 44 (probably had it since 20s - but mild enough to ignore). Hospitalized in April 2012 with severe pain and inflammation. Went on Entocort (Budesonide) 9mg a day and that summer I felt great. Lots of energy and pain subsided with time. Started SCD in June 2012 and thought that helped quite a lot also.

Skip ahead to 2013... began to have gradually worsening symptoms and felt a small mass/ "lumpy thang" around cecum, ileocecal, appendix. lack of appetite in the mornings (I didn't think much of it, but I did start losing weight)

By October I was having a lot of pain in RLQ. Then intermittent stabbing pains. Went to my GI who recommended staying on 9mg and come back in a month. Next appointment, same thing. SO I went to my primary care Dr and asked him if the swelling and pain could be something else. He ordered a CT and that showed tangled mess of small intestine and inflammation of ascending colon.

I have a "small" abscess snuggled up to the back side of the cecum and "pockets" of infectious fluid in the small intestine near there. I was on oral antibiotics for over a month (Flagyl and Cipro. Then Flagyl and Levaquin). And now I'm beginning week 5 of at-home IVs of Flagyl and Invanz. I had relatively mild symptoms for a few years... off and on Budesonide (Entocort) since April of 2012. Now I'm taking 9mg every day since August of 2013.

But I have a nest of a mess in the ileocecal area and now I'm scheduled for surgery next week. The doctor said some of the small intestine will be removed, as well as the cecum and appendix and maybe part of the ascending colon. I've had 4 CTs in the last 3 months. I don't think they've seen any evidence of fistulas or fissures. But I don't suppose we can rule anything out until he gets in there.

This is all new to me and I'm not even sure what questions to ask the surgeon. I have a meeting with him a few days before surgery to go over details and ask any more questions. He has a great rep. a specialist in colon surgery and I do trust him to do the best he can for me and I am thankful for that.

Right now I'm exhausted. Sleeping a LOT. The winter has gone by in a sleepy, pajama-clad blur. And, to be honest... I'm kinda scared.

I hope removing this infected, inflamed area will help me feel better in the long run. I hope!

Thanks for sharing your stories and I'll try to share mine as time goes along.
 

valleysangel92

Moderator
Staff member
Three crows - good luck with your surgery! I hope you will find relief and it will get you into remission.

My surgery story -

Admitted on 24 th June 2013 , blood tests done and an ECG ( I'm often tachycardic) . One fleet enema around 10pm.

25th June - surgery day. Fleet enema around 6 am. Surgeon and aneastnnatist came to see me and check I understood everything. Taken to prep/recovery room around 9 am. Went to theatre soon after. spent around 11/2 - 2 hours in theatre and stayed in recovery until around 3.30 . At this point I had oxygen, one IV with fluids and PCA morphine and a catheter. IV had to be relocated once during time in recovery.
Spent the rest of the day in and out of sleep, being nagged to press my PCA because I kept forgetting until the pain was bad.

26 th June - stayed on PCA and fluids, allowed to take sips of water, oxygen removed, attempted to get out of bed, but not able to tolerate it yet ( I went all wobbly and it made me vomit) .

27 th June - got up out of bed and started to walk around a bit with the help of physio therapists. Catheter removed in the afternoon. Began having nebulizers ( I'm asthmatic and couldn't clear my lungs enough). Light meals allowed

28th June - able to get up and about more freely, IVs stopped and oral pain meds started . Continued to tolerate meals.

29 th June - allowed home.

After I got home and cleared my 'morphine head ' I felt much more like myself, I managed the pain with paracetamol and the occasional tramadol. It took about 6 week's for me to start getting back to normal.
 
For me...

Admitted June 4th, 2013. Surgery that afternoon and I was in a room it seemed to me like only minutes after I was put under. Bet it was longer for my folks and my BF.

Was bedridden for 2 days or so... its a bit of a blur, but once the catheter was removed, they did want me to move around a little, but not much at first. I had a green light to pee, so essentially, I was walking 10 feet or so every hour. The nurses thought it was hilarious that they could time my pees almost down to seconds!

I had been given an epidural because during the prep my options for being knocked out were many. I really didn't care by which means I was out.. so loan as I was out. I asked what THEY thought I should do, which was the epidural. Aside from all the tape they had to put on my back to keep it in place (which I am seriously allergic to), it was magic. Once it was removed, I need pain meds quite a lot. I was given morphine with gravol, so I slept every time I got painkillers.

Late on day 3, I asked if I could go for walks and maybe go outside and the nurses didn't want me walking that much and that far, but one of the orderlies brought me a wheelchair and told me that the nurses said yes to me going outside, but ONLY in the chair and not alone.

Getting fresh air helped my mood, but I was still damned sore. I was in for another 2 days before I was released. The pain got to be less and less, but walking around was still really difficult.

When I finally pooped, I knew they'd be dying to get rid of me.

I recall the car ride home as being the most painful part of the process. Don't get me wrong... my incision site hurt like hell for weeks, but the bumpy Quebec roads were the worst.

I was sent home with a prescription for Tramacet and took it for at least 3 weeks, tapering off each week.

To this day, my skin still feels pretty tight, but it's not actual pain so much as it is a bit uncomfortable and off-putting.
 
I had surgery a couple weeks ago and just wanted to thank everyone who had previously posted in letting me know what to expect as I went through the process. I want to start off by saying that finally getting the surgery done was one of the best things to have done. I feel better than I have in years and its only been 12 days since I had the procedure.
I have been diagnosed with Crohn's for almost 15 years and had symptoms for a few years before, progressively getting worse as the years went by. I have inflammation in my ileum and scar tissue was building. I had been contemplating surgery with my doctors for the past year or so.
About a month before the surgery I had a CT scan done and it showed a lot of narrowing in the ileum. I also had a colonoscopy 2 weeks or so before the surgery that showed the same thing. After the colonoscopy I felt so awful, the tools inflamed and irritated my small intestine to the point where I was hardly moving anything through. My appetite decreased a ton and I was probably eating a third of what I was eating before the surgery. Over the next 2 weeks I lost about 10 pounds from my 135 pound frame. I ended up being admitted to the hospital on 1/15/15 as doctors were afraid that my small intestine would burst.
1/15/15: I was admitted at 6pm and was put on an IV, a steroid and clear liquids until midnight in case they needed to operate the next day. I got another CT scan and doctors were worried that the size difference of my small intestine was 4 times on either side of the blockage. The surgeon who everyone said was amazing was out of town over the weekend and not due in till Tuesday 1/20.
1/16-1/17: I was feeling a little bit better as the steroids helped reduce the inflammation and the lack of food helping reduce the buildup in my small intestine. I made sure that I was walking around a lot and staying as active as possible.
1/18: They allowed me to have some blended soup and cream of wheat along with the clear liquid diet which tasted amazing. They also penciled me in to have small bowel resection surgery on 1/20 which by then I was ready for.
1/19: Back to clear liquids.
1/20: Finally spoke with the surgeon about the operation, he said that it would take about an hour and a half, could probably do it laparoscopic and that due to the size difference between the 2 parts of my small intestine I would probably have a temporary ileostomy. They wheeled me to the operating room and put me under. I woke up in some pain, with a tube through my nose to pump my stomach and a catheter. They had me hooked up with morphine that would release every 8 minutes if I wanted. The surgery went very well; he was able to attach the 2 parts allowing me to get away without an ileostomy. The amount of pain I was in really wasn’t as much as I expected. I was in pretty rough shape that evening and night, they allowed me to have some ice chips to keep my throat feeling ok. The worst pain was from the tube running down my throat, the incision didn’t hurt at all but when gas moved through my ileum it hurt a bit.
1/21: I walked around a bit, got the catheter out but was still limited to ice chips. I had not had a bowl movement or passed gas yet and was still having suction on my stomach. There was some pain on the walks as gas moved through me, and it hurt like a bitch to cough.
1/22: I was allowed to have clear liquids, got the tube taken out (so I could finally breathe, yay!) and increased my mobility. I finally passed gas and had a bowel movement (mostly liquid) and got to eat real food for dinner! They also took out the morphine pump.
1/23: I ate 3 small meals, got my IV taken out and kept walking around the hospital as much as I could.
1/24: I was discharged from the hospital and went home; I ate real food at home for lunch and dinner and had ensures for snacks. All of my bowel movements were only liquid. I weighed myself and I lost another 10+ pounds in the hospital, even with clothes on I was down to 113.8 lbs.
1/25: I kept eating a lot but everything went right through me, I didn’t have a ton of energy since I was not absorbing and of the nutrients I was taking in. I started taking probiotics and by dinner realized that I should probably go to a bland diet of bananas, rice, applesauce, toast, potatoes and chicken (along with ensure to get nutrients).
1/26: The diet change worked and I had the best looking bowel movements that I have had in years.
1/27-2/1 (today): Recovery continues to go well; I have put on a good 6 pounds and feel good. Digestive wise I feel better than I have in several years and am eating as much as I can. I am walking a couple miles per day trying to get back into shape for work. I still need to put on a bunch of weight but am sure it will come as I continue to feel better.
Again, thank you everyone who posted in here. I spent many nights reading everyone’s comments and it really helped me get through the whole process.
 
Ok, had my reversal done Jan 27th - plumbing works great but since this was my 4th surgery in one year my entire gut is a hernia, so about 6 plus months I will have to go back under the knife and get that fixed, but the plumbing went good My new diet additives (MiraLax) has saved my life! Those who are having problems with constipation or blockages due to Crohns as I was - this is the best thing I have ever done!
 
Ok, had my reversal done Jan 27th - plumbing works great but since this was my 4th surgery in one year my entire gut is a hernia, so about 6 plus months I will have to go back under the knife and get that fixed, but the plumbing went good My new diet additives (MiraLax) has saved my life! Those who are having problems with constipation or blockages due to Crohns as I was - this is the best thing I have ever done!
Glad to hear you're feeling better :) fingers crossed for continued healing!
If you don't mind me asking, what were your surgeries for? Also what were the time frame gaps like from diagnosis to each surgery?
I just recently had surgery on 23/12/14 though recovery has not been smooth and after speaking to my GI today, he seems to think I have a moderate/severe case of Crohn's. I'm just interested to see how quick it can recur. It seriously feels like I already have it back if that's even possible.

If anyone has any links to research on recurrence rates over time (including contributing factors) it would be very much appreciated :)
 
Diagnosed in 2004.

Abscess and drain in the summer of 2009.
-note, this was the first time I have ever fainted
-of course it couldn't be a crohns story without telling you I was on the toilet post-surgery when it happened :cool2:

Surgery in the fall of 2009, small and large bowel resection, surprise removal of abscess connected to pelvic bone and large bowel
- discovered allergy - morphine. Immediate nausea when I woke up, persistent vomiting while holding abdomen, was switched to another narcotic which had the same reaction. Other than wanting to sleep, I didn't feel major pain. Switched again to Tylenol.
- I walked a lot starting on day-2, with and without the catheter. When I was told that the more I walked the faster I would heal AND be discharged, I was motivated. I could not stand the hospital smell. I had a flavored lip chap that I constantly applied right under my nose to help mask the smell. The second worst thing about the hospital is how early the surgeon and team love to wake you up.
- Infection set in, staples were removed from top half of incision, wound had to be packed daily.
- Discharged day 7
- Second infection infection set in, bottom staples removed
- My scar is not as nice and flat as gemmfers...top and bottom of wound had to be re-opened and packed until healed so both areas caved in
- 2-months before getting the green light to go back to work after surgery because of infections
- When I have my next surgery, I'm hoping they can do a tummy-tuck at the same time and fix it :lol2:

remission for the most part since 2010, occasional flares but nothing to complain about! :drink:
 
Surgery Day (3rd June 2015) - Went to A-E as suspected appendicitis and went into surgery for this. In theatre they discovered inflammation on small bowel, which further damaged larger bowel; had 2 inches of small bowel and 1 inch of large. Went into recovery with oxygen, two drains, two IV's and an IDC.

Post op Day 1- Moved overnight to ward and spent day on bedrest, with morphine and tramadol.

Post op day 2- IDC was removed in the morning and started walking to toilet and back. One IV was also removed as well as drain. drinking nutritional drinks.

Post op day 3- Started on a liquid diet, mainly ice cream and jelly. Mobilising well and reduced pain killers to paracetomal and tramadol.

Post op day 4- Stuck with a liquid diet, but was allowed to eat rice krispies! bowels opened and just needed paracetamol.

Post op day 5- discharged home.:ysmile:
 
I'm sitting in hospital, awaiting my first resection after only 3 weeks diagnosis. Colonoscopy showed very narrow TI, and after a few days on steroids I was having fevers and looked septic. Went to emergency as per my specialists advice, and I've been here for 5 days. They will be removing 15-20cm ileum, caecum and section of ascending colon. I'm as concerned as I am looking forward to feeling some relief from the 6 months of agony! Thanks so much for all of your stories, it really helps to put things in perspective, and alleviate some of the isolation and stress xx
 
This was in 2012 so here we go:
I had issuses since 2002. Had couple of flares and never went to the doctor. So let's fast forward...

Went the doctor to get a note for work since I was feeling bad that night. :stinks: Was admitted on Oct.2nd and had a nice 3 day stay. Got out Friday cause I told them if they don't do it now let me out and I will come back lol. Went back on Monday to have surgery. Showed up at 0900 and they gave me the talk about what they were going to do etc. They gave me a shot to relax me, but I didn't really feel anything at all. Then I was wheeled into the O.R. and wide awake. Next thing I know I was waking up in recovery and coughing!! They think I have a blood clot and rush me to get an MRI. Meanwhile I was still coughing and having just had a foot of my large intestine a foot of small intestine and appendix out it was no fun at all. They get me back and tell me that it is not a clot, the Anesthesiologist dripped a few drops of fluid in my lungs (Yeah, I know right??!!) I was moved into ICU with oxygen, antibiotics and pain meds. After 24 hours I was moved to my room and allowed to walk. I knew that would be the only way out so I walked as much as I could just to show them I could. Bowels opened up on that day too. I was given a low residual diet and stayed for another day. Went home after those 3 days and put on percoucet (sp) and antibiotics and just laid in bed for most of the day. I went back to work November 6th...:ycool:
 
ENTheory

Almost the same thing happened to me. I went in for a colonoscopy to see how bad my TI was getting. GI doc took a picture & backed out. I wake up coughing. I see some yellow stuff on the pillow and ask about it. "Oh, you vomited during the procedure" They discharged me. About 2 hours later I go back to urgent Care/ER and a 3 day stay.

I'm going in this week for a surgery pre op conference

I wonder how often that happens.
 
my surgery story

I have had two resections. The first was in January of 2007 and the second was in June of this year in Pittsburgh. The first one was laparoscopic and went very well from what I remember. Went home after 5 days and was back to work in about 6 weeks. No problems and recovered just fine.
The most recent one was a fiasco of epic proportions. My local GI doc referred me to Pittsburgh because of the "better doctors" etc. even though the local surgeon who did my first resection was still practicing. So I went to Pittsburgh out of blind faith in my local GI doc.
Day 1- I am in pre-op having nerve blocks put in through my back. These are supposed to cut down the use of pain meds. I would later find out that they were not placed in the proper positions. As I am being wheeled to OR, I am being told "that I will not remember any of this". But I do. I remember someone trying to strap my legs down as soon as I was on the table. Someone else is jamming a mask over my face and trying to jam a hose under it. Lights out. The surgery took about four hours and I was in recovery for another four, mostly from uncontrollable pain. Remember those pesky nerve blocks ? Skip ahead to Day 3 - I am puking up green stuff . In goes the NG tube for the next couple of days. Now anyone who has ever been in this spot knows that this scenario usually means a blockage of some kind. But it is not until Day 7 that I am finally given a CT scan that does in fact show a blockage that may or may not have appeared during or after surgery. The surgeon tells me we have two options: wait for the blockage to resolve itself, or go back in and fix it that evening. I say yes, but surgeon changes his mind and surgery is not performed. He decides to "watch and wait". Meanwhile I am on a clear liquid diet all this time and am getting zero nutrition. I've asked several nurses and doctors about this. I am told that the stuff in my IV bag is enough to "keep me alive". Nice. Skip ahead to DAY 13. So now I've just been hanging around being very miserable. Gut pain, nausea diarhea,severe cramping, etc. Still on a clear liquid diet. Someone decides to put in a pic line and start feeding me from a bag. I get the feeling they don't quite know what to do with me except for "watchful waiting". So on day 16, I am finally discharged. I've not had solid food for 15 days and have lost 20 pounds from an original 170. Nothing has changed. Still miserable. I'm still on clear liquids, but am told to start introducing solid food at home. Skip ahead to today. A little over 7 weeks after surgery. I assumed that at some point I would start to feel better. I actually feel WORSE than before I had the surgery. I now have problems that were not there BEFORE the surgery. Nausea on a daily basis. No matter what I eat, within five minutes I am bloated and belching. Intermittent gut pain, accompanied by loud bowel sounds, in the same two specific areas. A feeling under my abdomen that something is swollen and moving around. Alternating constipation and diarhea. Had a CT scan and a Small bowel follow through within the last two weeks, and am told that "everything is fine". Except for the fact there is a large amount of stool in my colon. This showed up on both tests. Everything is not fine. Before surgery, my good days vs. bad days was about 50-50. Not great but I managed okay.
Now there are no good days.
 
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I had 36 inches removed from my small intestine on may 6. I was up and moving the next day and was emptying my bag on my own. Was supposed to be 3 to 5 days in the hospital. They said I couldn't go home until I was getting less than 1,000 ml out of the bag a day. Well that never happened I was averaging 3,000 a day. After 17 days they were at a loss so my doctor asked if I wanted to try to have everything hooked back up. I was a little worried as they said before that it was 3 to 6 months wearing my bag. She had never rehooked anyone this fast before but I was game. Had surgery on day 18 to have everything hooked back up. Worked great got out on day 21. Was sore for some time but I was bag free so I was 3 to 6 months ahead of the game. Playing in my first golf outing since surgery today.
 
Hi,
Had Crohn's for 52 years and had one exploratory and three small bowel resections all of which I just had one in March of 2015. My surgeon said I will be able to eat everything after I first starting with a low fiber diet and eating small meals. All of this I do know but now it is five months later and I still have pain in the same area below the bellybutton and to the right. I went to my GI doctor and he had me take a cat scan with an oral contrast. The test came back and showed that there is still inflammation and a narrowing in the same area. How can that be? Now he wants to take a three way picture for a small bowel stricture. I am currently on Pentasa 2 capsules 4 times a day. My GI doctor says it isn't working and wants to put me on Humira. I do not want to go on this medication because of the side effects and the cost is very high without drug prescription for both no less. Thanks for listening and I am really nervous.
 
My surgery stories are as follows.
In 1980 had to have some of the sigmoid colon removed. When they took me off iv pain meds they gave me codeine. Unfortunately that is how I found out that it makes me sick to my stomach. Tests showed that where the incision was it had swelled up so I had to remain in the hospital a few days extra so they could watch that. Went home with the long scar like gemmafar's. If I remember right I was home from work for about 3-4 weeks and was in remission until 2007.

In 2007 I had a colonoscopy done that showed that the crohns was now where the small and large colon connect and was very close to closing so I went in on Halloween and had my surgery to remove that section which included the valve. The doctor went in just below my waist and its about 8 inches. He did a wonderful job of sewing it up as it is hardly noticeable. Went home after about 6 days. After 2 days home and I get a fever and am in pain so I had to go back to the hospital. They just watched me for almost a week and fever never changed. Then they found that I had an abscess so I had to have a drain put in. After a couple of days that plugged up. Then I was told that I had to have another surgery to find out what was going on. They found that there was a hole where the surgery site was so all that crap was filling me up. They had to take out all of the intestines and go thru them to check for any other holes and in doing so they found a couple of more slits they had to repair. I came out of that with 2 drains, the ng tube which I hate and they had to cut me open the same site from my 1980 surgery. So now my belly button is off to my right. I of course had an infection so they had to put me on 3 powerful iv antibiotics. Then they had to give me insulin injections. I was being fed intravenously. I was in the hospital this time for 3 weeks. When I went home my husband had to take care of the dressings from my 2 surgery sites and the 3 drain sites. My appetite was bad. I could not stand the taste of food that I loved. It took about 3 weeks for me to start eating a few things. The surgery sites took about 3 months to heal. Then it took about 2 years before I stopped seeing the physicians assistant who was not helping me find something that would give me control back. Wearing depends and not going out of the house was a very depressing time. I was finally able to see my GI doc who immediately put me on Humira and that was my wonder drug and gave me my life back.

Now the Humira stopped working and so we are trying Entyvio which I have only had 2 infusions so far. My next one will be on September 10th. I want to say I am seeing a tiny bit improvement but still hesitant to believe it.

The doctor who did my surgery in 2007 is no longer in town thank goodness. After this surgery I found out that he also did surgery on one of my husband's nephews and bungled that one also. So my advice before you settle on a surgeon check and triple check with others to make sure that you will be in good hands.
 
Thanks for sharing your story with me. I get my third entyvio This week. So far nothing. I really hope it works as this is the 5th drug we tried. If I know I have something to do in the afternoon I just don't eat all day as food doesn't stay down long. I'm glad Entyvio is working for you . I hope it's your wonder drug. Good luck.

Don
 
Hi Grandma McB,

I am so sorry for all you have and are going through. Hope you are going to feel better real soon. I am so afraid of Humira, my doctor at first wanted to put me on it but I told him no. Don't like side effects. We know a woman who has had bad side effects and what I read about it don't like them. I am glad that you feel a little better and keep that positive outlook. Hope the Entyvio will work well for you this time. I will think of you when September 10th comes because I have to go to my GI on the same date. He is a great GI and I feel very comfortable with him. Now I have to have an enzyme test for the medication he wants to put me on it's called Mercaptopurine. Side effects aren't that great either. We are strong women and all of us are when you have Crohn's Disease. Thank goodness we have a forum like this one to go to and talk with each other. Keep fighting and stay strong.

Dx Crohn' 1963, Pentasa,2/4xper day,maybe Mercaptopuring, multi vitamin, vitamin d3 2000 IU, DHA 600mg, CQ10 100mg, b12 shots per mo.
 
Well almost recovered from my surgery. About 18" taken out including the TI. We did it the "hard way". So about a week in the hospital. I was counting up my hospital stays the last 3 years. I'm at 4 admits with 3 being a week stay.

Surgeon was great. He was super confident going in. The pre op conference I'm drilling him w/questions and he's like no problem. Day of he sees me in the pre op part of the OR. We chat a little. Then I was awake during the safety talk in the OR. That was pretty interesting. All the team was in there as they covered what they were going to do. Then I wake up in Recovery room. About the only thing I remember there is the nurses' name. (Liz) I guess the surgery was about 4 hours. They cleaned up some fat tissue around the gall bladder. (that was removed 3 years ago

Then down to my room. Which wasn't pleasant. For the 2nd time in 3 years they did not send any morphine to the room. So I'm in tremendous pain. Scale of 1-10 it's a 10.1. Finally got that straightened out and I'm good to go. I had a tremendous (m)nurse the first night. Let me work at my own pace to stand up. Got the morphine flowing. Just a very caring murse.

Was up and walking the next day. But the bowel didn't wake up until about the 4th day or so. Couple people came to visit early on. I still was drifting in/out as I was trying to converse. I apologized later

First day out I went into work. I lasted about an hour. LOL. And built up from there. a month out my incision hurts a little. I overdid it this last weekend and paid the price on Sun/Mon. a little oxy cleared that right up. :thumright:

Is anybody doing a maintence drug after surgery? My surgeon was talking about Humira or remicade. Not totally on board with either. Still need to talk to my GI doc about those options

Thanks for all the stories. it really helped me prepare
 
Hi Scrapr,

I had surgery March 12,2015 this is my fourth surgery small bowel and I had such pain above the bellybutton and below and to the right. Crohn's has been with me for 52 years since I was 14. I had surgery in 1963, 1977, 1987 and now. Back then I was on pred., Azulfadine, a med. called Hexadriyl and b12 shots. Now they have come a long way with many new medications.

I was in the hospital for 7 days and like everyone else had morphine, for pain which helped alot. One days after had liquid for breakfast, lunch and dinner. That was terrible. I only ate the ice cream, jello, and apple juice. The broth is horrible, did not drink coffee.

The things that bothered me the most was the bathroom, and when they came to take me for walks in the halls. I couldn't stand straight and that makes everything more harder. My nurses were great. I have a great surgeon and GI doctor. The only thing I remember is when I was on the operating table and then back in my room. When the nurses put me back in my bed it was like they bounced me into it and I gave the biggest yell.

Keep well

_________________________

Dx Crohn's 1963, Pentasa, maybe Mercaptopurine, multi vitamin, vitamin d3 2000IU, DHA600mg, CQ10 100mg, b12 shots
 
I was diagnosed with ileal Crohn's 4 and 1/2 years ago, and have been on humira for almost 3 years. This summer I began to relapse, was hospitalized in August with a small bowel obstruction, started on high dose prednisone and methyltraxate in addition to humira, and referred for surgery.
The surgery was done Wednesday, an ileal resection and removal of the ileoceccal valve and appendix. It was done laparascopically, so I have one incision about 3 " long and two that are < 1" each.
I was told I was somewhat higher risk due to my age (I am 62), so they stopped all my immunosuppressants prior to surgery.
First day I had dilaudid via pump for pain control, IVs in both hands, and a catheter. I could have ice chips and get up in the chair. I really don't remember much of that day, because of the narcotics.
Second day, clear liquids, catheter out, and walking in the hall with assistance. Started transitioning from dilaudid to percocet for pain.
Third day soft food and much to my surprise, I was offered the chance to go home late in the day!
Fourth day (today) small soft BM, pain being managed on percocet every 4 hours with zofran for nausea. Waking up is the worst, as my percocet has run out. Tomorrow I probably will have the pills by my bedside, take one and wait 30-60 minutes before even trying to get out of bed.
I was lucky to have such an easy course, but I wanted to share my story because it was so helpful for me to read other people's stories.
Based on what I have read, I am planning to stay on a very low residue diet (8 gms of fiber a day) for the first 4 weeks. My GI doc wants to restart all my meds in 6 weeks in hopes of preventing another relapse.
 
my surgery story

I have had two resections. The first was in January of 2007 and the second was in June of this year in Pittsburgh. The first one was laparoscopic and went very well from what I remember. Went home after 5 days and was back to work in about 6 weeks. No problems and recovered just fine.
The most recent one was a fiasco of epic proportions. My local GI doc referred me to Pittsburgh because of the "better doctors" etc. even though the local surgeon who did my first resection was still practicing. So I went to Pittsburgh out of blind faith in my local GI doc.
Day 1- I am in pre-op having nerve blocks put in through my back. These are supposed to cut down the use of pain meds. I would later find out that they were not placed in the proper positions. As I am being wheeled to OR, I am being told "that I will not remember any of this". But I do. I remember someone trying to strap my legs down as soon as I was on the table. Someone else is jamming a mask over my face and trying to jam a hose under it. Lights out. The surgery took about four hours and I was in recovery for another four, mostly from uncontrollable pain. Remember those pesky nerve blocks ? Skip ahead to Day 3 - I am puking up green stuff . In goes the NG tube for the next couple of days. Now anyone who has ever been in this spot knows that this scenario usually means a blockage of some kind. But it is not until Day 7 that I am finally given a CT scan that does in fact show a blockage that may or may not have appeared during or after surgery. The surgeon tells me we have two options: wait for the blockage to resolve itself, or go back in and fix it that evening. I say yes, but surgeon changes his mind and surgery is not performed. He decides to "watch and wait". Meanwhile I am on a clear liquid diet all this time and am getting zero nutrition. I've asked several nurses and doctors about this. I am told that the stuff in my IV bag is enough to "keep me alive". Nice. Skip ahead to DAY 13. So now I've just been hanging around being very miserable. Gut pain, nausea diarhea,severe cramping, etc. Still on a clear liquid diet. Someone decides to put in a pic line and start feeding me from a bag. I get the feeling they don't quite know what to do with me except for "watchful waiting". So on day 16, I am finally discharged. I've not had solid food for 15 days and have lost 20 pounds from an original 170. Nothing has changed. Still miserable. I'm still on clear liquids, but am told to start introducing solid food at home. Skip ahead to today. A little over 7 weeks after surgery. I assumed that at some point I would start to feel better. I actually feel WORSE than before I had the surgery. I now have problems that were not there BEFORE the surgery. Nausea on a daily basis. No matter what I eat, within five minutes I am bloated and belching. Intermittent gut pain, accompanied by loud bowel sounds, in the same two specific areas. A feeling under my abdomen that something is swollen and moving around. Alternating constipation and diarhea. Had a CT scan and a Small bowel follow through within the last two weeks, and am told that "everything is fine". Except for the fact there is a large amount of stool in my colon. This showed up on both tests. Everything is not fine. Before surgery, my good days vs. bad days was about 50-50. Not great but I managed okay.
Now there are no good days.
I wanted to give an update on "My Surgery Story".
First, I want to say that I hope I have not discouraged anyone who really needs it, from having surgery. That was not my intention. Everyone is different and as I said in my original post, my first surgery in 2007 was very uneventful. I recovered quickly and was back to my old self in 4-6 weeks.

So now I am about five months out from my surgery on June 5th of this year.
There has been a little improvement, but not much. I have regained 10 of the 20 pounds that I lost, but can't seem to get the rest back. The two biggest post op problems remain a continuous bouncing back and forth between constipation and diarrhea which no one can figure out. The second is the almost constant backing up from the colon into the small bowel due to my ileocecal valve being gone. I'm pretty sure this is why I feel sick most of the time. So just to recap, life before surgery : not great, but not horrible. I could mostly do whatever I wanted. Life after surgery : I have watched my world getting smaller and smaller until I am lucky to leave the house two or three times a week without an "accident".

Here's a funny story. Last week I was scheduled to see my GI doc in Pittsburgh, which is a two hour drive from my home in NW Pa. Woke up the day of the appointment with the runs and knew I could not make the two hour drive. Called to reschedule for what I hoped would be a visit maybe the following week. I was told the next opening was in JANUARY. These are the little irritations that have made me lose faith in our medical system.......

Sorry to sound so bitter and pessimistic, but that's how I feel.

Once again, I want to say that I am not trying to discourage anyone who really needs it, from having surgery. That is not my intention. Everyone is different and as I said in my original post, my first surgery in 2007 was very successful. And yours probably will be too............
 
Hope you are doing a little better. I too have been having on and off diarrhea since my surgery 7 weeks ago, which at this point I think might be dietary. Like you, I find it very discouraging, as I desperately want to have a little fresh fruits and vegetables to make my meals more palatable. Have you considered whether or not diet is part of your bowel issues?
 
Well here is my story....I medically retired from the military (un-related to the Crohn's), so the military really messed me up. I had to have a resection in 2014 of my small intestine and part of my colon. The VA did the surgery and I still have the short gut and my weight fluxes quite often. I had 18 inches of the small intestine removed and not sure on the colon. They took care of the UC for now but still have symptoms and have to take Remicade and various medicines to keep this in what little control I have left. I feel like I am failing and my body is taking control of me and it quite often limits what I can do. Keep your head up and push on.
 
In 2010, I had some tdsfs ordererd by my GI. The stuff they gave me to drink took exceptionally long going through my system. They sent me to the hospital for a short stay. Details are a little fuzzy. My GI sent me to a specialist who tried to do a colonoscopy but I ended up getting sick. Because of that, I was admitted into the hospital. My wife insisted that they transfer me because of the poor service at that hospital. There was a nursing shortage at the first hospital at the time. I was released to go home. They put me on TPN because of a bowel obstruction. My body didn't like the TPN and I ended up in the hospital with pancreatitis. They did a bowel resection a week later. They tried to get me up to walk the next day but it took another day because if pain. I had a minor infection at the surgery site. Siixteen days after the surgery, I was released.
 
I have had 3 major bowel resections - 1982, 1989 and 2015.

The surgeries in the 80's were barbaric because narcotic pain relief was highly stigmatized at the time, especially for young people. I had my surgeries at that time at NYU (now Langone). When I think of how I suffered from post-op pain, I am still disturbed by it to this day.

My recent surgery at Mount Sinai Medical Center was much more humane. Anyone having this surgery today should have an epidural afterward. You feel no pain for the first two days, until they start to wean you off the Fentanyl and Dilaudid. What a godsend.

After 3 resections, and now in my 50's, chronic pain is a major issue. Humira works in a limited way. A Pain Management doctor becomes essential after 35 years of this disease. I wish I could paint a more rosy picture. There are times when I feel good. Most other times I feel discomfort, fatigue or some degree of pain. Most people don't understand the degree of suffering. That can make you angry - don't let it. Just focus on caring for yourself. Stay away from fiber and saturated fats and too much sugar. Drink tons of water.

Sorry to say it does ravage you after a while.

Good luck and God bless.
 
Thank you and I feel the same about everyone here, that is why I joined the forum. I feel I have so much info to offer. I am up early because I can't sleep due to pain.

Good luck to all.
 
One resection May 27th 2013. It was a double resection of the terminal ileum. Got crohn's through food poisoning. Many died from what I ate as was reported on the internet back in the year 2000 but was never reported in the year 1997. It was April of 1997 I got poisoned and nearly died after being rushed to emergency. They said the poison destroyed parts of my intestines. My bowels perforated in December of 2005 along a stretch of 9 inches. They were going to do surgery but instead I got cipro and flagl then then sent me home 3 days later. I lapsed into a coma and went to emergency. I switched GI's in 2013 and the new GI instantly said you have to have surgery. The surgeon said it was a miracle I lived to the surgery date. I was a world class olympic athlete prior that was probably the reason I survived. Been in total remission going on 3 years and never on any drugs since my operation.
 
So glad to hear that you made it through all those scary moments. Dealing with Crohn's is not fun. My first surgery for a resection was back in 1980. I was in remission with no meds at all until 2007 when I had to have surgery as the colon was narrowing and was close to having an obstruction. I hope you are able to stay in remission as I was. Unfortunately that is not the case now. Wishing you many more years in remission!
 
My 19 son had an illeocecal resection on March 23, 2016. He was initially diagnosed with Crohns July 2015 and was put on a step down medical regimen (remade, Imurun, pro biotics and pentasa). Four inches total were removed which included his Terminal ileum and his appendix. Is a college student so reluctantly agreed to have surgery (he was hospitalized in February for five days due to a partial structure. He vomited so violently he tore a hole in his esophagus which made all the doctors anxious!). He did NOT want surgery until after school was out but the surgeon insisted.

Day one: Two hour surgery (laparoscopic) - back in room with morphine pump, IVs and a catheter. Got up and walked two laps

Day two: Catheter removed. Slept often but managed to walk 20 laps.

Day three: Morphine pump taken away. Started to eat liquid food. Walked up to 40 laps (made everyone who went with him dizzy). Had a BM and passed gas.

Day four: Ate soft breakfast foods and was released from hospital.

Day five: Rested a bit at home and left for college

Day six: Back to school. Walked very slowly and hunched over. Could not lift anything above five pounds. Girlfriend had to give him an anti coagulant shot each day to keep blood clots from forming but HE DID IT!!
 
I think girlfriends for teenagers supersedes any medications or surgeries!! He seemed to heal in front of our eyes when she came to visit :)!
 
I came home today after my ileocecectomy. I had two sections of strictures removed. The worst stricture section was 15cm, and the other section, which contained 3 strictures and was overall unhealthy was 65cm. Everything left was healthy intestines. The surgery was supposed to be hand assisted laproscopic, but once the hand assisted opening was made, they realized the laparoscopic tool holes would not be needed, so I have a single 3 inch incision at my belly button.

Day 1: 2 hour surgery started at about 9:45am. I was given a pain cocktail before surgery. The rest of the day was spent in the bed recovering. I was on a constant ketamine IV for a base pain reliever with IV Tylenol every few hours and Dilaudid as needed every 3 hours. The worst pain was not from the incision, but from gas pressure in my shoulders and back. Clear liquid diet was started this night.

Day 2: They removed my catheter fairly early this morning and had me up and walking around. The Dilaudid did wonders for me as I began my activity and it helped me sleep, as I couldn't remain asleep due to the pain on just the ketamine and Tylenol alone. I was in a good bit of pain all day but was able to have a semi bath with the assistance of my wife. Remained on clear liquids.

Day 3: This was my turn around day. They took me off of the ketamine and Tylenol in favor for oral Norco (hydrocordone) 7.5 mg every 4 hours as needed with the Dilaudid still an option every 3 hours. My walking activity level increased imensely, and they put me on a soft diet at lunch. I had 5 BMs this day. Pain levels dropped a lot this day, and I was able to sleep through the night with only one norco when I went to bed. I was informed I'd be released the next day if I continued tolerating food.

Day 4 (today): I woke up in very little pain, but was very sore when I got up. I took one Norco after getting up. I had breakfast and lunch and was released around 1:30 pm. I've had two Tylenol this evening. BMs are still numerous and very loose, but this is to be expected at least for a few months as my intestines heal. I'm eating well and have a decent appetite. Feel free to ask any questions.
 
I came home today after my ileocecectomy. I had two sections of strictures removed. The worst stricture section was 15cm, and the other section, which contained 3 strictures and was overall unhealthy was 65cm. Everything left was healthy intestines. The surgery was supposed to be hand assisted laproscopic, but once the hand assisted opening was made, they realized the laparoscopic tool holes would not be needed, so I have a single 3 inch incision at my belly button.

Day 1: 2 hour surgery started at about 9:45am. I was given a pain cocktail before surgery. The rest of the day was spent in the bed recovering. I was on a constant ketamine IV for a base pain reliever with IV Tylenol every few hours and Dilaudid as needed every 3 hours. The worst pain was not from the incision, but from gas pressure in my shoulders and back. Clear liquid diet was started this night.

Day 2: They removed my catheter fairly early this morning and had me up and walking around. The Dilaudid did wonders for me as I began my activity and it helped me sleep, as I couldn't remain asleep due to the pain on just the ketamine and Tylenol alone. I was in a good bit of pain all day but was able to have a semi bath with the assistance of my wife. Remained on clear liquids.

Day 3: This was my turn around day. They took me off of the ketamine and Tylenol in favor for oral Norco (hydrocordone) 7.5 mg every 4 hours as needed with the Dilaudid still an option every 3 hours. My walking activity level increased imensely, and they put me on a soft diet at lunch. I had 5 BMs this day. Pain levels dropped a lot this day, and I was able to sleep through the night with only one norco when I went to bed. I was informed I'd be released the next day if I continued tolerating food.

Day 4 (today): I woke up in very little pain, but was very sore when I got up. I took one Norco after getting up. I had breakfast and lunch and was released around 1:30 pm. I've had two Tylenol this evening. BMs are still numerous and very loose, but this is to be expected at least for a few months as my intestines heal. I'm eating well and have a decent appetite. Feel free to ask any questions.
Your first paragraph mentioned laprascopic surgery. I am supposed to go for a second opinion concerning surgery on a hiatal hernia. I had read they can do laprascopic surgery for a hernia. My gi told me that with my history of fistulas it would be more complicated. Anyone have experience concerning this?
 
My experience in 2011 of emergency open surgery (right hemicolectomy) for a bowel resection to fix a walled off perforation, abscess, ovary moved out of place, bowel stuck to bladder and abdominal wall:

- surgery, with epidural. Horrific pain upon wakening that was controlled by increasing epidural

- stayed in hospital around 5-7 days (can't remember exactly), basically felt loads of pain the whole time. Was highly resistant to walking, took me days to move from my bed to chair. I had to be wheelchaired out the hospital. I just felt so scared of my wound ripping open. Refused also to eat - no appetite, I came out of surgery weighing 6 stone (38kg).

- the second week after surgery I spent at home. I was walking and eating but had terrible joint pain from the weight loss. The first time I left my house for a walk I felt like I would collapse due to how long it had been since I had actually been walking properly

- 3 weeks post surgery I went Christmas shopping which was manic and tiring

- 4 weeks post surgery I went on holiday to London which was really busy. I felt very well except when I had to run for a train and felt abdominal discomfort

- 5-6 weeks post-surgery I was going out clubbing and felt the best I had felt in my ENTIRE life!!!! From there on over the next year I had so much energy I was working 6 days a week sometimes 7 with no exhaustion and no abdominal pain or discomfort whatsoever.
 
Here is my story. It’s a bit long, but broken out. I first gave a summary of each month from the start of the flare to the day of the surgery, March 22, 2012. Then provided a summary of each day I was in the hospital and then for the days since I’ve been home. I feel great and hope that I feel this way (or better) for a long time! I hope that others have been helped by surgery or if you haven’t had it yet I hope that you find relief if you chose to have surgery! :)

August 2011: Stomach pain and cramps started off and on. They would flare and be severe, causing me to be nauseous and often throw up from the pain. After this happened a few times in early August, I went to the ER and I was admitted on the 15th. I was admitted and put on a clear liquid diet with an IV and steroids. I felt better by the next day; I believe really because I hadn’t eaten anything. I was released on the 17th. Even on Prednisone, I ended up with severe stomach pain and vomited several times on the 25th. I saw my GI a couple days later and she ordered an upper GI and small bowel series. She wanted to see if there was any narrowing prior to a pill cam.

September 2011: Had the upper GI and small bowel series in early September. It did show narrowing at the end of my small intestine, so the pill cam was decided against as it was feared it would get stuck. Had days throughout the month with stomach pain and cramps.

October 2011: October was actually fairly uneventful. I met with a different GI who was covering for mine while on maternity leave. He hinted then that surgery would probably be likely. However, he said he would understand if I wanted to wait for my regular GI to return to have a colonoscopy and discuss the surgical option further. This is what I chose…although I’m not sure now if that was the best idea ever.
November 2011: Pain, cramps, and bloating started to get worse and occur more frequently. At this point I realized that surgery was probably a necessity; however I had yet to talk to my GI about it.

December 2011: December was worse than November. I didn’t normally make it a week without being in severe pain. There were many days I had trouble getting out of bed. Often this happened on weekends (most likely because I tend to eat more on weekends) so I managed to make it to work during the week; or at least work from home.
January 2012: Finally was able to see my GI and tell her about everything I had been going through for the last few months. I was actually having one of my bad days during the visit. Although she was sympathetic, the only thing she did was write me a prescription for Tylenol 3, an anti-nausea med, and told me to schedule a scope. I understand that any GI would want a scope, but looking back I wish she had done something else then. January was by far the worst. I don’t believe I had any pain free days. I just had days that had less pain and those were the days I would try to get everything I needed to done. I’m lucky that manager and team are so supportive as I was able to work from home on several occasions. I went to the ER on the 5th after trying to prep for a colonoscopy; I obviously didn’t get that scope. About half way through the prep I vomited it all back up. I don’t think any of it really ever got through me. I spoke to the GI the next day and said I would schedule one once I felt better; I never did call back and I’ve never heard from here. The ER gave me a couple bags of fluid and a few shots of morphine. The morphine didn’t really seem to do much, but I think the fluids helped. They told me after the first bag I was still severally dehydrated. They did basic x-rays which just showed a bunch of gas in my intestines. I lost about 15 pounds in January and my pants were still tight because I was so bloated; even though I was barely eating. I decided that I wanted to go to see a GI with more expertise and spent the entire month trying to get an appointment at Mass General. I went back and forth between them and my PCP’s office for the referral. My doc’s office would say they sent it, Mass General would tell me they didn’t have it. Finally after weeks of this, Mass General finally got everything they needed and I was finally able to schedule a consult…for March 20th! GRRR…I feel like I’m dying and they tell me I have to wait 2 months just for a GI consult….

February 2012: Went back to the ER on the 6th and again was admitted. I wanted to be admitted, I was hoping this time they would do more and that the doctors could finally figure out what was going on with me. Again I was put on clear liquids, given fluids, and put on steroids before I left. During the stay they did a MRI and colonoscopy. It was a good thing I felt a bit better by the 7th as I had to lay on my stomach for the MRI after drinking 3 bottles of barium. They did x-rays for about 20 minutes and then injected an IV contrast and then did more. The GI on call at the hospital then wanted to do a colonoscopy after the MRI as he said there was definitely narrowing and they wanted to determine the extent of the disease. I was supposed to have the colonoscopy on the 8th; however I couldn’t get down enough of the prep. They had me using GoLytely; which I had never used before. That was horrible…it was like horrible salt water that made me very nauseous. So, the next day when the GI docs came back to talk to me, I asked if I could be switched to Miralax with Gatorade. They agreed to let me change the prep and I got through that later that evening and was able to have the scope the next day. After the scope, I was told that although my colon looked good and they were able to get through the ileum, they could definitely see narrowing in the end of the small intestine and recommended I speak to a surgeon at Lahey Clinic (I later cancelled my appointment with Mass General). In order to speak to a surgeon there, I first had meet with a GI specialist. I was released that day and waited for the GI’s office to contact me to set up an appointment. They called the next day and I got an appointment for the following Tuesday! I was really excited about that. After meeting with the specialist and after he got the MRI and colonoscopy results; he said that I definitely needed surgery and that the Colon and Rectal Surgical team would be contacting me shortly to set up a surgical consult. They called the next day and my surgical consult was scheduled for March 2nd. I spent the rest of the month eating mainly liquids trying to keep myself out of the hospital until I could get surgery as I was pretty much out of sick time by this point.

March 2012: Consult with surgeon went well. He agreed with the GI that surgery was fairly necessary. I believe he thought I was going to go home and think about it, but I told him I had already decided I wanted the surgery as I couldn’t live like I had been anymore and I would rather have it sooner rather than later. He was able to squeeze me in three weeks later. I was scheduled for a laparoscopic ileocolic resection for March 22nd. I was nervous and relieved all at the same time. I was hoping that after the surgery I would finally start to feel better, however nervous about the surgery itself as I had never had surgery before. Before the surgery I was down about 20 pounds. I managed to slow the weight loss by eating mainly liquids. I ate a lot of jell-o, popsicles, Italian ice, noodle soup, and I ordered Ensure Enlive on-line since it’s not available in stores (at least not in my area and I had been given these in the hospital the two times I was admitted). The surgeon ordered blood work and a CT scan before the surgery. I went in 2 weeks later for the CT and for the surgical pre-op. The pre-op was fine. I had an EKG and they asked me a bunch of questions. For the CT I had to drink 3 more bottles of barium. I felt fine at the time; however it made me feel horrible within a couple of hours. I actually had trouble making it home, with traffic it took me about an hour and 15 minutes. I took an anti-nausea pill when I got home and slept until the next morning. I had to do a full prep the day before the surgery. Since I had so much trouble getting a lot through me if I had eaten any solid foods, I completely stopped any solid food 2 days before the prep. I was able to do the prep with no issues (again Gatorade and Miralax).

March 22nd: I had to be at the hospital by 9:45 and my surgery was scheduled for 11:30. I was brought into the surgical prep area around 10:15 – 10:30. The nurse asked me a bunch of questions, the IV was started, and the surgeon came in and made marks on my stomach of where potential incisions might be and possible stoma (I was not happy about that). They also put a thing for nausea behind me ear since I had never been under general anesthesia, however both my mom and sister get nauseous from it so they decided to be safe than sorry. They told me to say bye to my husband right before they started the anesthesia. That’s the last thing I remember, I don’t remember them wheeling me down the hall or anything to the OR. I woke up several hours later to my husband and nurse yelling my name. I was eventually able to complain about pain especially in my back and they gave me more pain meds and helped me roll a bit to my side and put pillows under my back to keep my on my side. My two hour surgery had turned into five. Not only did I have the ileocolic resection, I also had a rectosigmoid resection. I had a fistula from my ileum to my rectum and another between my ileum and cecum. They removed the last part of my small intestine, ileum, appendix, top of my colon and a piece of my rectum. I also had severe fissures, some of my intestines were fused to my pelvic wall and they had to call an urologist in as they thought my right ureter might be involved. A ureter stent was put in for the surgery; however it didn’t need any surgical intervention.

March 23rd: I woke up early (around 5 AM I believe) and in less pain than I was expecting. I was still in recovery as there was no room available for me yet. I asked the nurse if I could get up at all…the surgeon had told me to try and get up as soon as possible. She said we would start with a chair to make sure sitting up didn’t make me sick. I realized at that time that I had a catheter and a surgical drain. Getting up wasn’t pleasant, but definitely not nearly as bad as I thought it would be. I had a pain pump (PCA), which I could push every 7 minutes if needed. Once I was in the chair and sitting I noticed I could go longer than 7 minutes before I really had any discomfort. When the surgeon came to check on me, he was impressed that I was already sitting up (reclined, but out of bed) and said I looked really good for someone that had gone through a major surgery less than 24 hours ago. My mom and sister came to visit that day and I wanted to get up and walk before they got there. The nurse helped me up and walk around the nurse’s station. I then got back in the chair and waited for my visitors! It was hard to stay awake. I’m assuming between the pain meds and the surgery, my body just wanted to sleep. I did however get a regular room about mid day. I went for another walk (after getting help from a nurse to get out of bed) with my mom and sister down the hall and back. Later that night I went for a third walk with my husband when he got there; again just down the hall and back. Overall, I thought for the day after surgery I felt pretty good.

March 24th: I felt even better on this morning. I was a bit more awake and decided that I would try to go longer intervals without hitting the PCA. I slowly extended it through the day. I had a lot of visitors since it was Saturday, my mom and dad, sister, brother, brother’s fiancé, and my husband! I loved having so many people as it kept me distracted. I went for walks with different people throughout the day. I was slow, but I got up and went for six walks throughout the day. I did however cough a little as I was falling asleep at one point and that was a bit miserable. My husband was there and tried to hit the PCA as quickly as possible…didn’t help at first. I had to wait to be able to hit it again. I had heard sneezing and coughing could be a bit rough; but I wasn’t expecting that! They also removed my catheter earlier in the day, so I now had to get up when I had to pee. Which was fairly ok during the day; however when I had to go in the middle of the night that was a bit more unpleasant. It took me a while to get out of bed (I had figured out how to do it on my own during the day), then had to unplug my IV machine, and slowly walk to the bathroom. It was also strange for the first few days as I had to concentrate in order to be able to go to the bathroom; which I had not expected urinating to feel different; but I was told later it’s normal and as long as I was going it was fine. I was shaking so bad by the time I got back in bed though that it was hard to not be upset. I hit the PCA pump a couple of times though (having to wait 7 minutes for each) and then was able to fall back to sleep. I also had gas noise and could feel it moving around so I was hopeful the next day that some would actually come out and I would be bumped from ‘sips’ of water to clear liquids.

March 25th: Woke up feeling pretty good. I went for at least one walk before my husband got to the hospital. I was also able to get cleaned up (couldn’t shower because of the drain), but I cleaned up and put on my own clothes! I was pretty excited about that, made me feel more human than those hospital ‘gowns’. :p I believe I went for seven walks total throughout the day. I went for longer walks than I had the day before and felt pretty good; although my back started to really hurt from being hunched over and I was using the pain meds less. I also had no gas; which upset me by the end of the day…this was probably the day I felt the most defeated. My night nurse was awesome though (basically a psychologist and nurse!) and talked to me for a while and made me feel a lot better!

March 26th: I was moved to clear liquids!! I woke up feeling really good although this was the most boring day as I didn’t have visitors all day like I had for the last few days. It was Monday, so everyone had to work. My husband came to see me before work, during lunch (he worked only a few miles from the hospital) and after work. I did get up and walk several times that day on my own. My focus for the day was to try and stand up straighter to try and help my back pain! I ran into the GI specialist and he could believe how good I looked! I felt really good too; and I hadn’t had any pain meds since about 3 AM…and that’s the last time I have had/needed any pain meds! :) Although I wasn’t able to go home like I wanted, the day overall went really well and I was told I would most likely be able to go home the next day.

March 27th: I was put on a ‘regular’ diet; which I actually felt a bit overwhelming. I just ordered a piece of white toast and still had some of the clear liquid items as I didn’t want to overdo it. I also had the drain removed. That was a bit odd feeling. Didn’t really hurt, but I could feel it as it came through my abdomen…very strange. I was released around 12 and my husband drove me home. I had read on one of the posts that someone recommended bringing a pillow to put between you and the seatbelt…that was genius! I didn’t even notice the belt and the ride home wasn’t as bad as I expected…bumps were a little uncomfortable; but overall it wasn’t too bad. I was finally able to shower when I got home since I no longer had the drain. I just had to let the water and soap run down my body and not put anything directly on them and then pat them dry. I was so nervous that it was going to hurt that my back was killing me by the end…I really could have used a prescription for anti-anxiety meds more than pain meds (I never even filled the pain med prescription for Percocet)!

March 28th – 29th: I spent the day at my sister’s since I have two small dogs that like to jump and crawl on me. I paced around her apartment several times throughout the day as the weather wasn’t great. Again I had some white toast; I was pretty excited by the 29th when I made it to 3 pieces during the day. I really wasn’t hungry when I first returned home. I think between my stomach shrinking and the fear in my head the food caused pain; I just wasn’t interested. I lost about 5 pounds within the first few days of returning home. I also spent the 29th trying to walk and stand straight to try and help the pain in my back. I had a huge knot about half way down more on my right side than left. It didn’t help that I also had trouble sleeping flat. Since in the hospital the bed reclined it wasn’t as much of an issue. It took me a few days though before I could lay completely flat and then a couple more before I could lie on my side.
March 30th – April 17th: The last few weeks have gone really well. My first bowel movement I compared to mud, however they are solid now. For the first couple of weeks, right before or during a bowel movement I had pain. I believe it was as stool was passing the rectosigmoid resection. However, there was no real pain any other time. I had times that I had some discomfort and still today I still get weird feelings sometimes. Most of my lower abdomen is numb though, so I think some of it is nerves. I asked during my surgical follow up on the 13th if I should be worried and they said only if it stays like that for more than a year. I asked about exercise and was basically told if it hurt not to do it. They said to stay away from ab specific exercises for 3 months; however I could run, bike, hike, etc….I think I’ll wait another week or so before running again, but I’m glad that they think I’m doing so well. He was even impressed that I could sit up so well without any pain. We are moving and I helped load the POD on the 14th; I did less than I normally would have, but more than I thought I was going to be able to. I also went back to work on the 16th. I had a follow up with my GI on the 2nd (I continued going to the GI I saw at Lahey) and he put me on a new maintenance medication. I am now on Apriso. He wanted me on something since I have had disease in my colon in the past. I have another follow up in 3 months when he will probably do blood work to check on my vitamin/mineral levels. I will also need another scope in about a year. If there are any signs of early inflammation he will probably suggest I go to a 6MP. My husband and I would like children though and he said the best time to get pregnant is after surgery since you are in clinical remission. So, if I’m pregnant in a year the scope will just be pushed out a little. :)

I think that’s it. I’m sorry for the book. The last six months have been a bit rough, however things have really turned around in the last few weeks, and I still can’t believe it’s been less than a month! I truly believe that things will just continue to improve over the next month or so as everyday is better than the day before. I spent so much time prior to the surgery stressing about it, and I think the pain the next day was less than what I was living with before. I am happy to answer any questions anyone might have so please feel free to message me if you have any questions!

Good luck everyone!!

3 month Update: Hi Everyone! I can't believe it's been a little over 3 months since the surgery, time certainly flies. I feel great! :) Had a small issue with peanuts, so I haven't eatten those again, but otherwise I seem to be able to eat anything I want....even fruits and vegetables. The bad part was that once I realized I could eat, I have wanted to eat everything! I have gained back 20 of the 25 pounds I lost (I was hoping to keep more of it off). I just finished my 3rd week of a workout program called Insanity. There is a lot of jumping. The first day or so my stomach was a little sore, but it doesn't bother me at all now. Although I haven't lost any weight on the program, I have definitely gained back a decent amount of muscle which I'm pretty excited about. I have a follow up with my GI on 7/12 and hopefully he says eveything looks good. At that point my husband and I will just have to figure out when we want to start to try to have a baby. :) Hope everyone is doing well and please feel free to message me should have any questions!

Year+ Update: I'm still doing really well! I'm currently 30 weeks (as of May 26th) pregnant with our first child and have felt great so far! I still can't believe how much things have changed in the last year. We are getting ready to welcome our little girl in late July/early August and couldn't be more excited! :)

2+ Year Update: Finally had a post-op scope to check how everything was doing. I was supposed to have one about a year after the surgery, but then I was pregnant so it was post-poned. Doctor said everything still looks great and there is still no sign of the CD returning. He said that was a really good sign and should hopefully mean I'll be in remission for a while. :) I'm so excited. We plan on trying for baby #2 soon, so I'm happy I got the green light from my GI! Hope everyone else is still doing well.
I know this is old and not sure if you're still on this site, but thank you so much for being so detailed. Added pillow for car ride to my list as i'm have surgery in less than two weeks. What is your update now?
 
And then Crohn's slammed into me again....that is this time it kind of snuck up and then clobbered me. On the 24th of November 2017 I came down with a fever for no reason. I did not feel sick at all, I just suddenly had a high fever, and hade the skakes with chilliness.
Now should something like that happen the order from my surgeon is to come to the ER at the hospital for a check up, so I did, and was immedateley admitted for further checks.
My blood work offered no explanation for the high fever that came and went over the next couple of days, while they ran me trough no less than 2 CT scans. This made them aware of a fistula coming from my rotten ileum, going trough my old cecum removal scar but had not penetrated the skin yet, but had formed a large abscess directly u under the scar. , So the recomendation was that I would undergo my 6th ileocaecal resection in 10 years, which would also remove the fistula and the abscess...

I had the surgery and recovered quite quickly from that ordeal with little to none complications. Actually it was the best recovery period I have ever had. But the fever persevered. So the scanned me from top to bottom with CT, MR and even ultrasound for the heart, and found one pocket of fluid in my abdomen, which they drained and within a couple of days the fever went away, but they never found anything in my blood work to explain it, but was given anti-biotics.

All in all I spent 3 weeks in hospital, and the worst part was actually the recovery at home. I was pain free after 3-4 days at home and stopped taking the pain killers. In hospital I had been on OxyContin and OxyNorm for several weeks and Tramadol/ tramegetic when I was released. So probably some kind of withdrawal symptoms that was messing with my head for a few days, but pulled trough.

Was in to have my surgery wound looked at today, and did some blood work, and it showed no infection in my body....

Else, the Doctors and Nurses at my local hospital are all angels. Top notch professional care, always with a smile, always ready with a joke, or to kick your butt when you need it the most, like when I was to lazy to get out of bed to get some excercise to help get my system going again...I was a little to fond of Netflix on wi-fi and all the pain meds made me drowsy, but those angel nurses can be scary when they need to! hahaha
 
I Got my surgery on the 21 of December the removed 1 foot of my small and large intestine they gave me pain killer infusion in my back i was in for 1-2 weeks recovering first 2 days was horrible but it did get better as time went the doctors told me to walk once i felt strong en of to do so so i did and every day i could walk better after i got home it took atleast a month or more to fully heal
 
My resection was a dream almost. I was in a lot of pain though not at first as I had an epidural beforehand. Immediately after surgery my worst source of pain was from all the tape on my back from the epidural being left there. I am kind of violently allergic to the glue on the tape.

I kept sliding down the bed and when I asked the nurses to help move me back up in the bed my back rubbing along the bed hurt so bad, I screamed. They thought it was my incision, but it wasn't. Once I got most of the tape removed and washed my back, things got better a lot faster. I was only stuck in hospital for 6 days.

To this day, the incision site is weirdly numb, which I was warned about, but I didn't expect that it'd feel so weird.

As scared as I was before the resection, it ended up being a breeze aside from the tape allergy.

I am a wuss and it was weeks before I could even glance at the scar (with the staples). I'm cool with other people's blood and guts or scars, but not my own. Now, due to the weird numbness the scar is easy to find, but I can barely see it.
 
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