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Crohn's Disease Forum » Surgery » Your Surgery Story


 
09-23-2015, 07:45 PM   #61
volleyball grandma
 
Join Date: Dec 2013
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.
09-23-2015, 08:28 PM   #62
scrapr
 
Join Date: Aug 2014
Location: Tigard, Oregon

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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.

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
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Lialda
09-23-2015, 10:47 PM   #63
volleyball grandma
 
Join Date: Dec 2013
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
10-03-2015, 12:53 PM   #64
normawood
 
Join Date: Apr 2012
Location: St Petersburg, Florida

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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.
10-27-2015, 05:48 AM   #65
jonnyzero
 
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Join Date: Jun 2014
Location: The North Coast, Pennsylvania
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............
11-20-2015, 07:46 AM   #66
normawood
 
Join Date: Apr 2012
Location: St Petersburg, Florida

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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?
01-28-2016, 07:56 PM   #67
Steve Mann
 
Join Date: Jan 2016
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.
01-28-2016, 11:55 PM   #68
ronroush7
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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.
03-05-2016, 10:03 PM   #69
Rmira
 
Join Date: Mar 2016
Location: Centereach, New York
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.
03-05-2016, 11:08 PM   #70
ronroush7
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Sorry for all the pain you are going through.

03-06-2016, 06:10 AM   #71
Rmira
 
Join Date: Mar 2016
Location: Centereach, New York
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.
04-13-2016, 10:07 PM   #72
Nicky Furlano
 
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Join Date: Apr 2016
Location: Markham, Ontario
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.
04-13-2016, 10:46 PM   #73
Grandma McB
 
Join Date: Jul 2015
Location: Eugene, Oregon

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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!
05-04-2016, 07:29 PM   #74
Dar
 
Join Date: Nov 2015
Location: Woodbury, Minnesota
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!!
05-07-2016, 02:25 AM   #75
Layla
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Location: New Zealand

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Amazing Dar! Good on the girlfriend too to give him those shots!
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Layla
Diagnosed with UC in 1994, CD in 2014, "IBS" in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion, probably sarting a medical trial soon

Previously on Remicade, Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
05-10-2016, 07:38 PM   #76
Dar
 
Join Date: Nov 2015
Location: Woodbury, Minnesota
I think girlfriends for teenagers supersedes any medications or surgeries!! He seemed to heal in front of our eyes when she came to visit !
07-16-2016, 09:41 PM   #77
hcrum87hc
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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.
07-16-2016, 09:54 PM   #78
ronroush7
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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?

09-02-2016, 03:35 PM   #79
eleanor_rigby
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Location: Cheshire, England, United Kingdom

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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.
__________________


History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
04-02-2017, 11:58 AM   #80
GI Jane
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Location: Yakima, Washington

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Here is my story. Itís 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 Iíve 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 havenít 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 hadnít 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 choseÖalthough Iím 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 didnít 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 donít 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. Iím 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 didnít get that scope. About half way through the prep I vomited it all back up. I donít 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 Iíve never heard from here. The ER gave me a couple bags of fluid and a few shots of morphine. The morphine didnít 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 PCPís office for the referral. My docís office would say they sent it, Mass General would tell me they didnít have it. Finally after weeks of this, Mass General finally got everything they needed and I was finally able to schedule a consultÖfor March 20th! GRRRÖI feel like Iím dying and they tell me I have to wait 2 months just for a GI consultÖ.

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 couldnít get down enough of the prep. They had me using GoLytely; which I had never used before. That was horribleÖit 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 GIís 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 couldnít 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 itís 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 Ė 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. Thatís the last thing I remember, I donít 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 didnít 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 allÖthe 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 didnít make me sick. I realized at that time that I had a catheter and a surgical drain. Getting up wasnít 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 nurseís station. I then got back in the chair and waited for my visitors! It was hard to stay awake. Iím 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, brotherís fiancť, 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 possibleÖdidnít 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 wasnít 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 itís 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 Ďsipsí 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 (couldnít 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 Ďgownsí. :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 dayÖthis 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 didnít 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 hadnít had any pain meds since about 3 AMÖand thatís the last time I have had/needed any pain meds! Although I wasnít 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 Ďregularí 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 didnít want to overdo it. I also had the drain removed. That was a bit odd feeling. Didnít really hurt, but I could feel it as it came through my abdomenÖvery 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 seatbeltÖthat was genius! I didnít even notice the belt and the ride home wasnít as bad as I expectedÖbumps were a little uncomfortable; but overall it wasnít 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 endÖI 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 Ė 29th: I spent the day at my sisterís 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 wasnít 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 wasnít hungry when I first returned home. I think between my stomach shrinking and the fear in my head the food caused pain; I just wasnít 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 didnít help that I also had trouble sleeping flat. Since in the hospital the bed reclined it wasnít 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 Ė 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, etcÖ.I think Iíll wait another week or so before running again, but Iím glad that they think Iím 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 Iím pregnant in a year the scope will just be pushed out a little.

I think thatís it. Iím 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 canít believe itís 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?
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