Share Facebook
Crohn's Disease Forum » Surgery » Your Surgery Story


 
06-23-2013, 06:08 AM   #31
Annimaz85
 
Annimaz85's Avatar
 
Join Date: Jun 2013
Location: Manchester, United Kingdom
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 !!
07-29-2013, 01:26 PM   #32
MikeEverson
 
MikeEverson's Avatar
 
Join Date: Jul 2013
Location: Canterbury, United Kingdom
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.
07-31-2013, 09:41 PM   #33
Gra
Senior Member
 
Gra's Avatar
 
Join Date: Apr 2012
Location: Perth, Western Australia, Australia

My Support Groups:
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
__________________
ABOUT: male, 66 yo, DX CD Terminal Ileum, 1-May-2012
MEDS-PREVIOUS: Prednisone: 6 months, stopped 19 Dec 2012. Imuran: bad reaction.
Humira: 5th Oct 2012 till July 2013. Worked well for me.
SURGERY: 6 Aug 2013: Ileostomy, Temporary stoma.
29 Oct 2013: takedown.
23 Jan 2015: in remission - my goal is to stay there.

"What doesn't kill us, makes us stronger!"

Last edited by Gra; 07-31-2013 at 09:51 PM. Reason: message was incomplete
08-01-2013, 03:32 AM   #34
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
· Stoma
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!
12-05-2013, 11:33 PM   #35
greeneyes1079
 
greeneyes1079's Avatar
 
Join Date: May 2010
Location: Maryland

My Support Groups:
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.
12-05-2013, 11:48 PM   #36
steelerfan
 
steelerfan's Avatar
 
Join Date: Feb 2011
Location: pittsburgh, Pennsylvania

My Support Groups:
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.
__________________
Dx Feb 2011
Just finished Prednisone after a year
125mg 6mp,
4g Pentasa 2x a day
Remicade every 8 weeks
Calcium/Vita D supplement

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

John 16:33
12-05-2013, 11:58 PM   #37
greeneyes1079
 
greeneyes1079's Avatar
 
Join Date: May 2010
Location: Maryland

My Support Groups:
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
12-06-2013, 12:00 AM   #38
steelerfan
 
steelerfan's Avatar
 
Join Date: Feb 2011
Location: pittsburgh, Pennsylvania

My Support Groups:
What was the recurrence rate? Any idea where I can get my hand on that study?
12-06-2013, 12:05 AM   #39
greeneyes1079
 
greeneyes1079's Avatar
 
Join Date: May 2010
Location: Maryland

My Support Groups:
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.
01-23-2014, 06:47 PM   #40
silverdiskdj
 
silverdiskdj's Avatar
 
Join Date: Jan 2014
Location: USA

My Support Groups:
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....
03-06-2014, 10:14 AM   #41
three crows
 
three crows's Avatar
 
Join Date: Jan 2013
Location: Cleveland, Ohio

My Support Groups:
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.
04-21-2014, 01:14 PM   #42
hawkeye
Forum Monitor
 
Join Date: Mar 2011
Location: New Brunswick

My Support Groups:
Link to the my thread about surgery

http://www.crohnsforum.com/showthread.php?t=59203
__________________

Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
04-21-2014, 01:37 PM   #43
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
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.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-21-2014, 06:00 PM   #44
IofNewt
 
IofNewt's Avatar
 
Join Date: Aug 2014
Location: Verdun, Quebec, Canada

My Support Groups:
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.
__________________
~~
Diagnosed with Crohn's in the 1990's
Treated with Flagyl in the past, but now taking Purenitol.
Started with Remicade Aug 6, 2014. Also using Imodium
Had resection in June 2013, but have a recurrence
already.
02-01-2015, 09:33 AM   #45
pbatkins
 
Join Date: Feb 2015
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.
02-09-2015, 06:58 AM   #46
elakes
 
elakes's Avatar
 
Join Date: Dec 2014
Location: Lexington, Kentucky
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!
02-09-2015, 07:42 AM   #47
sleepallday
 
Join Date: Sep 2014
Location: Hawaii

My Support Groups:
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
05-09-2015, 06:26 PM   #48
JameyLynn
 
Join Date: May 2015
Location: London, Ontario
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

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

remission for the most part since 2010, occasional flares but nothing to complain about!
06-21-2015, 12:56 PM   #49
AlicePamela
 
AlicePamela's Avatar
 
Join Date: Jun 2015
Location: London, United Kingdom
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.
06-29-2015, 09:04 PM   #50
Hayz
 
Hayz's Avatar
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
06-30-2015, 04:40 AM   #51
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
· Stoma
Good luck Hayz.
07-12-2015, 06:20 PM   #52
ENTheory07
 
ENTheory07's Avatar
 
Join Date: Oct 2012
Location: Newport News, Virginia

My Support Groups:
Good luck Hayz...
07-12-2015, 06:38 PM   #53
ENTheory07
 
ENTheory07's Avatar
 
Join Date: Oct 2012
Location: Newport News, Virginia

My Support Groups:
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. 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...
07-12-2015, 09:55 PM   #54
scrapr
 
Join Date: Aug 2014
Location: Tigard, Oregon

My Support Groups:
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.
__________________
Imuran
Lialda
07-15-2015, 06:55 PM   #55
ENTheory07
 
ENTheory07's Avatar
 
Join Date: Oct 2012
Location: Newport News, Virginia

My Support Groups:
I dunno. But good luck non the less!!
07-19-2015, 09:31 AM   #56
jonnyzero
 
jonnyzero's Avatar
 
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.

Last edited by jonnyzero; 07-26-2015 at 01:31 AM. Reason: content
07-26-2015, 10:13 AM   #57
DonnyZ10
 
DonnyZ10's Avatar
 
Join Date: Jul 2015
Location: Grand Rapids, Michigan
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.
08-23-2015, 06:27 PM   #58
volleyball grandma
 
Join Date: Dec 2013
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.
08-23-2015, 09:22 PM   #59
Grandma McB
 
Join Date: Jul 2015
Location: Eugene, Oregon

My Support Groups:
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.
08-24-2015, 07:55 AM   #60
DonnyZ10
 
DonnyZ10's Avatar
 
Join Date: Jul 2015
Location: Grand Rapids, Michigan
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
Reply

Crohn's Disease Forum » Surgery » Your Surgery Story
Thread Tools


All times are GMT -5. The time now is 01:53 AM.
Copyright 2006-2017 Crohnsforum.com