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Crohn's Disease Forum » Surgery » Gastrojejunostomy


08-24-2012, 02:35 PM   #1
DFreeman
 
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Gastrojejunostomy

Hi, I've wondering if anyone has had a gastrojejunostomy on this forum. I've searched and only read about two people who've had this done. I had this done March of 2011 and I've never talked to anyone else who has gone through this surgery. I thought it would be cool to compare how other people have done with this surgery. I have Crohns in the duodenum and have a stricture. Couldn't eat solid food, hence the surgery. Anyone been through this before?
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Diagnosed Crohn's 2008
Cimzia 2008 - didn't work
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Surgery March 2011
Remicade - Fall 2011
08-27-2012, 06:38 PM   #2
David
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Hi there

You may want to reach out to this member.

Best of luck to you!
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01-29-2014, 09:57 AM   #3
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New to this forum and maybe a bit late to answer this query, but I would be interested to know how you have got on since your gastrojejunostomy? I had one done in 1994 which served me well until about 2005. I had a revision in 2007, done as a roux-en-y which has been absolutely fantastic. Gone from not being able to eat solids and being sick all the time to be being able to eat anything. I weighed about 120 pounds before the op (5 feet 11 inches, male, early 40s) to having to watch my weight now! Take care ;-)
01-29-2014, 05:18 PM   #4
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I had my surgery in March 2011. Since then, it's been up and down with Crohns. The past 6 months has been pretty good. I eat solid food every day, I just can't eat a large quantity. I have a lot of bloating after I eat....sometimes worse than others. I have been taking digestive enzymes after I eat to help with the digestion and they definitely help. I have lost weight due to Crohns and due to the surgery, but in the last 6 months, I have gained some back. Another factor to throw in my situation is histoplasmosis. I have to balance my Crohns treatment with the histo. Last year I was testing positive for histo again which may have contributed to my weight loss. Good to hear from someone who has actually had this surgery!
01-30-2014, 03:00 PM   #5
David
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Ouch on the histoplasmosis, I'm sorry to hear that. Out of curiosity, what are your symptoms that lead to that diagnosis?
02-04-2014, 12:33 PM   #6
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I was on a high dosage of Remicade when I got histo. The symptom was fever....constant fever for 21 days straight. The first 19 days it was unknown what was causing the fever. Blood work revealed extremely high liver numbers which prompted a liver biopsy, then the discovery it was histo. I had it in my liver and lungs. I never want to be that sick again. 9 days in the hospital. It took me a long time to get my strength back. My ID doc said you have to measure improvement by the month, not by the day or week. I found that to be very true.
02-07-2014, 05:18 AM   #7
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hi Dfreeman, wow I never thought I would find someone to actually ask about this surgery! I've googled so many things and never find much. I had a gastrojejunostomy only 6 weeks ago. My crohns has always affected my large bowel so when I started experiencing stomach problems along with being very ill, weight loss and a lot of sickness I didn't know what was going on- eventually they opted for surgery as the stricture at my duodenum was too long to try stretch. Doing ok now since surgery, back on food after tpn in hospital. I still feel quite weak and get odd sharp pains in my stomach - I wonder if you experienced this? It's like a stitch but in odd places. Maybe postoperative pain?
Anyway it will be great to discuss. My doc said i was a very rare case!
Cheers, Ruth
02-07-2014, 12:10 PM   #8
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Ruth, yes I knew duodenal Crohn's is quite rare. Less than 5% of Crohn's patients have this. Wow, 6 weeks. Yes, I had some sharp pains. It took a while for me to stand up straight because of the abdominal muscles were cut. About 6 days post op, I threw up after drinking an Ensure which caused me more problems with the incision. I had a hematoma from the strain of throwing up which caused a lot of pain and nausea. I was actually admitted back in the hospital only to discover from a CT that it was only a hematoma. It just had to heal on it's own, so they sent me home. It was hard getting back on solid food and I can't eat a lot at one time. Now, almost 3 years later, I still have a lot of bloating after I eat. I think some of that is due to the stricture (which will never go away) and the new hook up. The surgeon said I have to take Prilosec everyday to prevent stomach acid from causing an ulcer at the new intestine hook directly up to my stomach. Do you take some kind of stomach acid preventer? I also have somewhat of a hernia due to the incision. It doesn't really bother me that much, but it does bulge out out a little from my stomach. I eat solid food now and pretty much whatever I want. I have to watch spicy food and food with a lot of roughage. I started lifting weights about 6 months after surgery. I had lost so much weight and strength. I still go to the gym 2 days a week and lift weights, I do abdominal exercises and other resistance training. For the first 18 months or so I had pain in my stomach when lifting, but that has since gone away. Good to talk with someone who has had the same surgery I've had. I'd like to hear more about your experience.
02-07-2014, 06:05 PM   #9
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That's some time you had, are you keeping well now? What meds are you on the control your crohns?
I started feeling not right last summer, mentioned it to the doc but they just gave me omeprazole (which is Prilosec I think) thinking it was excess acid. Then over the next few months I got worse and worse, eventually keeping nothing down. I got admitted to my local hospital then transferred a couple of hours away to be treated by the experts! They didn't even know what to do. I was in three hospitals for 7 weeks. My recovery is going well since surgery, I eat smaller amounts and yep avoiding spicy or rich things. I'm on esomeprazole - another ppi to control acid. I'm also taking domperidone with my meals cos I still feel sick now and then.
I'm on Humira and mercaptopurine as immunosuppressants. I was on that before and it obviously didn't prevent the flare in my pyloris/duodenum but my doc wants me to stay on these as it is keeping large intestine well.
I'm off my work at the moment, I wish there was a time scale for recovery. I guess it's like asking how longs a bit of string!
Where in the world are you? Your doctors good?
02-07-2014, 08:39 PM   #10
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Interesting this thread popped up. I started feeling pretty awful about a year ago. The issue was nausea and not keeping things down. Last summer they did a scope and found a pyloric stricture that she couldn't stretch. So I after that I just dealt with it until this past Xmas when I just couldn't deal anymore. They scoped again and dialated the stricture but it only gave me 10 days or so of relief. Dialated again a month later and this time lasted 2 days.

So I met with my doc and we came up with a plan. Ask to get stelara released for use, scheduled another scope by another doc to see if they have better luck, schedule an appointment with a surgeon for a consult (just in case tpwe have to take that route). The new doc scoped me and we both decided to try a mesh stent to keep the stricture open. So far so good and instead of throwing up 3 timesa night I've only thrown up twice this week. Was throwing up a big issue for you two?

The whole crohns in my duodenum is a new thing for me it's always been lower bowel. When did you decide surgery was the best option?
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02-07-2014, 11:16 PM   #11
dave13
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I also have gastroduodenal crohn's.I had emergency surgery for blockage,about an 8 inch resection.My surgeon told me it was a rare place but I was surprised to hear just 5% from DFreeman's post.I wonder why?My resection was 11-25-13,by the way.
02-08-2014, 05:54 AM   #12
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Hi jenna, your case sounds similar to mine. So I feel your pain! When they first did a scope and found the stricture, they thought about a stretch. I then had another scope a few weeks later and also a barium X-ray. Luckily some of the barium managed to pass through and from that they could see the stricture was about 8cm- so the stretch was ruled out. A biodegradable stent was ordered and the thought then was to open it up with that. My doctor then decided there wasn't enough evidence that this was a good long term option and we opted for surgery. All that happened within a matter of weeks as I was getting more and more ill. My next barium a week after the first didn't even work as nothing left my stomach. Yes vomiting was the issue. It got to the stage that nothing- not even fluid would pass through so the contents of my stomach had no where else to go! I was sick 2-3 times a day. I see you're on TPN feed? Is due to the stricture? I was put on tpn in hospital and it meant I didn't need to eat which was such a relief! I was sick and tired... of being sick and tired! I had a nasogastric tube put in to drain my stomach too to keep it empty.
But since surgery, I'm eating normal and my Hickman line is out surgery was definitely the best option for me. I'm amazed how quickly my symptoms improved. I'm so used to medical treatment that takes at least a year for me to work!
I hope the stent continues to work well with you, although continuing to be sick twice a week is not so good great to talk to others with similar problems xx
02-08-2014, 08:02 AM   #13
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These symptoms being described are what I had before my surgery,before I knew I had crohn's.It went on for several months,waking at 2a.m. and feeling awful,from feeling awful to being violently sick.I lost weight and was always tired.They put in a nasogastric tube at the ER because nothing was getting by the blockage.I kept the tube for 2 days after surgery and then it was taken out.I was in so much pain before surgery!They found my blockage through ultrasound and MRI.I feel pretty good now,all things considered.I am worried about more stricturing and blockages in the future.I was told it was crohn's when my resection results came back from the lab,day after thanksgiving.I lost 23 pounds and haven't gained any weight back since surgery in November.I seem to hang around the 169-170 area.I see my GI next week for the first time.My surgeon said it would happen again,hopefully not for quite awhile,but it would.Is this true?

Last edited by dave13; 02-08-2014 at 08:31 AM.
02-08-2014, 10:58 AM   #14
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Your surgery Dave was only about 3 weeks before mine. How are you feeling now? Are you back to full strength? I also lost a lot of weight very quickly, about 28lbs, then a few more after the surgery. I've managed to put back on a couple of lbs. I'm worried about it happening again too- my doctors not changed any of my meds so I guess there's a chance the new section joined to my stomach could be affected. Hopefully you'll GI will discuss medication to stop a relapse
02-08-2014, 12:16 PM   #15
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I've been on TPN for about 2 years. I've had four past resections so even before this stricture business I wasnt absorbing anything and was so malnourished so TPN was started. My stricture must not be completely closed because I did have periods of relief they were far and few between but great when it happened. My situation was a bit annoying, since I was already using TPN my doc wasn't quite on the ball and would really only do anything once I got sick and tired about throwing yo every night, then she'd do something. I never had to go to the ER or anything since Even though I wasn't keeping anything down TPN kept me in all the nutrients i needed. It's been a year of this but now I feel like we have a solid plan in place. The stent is only temporary, they're hoping once they take it out it's going to stay open. My GI has one patient that she dialates every 6 months. I just don't know if I can do that but I really don't know if I can do another surgery. The older I get the harder they get lol.

Dave what is with the middle of the night sickness, that's my big issue too. Always in the middle of the night then like every 2 hours after and once more before I have to go to work at 730.
02-08-2014, 02:06 PM   #16
dave13
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Your surgery Dave was only about 3 weeks before mine. How are you feeling now? Are you back to full strength? I also lost a lot of weight very quickly, about 28lbs, then a few more after the surgery. I've managed to put back on a couple of lbs. I'm worried about it happening again too- my doctors not changed any of my meds so I guess there's a chance the new section joined to my stomach could be affected. Hopefully you'll GI will discuss medication to stop a relapse
I feel pretty good.I never feel well rested,but overall pretty good.I modified my diet quite a bit but I am conscious of what I eat to get nutrition.My weight doesn't bother me as long as I feel well.I've been told by Dr.'s diet doesn't matter.If nothing else it makes me feel good and proactive to have a good diet.I really don't want to go on any meds.My diet may not prevent a relapse but may delay one.How are you feeling rcameron8?I felt more comfortable once the staples were removed,how about you?This was my first ever surgery and stay in a hospital.At the age of 50!Remember to continue to be careful,especially when you start feeling better.Incisinal hernias are common after surgery.I know.I had surgery for a iguinal surgery once I was feeling better from my resection.I did it my first day home from the resection. So be careful!You don't want either one.Do you feel meds work for you?
02-08-2014, 07:35 PM   #17
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Yeah I'm feeling a little stronger each day, my stomach must have shrunk as I still feel full quickly and nauseous at night. My surgery was done key hole so my scars are healing well! Amazing what they can do. My meds have controlled my crohns in my large intestine for the last 3 years and still are. So very confusing why I had a flare up else where. Crohns is a complicated disease!!
Thanks for your added advice
Ruth
02-08-2014, 09:57 PM   #18
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Your welcome Ruth.I was a bit foggy from the dilauted and excited for a shower that first day home after my resection.I'll blame the hernia on the dilauted.I still feel foolish, but if it reminds someone to be careful after surgery it's worth telling.Hopefully your nausea will go away.I get full quick as well.I eat smaller meals/snacks more frequently.There are days when I'm just not hungry.I feel o.k.,I'm just not hungry.I was told because my blockage was near the beginning of my duodenum they basically disemboweled me,cut out the bad section,reconnected things and stuffed it all back in.It's an interesting scar,it healed much better than I thought it would.I'm glad yours was less invasive.It is amazing like you say.
02-10-2014, 10:03 AM   #19
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Dave, Ruth, Jlm, it's very interesting to hear your stories. I've been to 2 GI doctors in Memphis, TN and my case was new to them as they have never seen duodenal Crohns. I went to the Mayo clinic in 2012 and they have only seen a handful of cases. Mayo clinic sees patients all over the country. The GI doc at Mayo told me it was very rare to have duodenal Crohns and that typically the disease in the small bowel is more aggressive.

My situation started in 2008. I would eat and shortly afterwards (30 min) I would start to have a lot of bloating and burping. It felt like if I could burp, I would feel better, but that was never the case. Over the course of a couple of hours after eating, the pain would intensify to the point of throwing up. After I threw up, I would feel better. I went to a GI doctor to find out what was going on and after scopes it was determined that I have Crohns. I had a bunch of ulcers in my stomach and small bowel. This was the beginning of treatment with prednisone, emuran, then I tried Cimzia which didn't do anything, then Humiria which didn't help at all, then Remicade. Remicade seemed to help, however I was taking a double dose every 6 weeks plus prednisone. This suppressed my immune system so much that I got histoplasmosis in the lung and liver. After this was discovered, all immunosuppressant drugs were stopped. After 8 months of recovering from histo, the Crohns really gained a foothold, hence the surgery in 2011. The doctors told me the stricture was so closed up that scar tissue had built up and it was past the point of drugs helping it. So, the only other option I was given was surgery. I'm now back on Remicade but the dosage is normal and interval is every 8 weeks.

For what it's worth, I started seeing a holistic doctor last year. I've never been a big believer of holistic treatment, but I had been to Mayo Clinic, Vanderbilt, and have tried every new biologic drug out there for Crohns. I was even tested at Mayo for a drug called Tysibri, but I am unable to take this because of the probability of a fatal brain disease caused by Tysibri. I have some friends that have gone to this holistic doctor and they have done extremely well. So I thought why not? What have I got to loose? After seeing this doctor, he put me on LDN (low dose netrexone). I'm not sure what has caused me to feel better, but about a month after taking LDN I started to feel much better. I'm not saying the LDN is what has helped me, but I can't say it hasn't helped either. I've read some studies on LDN and it has been proven to help Crohns patients. I'm not sure, but all I know is that I've felt better the last 8 months or so, than I have in 5 years. I can't really say if its Remicade or LDN or both.

It's really interesting to communicate with other Crohn's people who have duodenal Crohns and have had the gastrojejunostomy surgery. There aren't many people like us and it's fascinating to hear your experiences.
02-10-2014, 01:59 PM   #20
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Hi DFreeman,I'm surprised at how rare it is.I wonder why that is?Is it random or do people with gastroduodenal crohn's have something in common?I confess to knowing very little about CD before my resection.I see my GI next week,finally,for the first time.The forum has been my main source to educate myself.It was a Godsend when I found it post-op!I also belched quite a bit before surgery and rarely now.I had the acid reflux and frequent belching for a year or so now I look back on it,neither bother me now.I think alternative approaches to IBD are worth looking into.Full disclosure:I work in a health food store.I may be a bit biased.I also chuckle at the irony of working in a health food store and having crohn's.I'm interested in learning more about LDN.It can be more aggressive in the duodenum?
03-02-2014, 10:30 PM   #21
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So it's official. Dilation and the placement of a stent didn't work. The funny part is the stent migrated upwards into my stomach and is just currently floating around in there. I've had crohns a long time and have been through a lot, the idea that it's just in there is really strange to me, my GI is going in to get it next week, she said the worst thing that can happen is I throw it up. That would be a high point in my illness, not.

So since nothing has helped both of my GIs have agreed its time to consult a surgeon. I don't know what my options are yet but it looks like it will be a resection, that I'm praying isn't and open surgery.

My last surgery was nothing but normal and healing too a bit longer then normal since I pushed it to hard. How much time would you think is a reasonable time to take off of work?

Technically I can live without the surgery since I'm on TPN. But I seriously can't deal with not eating,at this point I throw up everything including water. I would saymyquality of life is pretty dismal, is eating normally a good trade off for the surgery.
03-03-2014, 06:07 AM   #22
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Hi jlm,I think it was about six weeks after my resection I felt like I was able to get back to work on a limited basis.I had open surgery.

I can relate to throwing everything up,even water.I didn't know what was happening at the time.I try not to be paranoid now whenever my guts grumble.

Surgery is a big decision.Quality of life has to be considered,in my opinion.Mine was an emergency procedure,not much discussion.I'm sure you've been going over the pros/cons so much your head hurts.Quality of life is important,to find our best 'new normal' we can is a challenge.

I have a strict diet,but I seem to be able to eat o.k..I have been sick twice since surgery.I feel it was because I shouldn't have eaten what I ate,too rich for my diet,my body not use to such foods.Not a flare.

I try not to be paranoid about food.I am weary though.I find myself wishing there was a definitive list of triggers.

Keep us posted and I hope it goes well!
03-27-2014, 09:20 PM   #23
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So it totally hasn't worked yet. I'm almost 2 weeks post op and once we took the NG tube out I'm still throwing up. Only this time it's Garenteed twice a day when I don't eat or drink anything at all. Plus 0 bathroom visits. I'm being released tomorrow since there's nothing more surgically they can do for me. Since I'm on TPN I'm pretty much self sustaining.
03-28-2014, 07:56 AM   #24
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Sorry it hasn't worked for you jlm.This was surgery number five? Wow.Saying you gave it a try may sound trite now...but you did! You did something to fight CD.Was it open surgery?

I talked with my surgeon recently and found my CD is in my upper jejunum.Not the duodenum.I guess it is around where the duodenum ends and jejunum begins.He and my GI say it is an unusual place.

I hope you are healing well jlm.Keep us posted..
03-31-2014, 10:43 AM   #25
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Hi jlm, I'm sorry to hear about all that's going on recently. I can relate to a lot of what you say. I had surgery 15 weeks ago now and still don't feel 100% or ready to go back to work. I really wish I did. To know when I will feel better would be amazing!! Still suffering from nausea and some sickness. And generally feeling crap!
How is everyone else doing?
Ruth
04-02-2014, 11:28 PM   #26
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Thanks! Good news. It's been over 24 hours and I haven't thrown up. I've thrown up everyday for the past 10 days. And almost everyday for almost a year before surgery. I've also went to the bathroom. More then once. TmI i know but god am i excited. Apparently it really did just take a really long time for my body to recognize that my stomach had a new exit in there. My doctors believe I've had to many bowel surgeries lol. Who knew.
04-03-2014, 06:30 PM   #27
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This is great news!!
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