Hi everyone, well I am 27 years old and my case has been going on for several years now, started with gastric ulcers, progressed to duodenal ulcers, In December 2009 they wrongly diagnosed lymphoma, I had an explorative operation to remove some lymphnodes from around my stomach via laparoscopy in January 2010, unfortunately during which they perforated my bowel leading to emergency surgery. After a while gastric ulcers cleared up with the help of prednisolone but unfortunately the duodenal one's didn't and ended up closing my duodenum completely which led to me having a gastroduodenal bypass with formation of a jejunostomy on 14th december 2010, I was in hospital from 23rd November 2010 and discharged on 6th January 2011 with Foley drain still coming out of my stomach and jejunostomy intact for self administered feedings. They are toying with the idea that it is Duodenal Crohn's but as yet have been unable to pin point the cause exactly. Not sure if anyone has experienced the same but would be good to speak to people that are feeding through a jej or have been through similar experience. I have commenced soft food diet over past week but am struggling with bloating and cramps, no sickness though thankfully, also my feed is administered overnight, 13 hours, I wake up every morning with seriously gurgling and popping guts, I sleep propped up but this doesnt seem to help, also after an hour of starting my feed I experience nausea for between 30 and 90 minutes, all very strange as this didnt happen when I was in hospital, has anybody else experienced these things? Does it get easier? Many thanks and look forward to talking to you all and hope you are all doing well. Darren.
My story - Suspected Duodenal Crohns
- Thread starter GastricD
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Mar 13, 2010
- Messages
- 763
Wow - you certainly have been through it all. I don't have any advice, just my story. My Crohn's journey started 25 years ago in my duodenum. I was in college and one day I started throwing up after eating all day. This continued for a few days and then finally I had an EGD and Crohn's was diagnosed. My duodenum would close off and not allow food to pass from my stomach. Lucky for me, prednisone did the trick.
For the past few years I have been on Protonix which seems to be keeping it under control as it has not bothered me in a long time. But, you can see from my sig that Crohn's has reared it's ugly head elsewhere for me.
Good luck to you Darren!
For the past few years I have been on Protonix which seems to be keeping it under control as it has not bothered me in a long time. But, you can see from my sig that Crohn's has reared it's ugly head elsewhere for me.
Good luck to you Darren!
Hey Astra101 and CDDad thanks for the warm welcome!
CDDad I am glad that the predisone worked for you and your duodenum, sorry to see it has reared elsewhere though and Astra101 it is good to hear yours is under control, I really hope it stays that way, noone should have to go through surgery. I personally feel the gastro team didnt give the steroids enough time to work really and were a bit brash in deciding surgery was the only option but it all came on top so quickly that I felt I had little choice in the matter and just went along with it all. I was told yesterday by one of my gastro team that they had discovered narrowing further down in my intestine during my operation (news to me!) hopefully is nothing but only time will tell I guess, this Protonix, what is it exactly? The only meds I am on currently is Rabeprazole to stop the refluxes, Folic acid, lopramide(to slow down the feed going through my system) and an anti depressant and can't help but think this is not right. I hope you are coping well with everything, I really feel for you and all you have been through over the years and its admirable that you are still cracking on with everything :thumleft:
CDDad I am glad that the predisone worked for you and your duodenum, sorry to see it has reared elsewhere though and Astra101 it is good to hear yours is under control, I really hope it stays that way, noone should have to go through surgery. I personally feel the gastro team didnt give the steroids enough time to work really and were a bit brash in deciding surgery was the only option but it all came on top so quickly that I felt I had little choice in the matter and just went along with it all. I was told yesterday by one of my gastro team that they had discovered narrowing further down in my intestine during my operation (news to me!) hopefully is nothing but only time will tell I guess, this Protonix, what is it exactly? The only meds I am on currently is Rabeprazole to stop the refluxes, Folic acid, lopramide(to slow down the feed going through my system) and an anti depressant and can't help but think this is not right. I hope you are coping well with everything, I really feel for you and all you have been through over the years and its admirable that you are still cracking on with everything :thumleft:
