Does anyone have Crohn's by Duodenum

[beaches]

New here so please be patient. My adult son has Crohn's up by his duodenum. When inflammation flares this prevents him from digesting foods and he throws up most everything. I have read a lot about folks with Crohn's that affect intestine and below but not in this area.

Are there other folks out there with Crohn's affecting this area?
And how have you dealt with this?

 

[Sophabulous]

I do! Ask me anything [emoji5]

 

[Squirrel#1]

New here so please be patient. My adult son has Crohn's up by his duodenum. When inflammation flares this prevents him from digesting foods and he throws up most everything. I have read a lot about folks with Crohn's that affect intestine and below but not in this area.

Are there other folks out there with Crohn's affecting this area?
And how have you dealt with this?

I have Crohn's all over! Even a small section of my esophagus. It actually has no preference where. I became severely malnourished. I highly recommend getting him into his GI for a CT to make sure there's no blockage.

 

[beaches]

How long have you had?
So do you throw up all the time when not in remission?
Can any food pass thru to your stomach?
How do you maintain nutrition and health.
Do you go to a nutritionist or does Crohn's doc treat everything?
Have you remissions?
I've heard that folks with Crohn's of the intestine can have surgery to have part of the intestine removed, I know Crohn's can move around, however we were told operation in this area, duodenum, is very rare because of major organs in the area and low success rate so it sounds like medication is the only option. Do you agree?

 

[Guerrero]

I don't. In every case medication is the firts option, then if medication is not sufficient you'd need surgery. Surgery in the duodenum area is absolutely possible and not that complicated, but it is always preferable to avoid it.

 

[beaches]

thank you. I hope I am confused! i'll go back and verify.

 

[Squirrel#1]

How long have you had?
So do you throw up all the time when not in remission?
Can any food pass thru to your stomach?
How do you maintain nutrition and health.
Do you go to a nutritionist or does Crohn's doc treat everything?
Have you remissions?
I've heard that folks with Crohn's of the intestine can have surgery to have part of the intestine removed, I know Crohn's can move around, however we were told operation in this area, duodenum, is very rare because of major organs in the area and low success rate so it sounds like medication is the only option. Do you agree?

I've had it DIAGNOSED 3 years went 2 years without dx. By the time mine was dx it was in severe status. I ended up in the hospital for 6 months. Over 2ft of intestines removed along with most of my colon and now have an ilieostomy bag. AGAIN didn't have the dx right away. Hick Drs!!! I was told that ensure and boost also even slimfast was good for flares. It is easy to absorb and easy to digest. I have one boost every morning since I can not digest many vegetables or fruits. When I flare I drink one 3x a day. Along with puddings and jello. I'm praying for you!

 

[Jabee]

I do. I’ve had a stricture in my duodenum and have been hospitalized twice for inflammation throughout my small intestine. While I don’t throw up all the time, I do get extremely nauseated and I just can’t eat anything. I usually switch to clear liquids when things don’t feel right and that helps. What medication(s) is he on? PPIs have been very helpful and I have a couple of medications for nausea that also help.

 

[Sophabulous]

I was diagnosed last April, but suffering strange symptoms for 6-7 years prior to this. I was also misdiagnosed and mistakenly treated for H Pylori from June 2015 to when I received a correct diagnosis (somebody thought it might be a good idea to take some biopsies rather than assume by that stage.)

Prior to diagnosis I was vomiting sporadically, but I would also have periods lasting 5-7 days where I would vomit up almost anything I ate or drank. Most of the time it was just liquid and bile by the looks of it. I always put these down to sickness bugs as they cleared up in a few days. I also had a fever, chills etc which is what made me think it was a virus or something. Little did I know! I’ve yet to experience remission, the inflammation has gone from severe to moderate with Azathioprine, lots of steroids and a liquid diet. It isn’t quite enough to get my Crohn’s in check so I’m waiting to start remicade.

Food can pass through to my stomach now, but it can be slow. Depending on what I eat I can get pretty awful heartburn and reflux from the ulcers. Initially I could barely eat a few mouthfuls of anything without feeling like I’d eaten a 7 course meal. I could literally feel the food weighing down as it was bottlenecking through the inflammation, and if I continued to eat anyway I would vomit up completely undigested food. This has improved to a degree, I still have a reduced appetite, but I can physically eat a decent portion. I currently only eat one meal a day, but I try to make sure it has a good variety of food and I eat a decent amount. I also drink juices or supplement this with ensure plus.

I saw a specialist dietitian for 12 months, I can’t recommend this highly enough. It was a HUGE eye opener and she was incredibly informative and really knew what she was talking about. I’m about to be referred back to them again as I’m going to do another liquid diet to try and calm this flare I’m in. If this is an option for you I would definitely recommend seeing one.

Surgery has not been discussed with me as I haven’t exhausted my options with drugs yet, however I too have heard that duodenal surgery is avoided if at all possible these days.

I hope that helps!

 

[Sophabulous]

Also just to echo Jabee, I find PPI drugs and anti nausea meds’ have improved my quality of life even though I’m not in remission. In my case I take esomeprazole 40mg once or twice a day, and cyclizine 50mg up to 3 times a day.

 

[Jabee]

Sophabulous, that’s very interesting about your appetite. I don’t really have an appetite anymore either. I probably eat only one full meal like you, but it’s often in little bits throughout the day. Before I was hospitalized the first time I couldn’t eat or drink anything and was nil per mouth for almost a week. I also tend to gravitate towards white things (chicken, rice, etc.) which isn’t exactly a great diet. I do more fruit than vegetables, too. It’s interesting how much the PPIs help; I took nexium twice daily right after I was diagnosed, then reduced it to once a day, and when it stopped working for me I got Barrett’s esophagus and switched to dexilant first once a day then twice. Going to twice a day has really made a difference in the way I feel.

 

[Sophabulous]

Sophabulous, that’s very interesting about your appetite. I don’t really have an appetite anymore either. I probably eat only one full meal like you, but it’s often in little bits throughout the day. Before I was hospitalized the first time I couldn’t eat or drink anything and was nil per mouth for almost a week. I also tend to gravitate towards white things (chicken, rice, etc.) which isn’t exactly a great diet. I do more fruit than vegetables, too. It’s interesting how much the PPIs help; I took nexium twice daily right after I was diagnosed, then reduced it to once a day, and when it stopped working for me I got Barrett’s esophagus and switched to dexilant first once a day then twice. Going to twice a day has really made a difference in the way I feel.

I can’t tell you how good it feels to hear from someone else with the same issue. I also only stick to white meat and fruit rather than veg. Rice and potatoes are also a safe food for me. Red meat and also anything sweet rather than savoury turns my stomach!

It doesn’t matter how many times I’m told little and often is best, I struggle with that because of my symptoms and work! Supplementing with ensure is a lifesaver [emoji6]

I do worry about the PPI’s limiting the absorption of nutrients, but the reality of not taking them would mean I could barely eat at all. It’s a difficult situation to be in for sure.

 

[Jabee]

Sophabulous, I feel the same way! I cook dinner for my Mom (she’s 95 and lives with me) and whichever of my children are home and don’t want to eat anything myself. I feel like I am at war with food. To make it even more frustrating I can’t shed the steroid weight I gained last year. I’m 56 and discovering that it takes really hard work to stay healthy. It was much easier just 5 years ago. Another thing I’ve found is that I’m never hungry in the morning and sometimes don’t even eat until dinner time. I also get full really easily and frequently get really painful hiccups. Sometimes I just wish I could get my nutrition in pill form—less bulk and no prep time!

 

[Sophabulous]

Sophabulous, I feel the same way! I cook dinner for my Mom (she’s 95 and lives with me) and whichever of my children are home and don’t want to eat anything myself. I feel like I am at war with food. To make it even more frustrating I can’t shed the steroid weight I gained last year. I’m 56 and discovering that it takes really hard work to stay healthy. It was much easier just 5 years ago. Another thing I’ve found is that I’m never hungry in the morning and sometimes don’t even eat until dinner time. I also get full really easily and frequently get really painful hiccups. Sometimes I just wish I could get my nutrition in pill form—less bulk and no prep time!

Yep, I can 100% agree with everything you say. I also haven’t shed my steroid weight from earlier this year, but last year it fell off me once I stopped taking them! I’m actually right in the ‘ideal’ section according to my BMI so whatever I’m doing must be working. Before I was always underweight


My relationship with food is much better than it was, but nowhere near normal. I’ve seen other posts from people saying they can’t not eat no matter how bad their symptoms are as they love food. That one is lost on me ha ha, I barely get hungry and most of the time the only reason I know I need to eat is because I’m so nauseated. I have to choke something down (usually a whipped yoghurt or something light like that) and it gets much better. You wouldn’t believe how long it took me to work out that when the nausea is getting worse it’s because I need to eat!

I also can’t eat in the morning, I usually eat a decent lunch at work and that’s it. Occasionally on a good day I’ll have a snack in the evening, but that is rare. I certainly couldn’t eat another full meal. I find I’m much worse at the weekend too because I have no routine. Work is crazy right now so I always eat lunch although I can’t take a break so I eat at my desk. It’s horrible because I need to eat to give myself the energy to get through the rest of the day, but I feel so weighed down and heavy afterwards I wish I hadn’t eaten! Weekends I take it easy physically, so I tend to just eat in the evening.

Do you have disease activity elsewhere or just the duodenum? My doctors are fixated on the inflammation in my ileum, but that causes me relatively little issues. Although the last few months I’ve been having the more classical bowel disease symptoms, previously If I tried to turn the conversation towards the duodenal inflammation, they look at me as though I have 3 heads!

 

[Jabee]

The inflammation has been active throughout my small intestine. Eighteen months ago it was in my duodenum and jejunum; a few years earlier it was the jejunum and ileum, and when I was first diagnosed a decade ago it was exclusively in my duodenum. For some reason every health problem I have (I also have celiac disease and chronic migraines; I’ve had the latter for 19 years, ever since my youngest child was born) has to be “complicated” as my doctors say. I usually present with atypical symptoms and respond well to medications for a little while. Then I relapse and we have to tackle whatever is going on differently. I feel like it can be fun to be unusual in just about any area but medicine! I’m currently having really bad hand pain for some reason. I see my GP next week so hopefully she’ll have some ideas. My wonderful GI is going into semi-retirement so I need to check in with a new GI whom he recommended. I’m currently taking Entocort but it’s not doing the greatest job so I may have to switch to a biologic or perhaps methotrexate. Azathioprine and 6MP are out since they give me pancreatitis which is definitely no fun.

You must be exhausted by the end of the day. Are you able to rest up over the weekend? That’s the other thing that gets to me: fatigue. Sometimes I feel like I am perpetually tired. It’s like I’m too far behind to ever catch up!

 

[Sophabulous]

Yes you’re dead right, being interesting medically is not good! I feel like a guinea pig ha ha. I actually tried to pay for a private appointment with a GI to talk specifically about why small bowel and particularly upper bowel issues present so differently, his secretary kept putting me off so I gave up in the end! [emoji23]

Ugh, the fatigue...don’t even go there. I spend all weekend napping and generally not doing much to recover. It’s my OH’s birthday tomorrow and we’re going to an all you can eat pan Asian buffet tonight, so I can’t eat all day or I wouldn’t get my money’s worth later ha ha!

Hope you get some answers soon, unexplained aches and pains are no fun!

 

[mere282]

Yes.
I vomit often especially if I eat things I shouldn’t or to much
Surgery should be last option
I drink replacement shakes boost and ensure upset my stomach I think there to thick maybe.

I use Iv zofran for nausea and Iv hydration because of the fast transit time. I had a port put in a few years ago and that allows me to get a lot of treatment at home versus hospital.