Upper GI Crohn's: Advice

I've been doing my best to try to maintain my weight but ever since I got out of the hospital friday, I've already lost 10 pounds & the Prednisone hasn't given me any increased apptetite. For some reason I LOSE weight on Prednisone. :ybatty:

My Crohn's is currently flaring in my stomach, ileum, whole colon & rectum but the pain is bearable enough for me to not go & get admitted again-except for in my stomach. I can't stop throwing up & everytime I think about food I just get disgusted at the thought. I've been having a lot of obstruction pains & am trying to hold off getting admitted. When I say the inflammation in my stomach is bad, I'm saying that when I had my last set of scopes, my GI still found food in my stomach. I didn't eat any food two days prior to the scopes. The foods that soothe my lower GI don't neccesarily smooth my upper GI. Anyone have any suggestions? Any pain remedies?



Thanks in advance!

Hi,
I had the same problem with food in my stomach despite a long period of not eating. I also have GD crohn's and lots vomiting etc.
When my duodenum perforated I had a nasojejunal tube put in which bypasses the stomach and duodenum and the feed is slowly put in via a pump .
This has helped with symptoms though my weight hasn't increased that much due to poor absorption. It generally has stopped weight loss except when my symptoms are much worse.
Nasojejunal tubes have to be put in via a scope and last 6-8 weeks. I have had mine replaced a few times now but hoping that this one may be my last. They have really helped me.
It's worth speaking with your GI as you can't keep losing weight.

Thank you! I'm going to bring it up to my GI & if I have to go to the hospital before then, I'm just going to ask them about putting in the NJ tube. Now I just have to figure out how to go about asking for someone to stick a tube down my nose. Usually when I get tube feedings it's because I'm not eating for days at a time & have no choice.

Wow, that must be terrible *hugs*

How much zinc do you take and how much prilosec and zantac? Do you feel the prilosec and zantac have helped with your symptoms?

And how long have you been on the Sulfasalazine and can that coincide with your stomach symptoms? It's one that can definitely upset the stomach. Quite a few people are allergic to it and it causes a wide range of side effects which is why it's not used near as much as mesalamine.

Can you try EN ( peptamen)?
It can be drank orally.
YOur doc can write a script or you can order it through nestle directly.

http://www.nestlenutritionstore.com...-1?rank=4&v1=rank&asc=1&catpath=digestive.3.1

It stopped my Ds's chronic vomiting- of course once he started to add food it came back.

Not sure how to treat his upper crohn's
hope you figure it out soon

I've tried just doing EN(with no tube feedings) but it won't stay down for long & I get really full just after my first 'can'. I was drinking a lot of Ensure Enlive!(It's a juce that's gluten & lactose free) but I got tired of it after a few months.

The Prilosec & Zantac have helped tremendously compared to how I was before(I burped/threw up so much I got 'kicked out' of one of my classes at school) but it just isn't cutting it. I take 150 grams of Zantac twice a day; 40mg Prilosec once a day & 50 MG of Zinc once a day.

I can't digest many Meslamines & I was taking Apriso for a while because it is the only one I could actually break apart the capsule & swallow the inside of it as opposed to just swallowing it whole. My JRA has been flaring really bad with the Crohn's so I switched over to Sulfasalazine in late March to see if it would help my joints. My GI is considering adding the Apriso back again in addition with the Sulfasalazine but he said he's never had a patient be on both drugs at once so he has to talk with his colleagues about risks vs benefits. In my GI's words "It's hard to find a balance between your Crohn's & JRA. We can't lose your gut & save your joints but we can't save your gut & lose your joints." It's just hard to find the balance between all of these medications, if you get what I'm saying? We're just kind of playing by ear & if my joints get better by Augustishh then I'm probably going to experiment & see how bad my joints get if I just add Apriso & quit the Sulfasalazine. Confusing, I know!

Anyways, I have an appointment with a GI(not mine) in my hometown next week & I'm going to ask his opinion about ordering me some Peptamen or maybe an appetite stimulant.

Thanks! Ya'll are amazing!

It may very well be the zinc causing a lot of your upper GI problems. Zinc toxicity is a VERY real problem and can easily occur at 50mg in adults. And based upon your size, I'm guessing your upper limit could be well less than that. Symptoms of acute zinc toxicity are diarrhea, nausea, vomiting, and abdominal pain.

Did they test and find that you were deficient in zinc? And you were given that dose based upon that deficiency? Or are you self-supplementing?

The Linus Pauling Institute is FANTASTIC when it comes to vitamins and minerals. Here is the tolerable upper limit for zinc based upon age:

Tolerable Upper Intake Level (UL) for Zinc

Age Group UL (mg/day)
Infants 0-6 months 4
Infants 7-12 months 5
Children 1-3 years 7
Children 4-8 years 12
Children 9-13 years 23
Adolescents 14-18 years 34
Adults 19 years and older 40

Click to expand...

If you haven't tested positive for zinc deficiency I'd discuss going off it with your doctor to see what happens.

Peptamen is more broken down ( elemental peptide based)compare to ensure (whole proteins) so only the first few inches of the gut are needed to absorb it.
IT tastes bad but it can be done.

Thanks David! When I have my monthly bloodwork done in a few weeks I'm going to ask them to test my Zinc levels. My GI just told me to take Folic Acid, Zinc & Vitamin B12 because of my malabsorption. I don't know the actual levels. I asked my GI about the other things like Vitamin D & he approved.

Thanks Mylittlepenguin: I have an issue with eating & if it doesn't taste well I doubt I'll be ale to drink it. The best I've ever felt was on an NG tube. I'm going to have to sample that stuff before purchasing so I know what I'm getting into. I don't think I had any inflammation in my duodenum on my last scope so I'm sure, absorption wise, it should be good.

I'd ask about going off the zinc at your appointment next week. I wouldn't wait to test your blood levels. See if it helps your upper GI symptoms by going off it. I bet money it does. At the very least, discuss taking a significantly decreased dose.

Will do! My scans from last week showed inflammation in the stomach & I've always had blockages prior to even starting Zinc(in Upper GI) but it won't bother me a bit to take one less pill The less the better!

I don't think it's the root of your problem, but my guess is it's making it worse.

I had a GI appointment today. It wasn't with MY GI though. It was a follow up visit with the attending GI at the hospital I went to, when I was admitted two weeks ago. I feel like I'm 'back stabbing' my GI by going to him but my mother insisted, for second opinions sake. My GI told me to feel free to 'visit' with him since this GI is local & he is 4 hours away.

Anyways, I needed the follow up & my mom wanted to know his opinion about me being RX Cimzia. I was RX Cimzia because I failed all the other drugs & my Rhuematologist & GI were in agreement it would be useless to try the immunosuppresants. This GI was in agreement with my current GI & Rhuematologist that my disease is too severe, has been flaring for too long, to be on an immunosuppressant & that Cimzia is one of my last options.

I lost 15 pounds since being out of the hospital, am still going to the restroom 3-10 times a day, am vomitting & have just felt fatigued. This GI doesn't want me to taper off the steroids because 1) I'm not feeling great 2) I am not absorbing the pills. I have been on steroids since October & everytime I taper down I end up in the hospital, back on 60mg Prednisone, for atleast a week. I know I need to get the inflammation down but I can't stand Prednisone any longer! It's worsening my gastritis, I'm in bifocals at 15, I cant even digest the pills so I don't see the point in staying on it longer! What do you guys think? I've gotten multiple opinions & every doctor tells me the same thing: You need to get off the steroids but if you don't have them, you're going to get worse. I know this! I am having a DEXA scan next week since I'm at risk for osteoporosis: The Crohn's, I'm female, I have JRA, I've been using steroids chronically.

The doctor said my Crohn's is really active in the stomach, hepatic flexure, cecum, sigmoid & ileum. I just feel stuck. I don't know what to do if Cimzia doesn't work. I've tried so many diets & even began 'juicing' today but after the first few sips I curled up in a ball, cried my eyes out & just rocked back in forth because it burned the ulcers from throat-stomach. If you were in my position, what would you do? I need to get off these steroids. I have gotten so many 'second opinions' & the sad thing is, all the doctors are in agreement.


David: I asked about the Zinc, although I already stopped taking it for a few days, to see if there was a difference, and he said he would like patients to be on at least 25 mg but in my case, he thinks 50mg is acceptable due to the inflammation & chronic diarrhea.

Thanks for the feedback on that. I take it you didn't feel any different having stopped it for those few days?

Let's hope the Cimzia works. But are you familiar with stem cell therapy?

I haven't seen much of a difference with the stopping the Zinc other than the indigestion seems to be better.

I have looked into stem cell therapy & have even had a drug rep for Abbot tell me to look into a clinical trial they are starting but I have to wait until I'm 18 unfortunately. In fact, a woman my grandmother knows, has a fmily member with Crohn's who is waiting to get approval for stem cell therapy at the University of Chicago! I am really interested in it & if Cimzia doesn't kick in, I am going to look further into more trials. It took a lot for me to get approved for Cimzia because it's not FDA approved for children under 18 but I went through the formal process of failing other drugs before Cimzia & my 16th birthday is in 2 weeks.

If the indigestion comes back when you restart it, maybe try the 25mg the GI said would be acceptable and see if that reduces the indigestion again? Or maybe try 25mg in the morning and 25mg in the evening? 50mg is just a lot of zinc in one shot