Gastroparesis and/or Crohn's

singingflutelady

I just got out of the hospital after 25 days for a Crohn's and (new diagnosis) severe gastroparesis flare (i had 54% left in stomach at 4hrs during gastric emptying study- normal is 10%). I think I was released too early as i still feel like *kitten*. My whole body (especially stomach but all my joints) is sore and I'm always nauseous. Anyone here have severe gastroparesis? I am trying to eat small meals 5-6 times a day low fibre and low fat but my stomach is still protesting. I'm finding it hard as my natural tendency is 21:3 IF. What foods are safe for you? I'm eating a lot of white carbs, white meats and pudding plus meal replacement shakes. I'm 1 lb above the underweight cut off so I really can't afford to lose any more weight. I feel like I should be on tpn, tube feed or full liquids but my GI never offered those. How do you cope? I have an ileostomy (had a proctocolectomy because of crohn's 6.5 months ago) and my output is very messed up because of the gastroparesis I'm pretty doped up at the moment: 4 50mg gravol, 2-3 2mg dilaudid, 2 10 mg dom peridone, 40 mg pantoloc, 9 mg entocort, 50 mg trazodone and humira and really hope I don't have to live like this the rest of my life

janejellyroll

I don't have any experience with this, but I'm sorry you're going through all this. I hope someone is able to offer some relevant advice.

singingflutelady

Thanks. I'm just frustrated as i was just beginning to live again after 2.5 years of hell. I really thought I'd have a lot longer in remission after getting so much removed in May. Not only is the Crohn's back but now i also have gastroparesis. My GI is not even sure what to do with me. I was finally able to basically eat whatever I want but now I'm back on a very restrictive diet again.

GottaBurnEmAll

Damn, you sure can't catch a break. I hope someone can offer you some advice. I'm so sorry you're going through this.

lemurcat12

Oh, darn. I also have nothing helpful to contribute, but I am very sorry you are going through this. Not fair.

Hamsibian

I am so sorry. I don't understand why the hell your doctor won't give you TPN. If there's any way you can see a new doctor or travel to clinics like Mayo or Cleveland, do it. I have never had gastroparesis or anything removed (yet). But dealing with Crohn's for 14 years and only a few months in remission, I know what it's like feeling so restricted with food and overall lifestyle. My heart goes out to you.

Do you have facebook? You should join the Girls With Guts Private forum. It's an amazing support group for women with IBD, many who have ostomates, j-pouches, surgeries, etc. I will bet that some of them have gone through similar situations.

Here's their main page: http://www.girlswithguts.org/

crabbybrianna

I’m really sorry this happened to you. My husband has gastroparesis and has been hospitalized many times, I also do all of the cooking in our house so I know all about what he can and can’t eat. He eats pretty much the same thing every day, low fibre, low fat. White bread and white pasta. He can eat small amounts of vegetables as long as they’re cooked well, but they’re very small amounts. He can eat ground beef (in a pasta sauce, for example) as long as I drain all of the fat out of it. Low fat fish is also good.

For some reason poultry fat is the worst, and has had the most problems with dark meat parts of chicken and turkey. Butter doesn’t have the same problems as meat fats, so he can have that. I remember a few years ago when he got out of the hospital he ate nothing but Stovetop stuffing and cranberry sauce for weeks. It was all he could keep down and eventually the nausea went away and he could add more foods back.

He was diagnosed with gastroparesis in 2012, so he has had a few years to experiment with what works and what doesn’t, and the foods that do work he pretty much eats every day. He is supposed to eat small meals throughout the day but he doesn’t like that. He will have anywhere from 2-4 meals, depends on how hungry he is.

Even with eating the same things every day, he still goes through periods where he can’t keep food down for a week or two at a time and ends up in the hospital with severe nausea and vomiting. We don’t know how to stop this from happening, since his diet never changes.

RodaRose

I had a friend with Crohns. When he was younger he was on various steroids. He has gotten much better over the years. I believe that Remicaid helped him.
The foods that help can be different for each individual. Try not to fret about being underweight.
A few pounds lost will still keep you close to normal.
Go back to the ER or call your doctor whenever you need to.
-->Also ask when he/she can reduce one of the meds if you feel that the side effects are affecting your mood.
Keep calling the doctor's office until you feel that you are on the road to recovery.
And try sticking with only the puddings and replacement shakes for a few days and see what happens.
What is the trazodone supposed to help you with? Anxiety? Eating? Depression? Weight gain? Sleep?
You can also ask the pharmacist if any of the meds you are on are interacting with each other.

shaumom

I am so, so sorry it's been so awful for you lately!!

I have a rare disorder that often has Crohn's comorbid with it. And my disorder can result in chronic inflammation in the gut, intestines, and/or bowels, so is often misdiagnosed AS Crohn's. And my condition can have others symptoms that can be triggered by the act of eating, or by the size of meals, or by certain foods, so eating often has to be managed a lot and can just...well, suck a lot.

So while I do not have Crohn's myself, nor gastroparesis, I really sympathize with some of the difficulties you are going through (so freaking big hug!!). And hope that some of the stuff I do might still relate.

And also, in my support groups I know a lot of folks who either have it, or who were misdiagnosed with it. And so I know a lot of folks who went delving deep into what might help Crohn's symptoms, at least, because the treatment wasn't working, either because they didn't have it or it was made worse by the second condition.

So...here's what I got, for what it's worth.

For mental coping -
It helped me sometimes to do other things WHILE eating. Because eating so often was just a chore, and I knew I was going to feel bad after, and at one point I was down to about 5 foods plus salt, so food itself just felt like I would KILL to eat something different. Different flavor, texture, just something different, you know?

So watching TV while eating, helped some, or listening to music I liked, or literally doing something else and popping in to the table to eat a couple bites and then going to do something else again.

And I tried to start focusing on hobbies and such that didn't involve food. Gardening, for example (I know of some folks who do bonsai, or orchids, because you can do it inside even when you feel like crap), or crochet or knitting (same thing), anything that you can do when you feel awful, and that food isn't involved in (unlike meeting with friends at a coffee shop, or going to the movies - although I still do the latter, LOL).

For pain, there are actually some good biofeedback results for dealing with chronic pain if it does not let up. I would actually really recommend it, honestly.

for physical coping.
for Gastroparesis or Crohn's- I don't know if you have been able to look at online forums for these, but I would highly recommend. In large part because both of these conditions are in the category of 'physical problems that are being researched right now.' Which means that unless your GI doc focus specifically ONLY on these, then he is likely behind the times. He, or she, will know what he learned in med school (which involves text books that take about 10-15 years to pull together, so are already out of date), what he learned from drug reps who make drugs you can use for this condition (the statistic on how common this is is rather depressing), or what he learned if he went to any conferences on the conditions.

But folks in the forums are, as you can imagine, REALLY motivated to ferret out the most recent research and practices that may help you. You sometimes have to winnow out the woo woo cures, but you can sometimes find some very good information that you can use here and now that is non-prescription related but more lifestyle related, you know? I have done this and honestly, some of the research completely changed my life and is why i can eat more foods now. I view it as time that MAY not bear fruit, but if it doesn't...it was just time. And it may provide something that helps, so it can be really worth it.


re: Crohn's
I know more about Crohn's, so figured I would pass on what i know.
First - did your doctor ever test you for celiac disease? A higher than normal percentage of people with Crohn's ALSO have celiac disease, but it can be overlooked if they already know you have a disease that makes your gut hurt, you know? But it could impact your flare up or ability to heal or motility, even, so might be worth checking to see if you were tested.

Second, did your doctor ever have you do an elimination diet? Like ever? I only ask because of the comment about eating what you wanted and honestly... I don't know anyone with Crohn's who could do that without it flaring up. From what they have told me, they all have food triggers that will make symptoms worse. And they have to figure out what those are (with an elimination diet, because it's not allergies, so there IS no test except - did this make me feel like crap), and then they have to avoid them, or at the very least keep the amounts low.

And sometimes some of these foods would cause low level problems that would build up over time, so that could be an issue too. When you are feeling better, I would seriously consider it, because odds are very high you will keep having flare ups until you figure out what the problem foods are.

Most folks I know who have stopped flare ups figured out the problem foods and just avoid them...and that was it. That was all it took. Some don't have it turn out that well, but they still reported much fewer symptoms after identifying problem foods.

At the same time, very few of these folks had their doctors recommend this, sadly - only the ones where the doctor specialized in Crohn's, typically. The rest of them heard from other Crohn's patients who had improved and followed their lead, you know?

Re: foods that can cause problems in Crohn's
Any ingredient can do it, although there are some triggers that seem more common. Since you asked what foods people were eating, I thought I'd list these common triggers, just in case.
--Dairy is a common trigger - lactase to digest lactose is made in the villi in the intestines. Which can be damaged with a lot of inflammation, and so can cause you to become lactose intolerant. And it is one of the more common ingredients in meal replacement and nutrient shakes, so that might be worth checking, see if there is a variety that is dairy free that you could try or doc would recommend, maybe, if it seems to be an issue?
--spicy foods
--greasy or fatty foods - this can include things like cream and thick sauces (so might include pudding)
--high fiber foods, like whole grains, fruits, and veggies, especially during a flare
--nuts and seeds when whole (as opposed to nut butters)

But aside from these, it really can be anything. Carrots, broccoli, honey, anything. And I would add that it can be things you eat that are not FOOD, too.

It can be components of foods, like salicylates - some foods are naturally higher in salicylates, and some folks trigger to them. There's a website out there for salicylate sensitivity, i believe.

Or it can be contaminants from processing agents or preserving agents, or tiny ingredients that aren't the main one. For example, my disorder triggers to sulfites (which can trigger Crohn's, too), and it's a bleaching agent used to whiten some salts, it's a preservative in wine, it's in lemon juice concentrate, it's a processing agent that remains in corn starch, and it is used on dried fruit and some dried spices to prevent fungal growth, too. There are certain thickeners that are becoming more common that can be a problem, like xanthan gum. Certain dyes, like anatto, are known to be rougher on the gut and can cause problems.

And the thing is - these are going to be present in all our foods these days. And with gastroparesis limiting the amount of raw fruit or veg you can get, so you need more processed stuff, you'll likely run into more of these oddball little ingredients in your food, and they absolutely CAN be a trigger, so it can help if you can keep track of them as time goes on, to make sure you notice any potential pattern, you know?

In my experience, sometimes I could tolerate a certain brand of food only, because it was the only one that lacked a common filler or dye, etc... So it can be worth it to see if there are other brands of foods you eat, see if you have less nausea with them, if you haven't already done that.

Last thing that may, or may not, help - herbal teas. I started exploring anti-inflammatory teas, or teas that slightly inhibit mast cells (the cells that release inflammatory chemicals, which is what my disorder concerns), and they have helped a LOT. Olive leaf tea was one. Tea made from fresh thyme (which I then dried) was another. Guava leaf tea is another. And ginger tea. Or ground turmeric added into tea (not water soluble so tea does nothing). Some days, mind you, I couldn't tolerate the teas at all. Some days I had to take them in sips throughout the day, or with a little food, or I could only tolerate one or a few of them. But things high in many bioflavonoids were helpful for Crohn's type inflammation (don't know that it would do a thing for gastroparesis, but I'd guess not, honestly.).

And....sorry this is so long. >_< Some of this may be completely irrelevant, but having been in a place where I was feeling so down about food, and pain, and having to eat every day when it hurts to do so, so...just put a bunch of this information out there, in case it helped at all.

I hope you feel better soon!!

singingflutelady

@shaumom Thanks. I've had 2 upper endoscopies this year with biopsies and no sign of celiac disease. White bread is my go to and it doesn't bother me. My Crohn's atm is a very rare variation called gastroduodenal (though just gastric at the moment) which only 4% of people with Crohn's have. The Crohn's is in my stomach. Combined with the gastroparesis it's a completely different presentation than my previous Crohn's colitis/perianal Crohn's

My doctor is clueless with nutrition. I have done elimination diets by myself and know my triggers. I was only able to eat whatever i wanted because i had my colon and rectum removed and those were the only places (other than perianal) i had disease at the time. Whatever i wanted= salad. Still didn't eat spicy or overly fatty. Having an ostomy makes the experience of diarrhea or whatever much better. Before i had surgery i was doing modified low fodmaps and low residue.

I have secondary lactose intolerant so i don't eat much dairy.

The gastroparesis diet is low fiber(low residue) and low fat.

COGypsy

I had idiopathic gastroparesis several years ago. Honestly, I'd cut way back on the solid foods until your symptoms are under better control. When my GP was at it's worst, I relied on an invented mixture of a scoop each of powdered lemon-lime Gatorade and Syntrax Nectar protein powder in Roadside Lemonade flavor. The Syntrax Nectar line of protein powders have a juice-like consistency, not a thick shake, so I was able to better tolerate that combination than say, Ensure type drinks. I'd also try and throw in a liquid multivitamin as well. I also drank a lot of fresh juices and eventually fruit and vegetable based smoothies.

Low FODMAP diets are also working well for GP patients, if that was successful for you before. There's a low FODMAP meal replacement brand - Orgain that I believe is available lots of places like Walgreens which a lot of the folks in the GP community have successfully used, although I haven't personally tried it. There's a website called Living (Well) with Gastroparesis that I got a lot of great information from. The site's owner was eventually "cured" with a gastric implant, but the information she shared along the way was invaluable to me.

shaumom

@singingflutelady So happy to hear that they found no celiac disease, but also sorry that celiac disease wasn't a possibility that would be an easier fix than having all this stuff happen to you!

And ah, I see you didn't have to worry about triggers. Totally makes sense. Sorry to inundate you with info. that you already knew!

I am so sorry that things are going crazy for you again, though. Wish there were some easy answers for you.

middlehaitch

Just sending a big (((( )))). h.

fishgutzy

My son is 22. He was diagnosed with Crohns about 3 years ago, after several years of tests. At first his symptoms had them thinking it might be cancer. Lymphocytic anemia.
He came close to needing surgery. Luckily they did find the right meds. He is taking humira and delzacol (?). Finally achieving what the doctors call remission.
Watch the trigger foods. My son can take some wheat but not a lot.
Hemp oil helps too. He takes a tablespoon a day. Then rubs some in his face for the mild eczema.
Having watched how much this disease has affected my son and my wife, I wish you the best of care and health and a clear pathway to remission.