Struggling and need help

I'm so sick of everyone around me just saying over and over "you need to eat".

I wish it was that easy. Its not just getting food into my body that's the problem. After I eat I really suffer with so much discomfort.

The health food store saleslady's advice is pretty darn safe. It comes with no guarantees, but why not give it a try? You could indeed be sensitive to dairy, and you might possibly benefit from probiotics (single-strength VSL #3 is expensive but requires no prescription). You'll know within a couple of weeks if it helps. One other possibility, in case you're dealing with irritable bowel syndrome, would be to add soluble fiber to your diet (e.g. Metamucil or Benefiber or several others).

You don't say what your GI thinks is going on - has he told you? 

My surgery was 2010  I lost 30lbs and still can not gain the weight. It took me almost 4 years to get some kind of normal life and struggle with food.  It is better now but not as good as I would like it to be.  I take probiotic every day VSL#3,  Align is also a good one,  multi vitamin, magnesium, vitamin B, calcium, Vitamin D I stay away from lactose. I drink two protein drinks a day with a handful of organic baby spinach carrot half of a banana, coconut water and almond milk in a nutribullet between my meals.  Stay away from gassy and spicy food I also don't eat beef.  Chew your food very well and drink a lot of water.  If a certain food does not agree with you,  try it again at a later time with small amounts.  I am maintaining my weight but can't seem to gain weight.  I know I don't eat to much fat because that is what bothers me. Have you tried Ensure or one of those type of nutritional drinks?  I also take an antibiotic everyday because of pouchitis.  I am able to eat foods that I couldn't eat before so you have to keep trying.  When I have wine or an alcoholic drink I always drink water on the side .  Everyone is different you just have to try different foods to see what agrees with you and what doesn't.    I know it is very discouraging when you struggle.  But we have to look on the brighter side that we are still here and able to enjoy our family and friends.  Everyone on this site always give good advice I have asked many questions and that seems to help me.  I know that I am not alone .  But keep asking questions and I am sure that you will get many responses.   Feel  better  Grace

My GI told me a while back he thought that I had a motility problem. In one barium xray test where they took pics or video at different intervals it looked as though the barium was moving trough quite slowly. Because of this he referred me to a GI specializing in motility issues. This Dr hasnt been too helpful yet. 

I have been drinking 2 or 3 Ensure per day but am slowing down on them. I think they are poor nutrition. Lots of corn syrup and sugar.

I'm going to try working with a clinical dietician at the hospital and also go see a naturopath.

Damn, how I wish I could eat the foods that I love.

It's going to take quite some time to figure out what works best for my diet.

I'm hoping to get a food allergy test done as well.

A little thing to gain weight is with healthy oil, I down a tablespoon of olive oil 2 or 3 times a day with some veggie juice. That's a lot of free calories. Also protein shakes with nut butters, almond, peanut, etc whatever works is free protein plus calories.

Just from my UC days I'd do some experiments like no gluten or dairy and see how you feel, but yeah I'd prefer you make your own healhy protein shake with whatever suits you over those crappy ensure or boost corn syrup carrageenan drinks.

Dear Jeffrey,

I don't know what is wrong with your specialists!  My son is 6'4" and weighs almost 100 pounds more than you do. When he graduated from H.S. he weighed 190 and was thin. Have they tested to see if you are absorbing the needed nutrients?  I hope you aren't malnourished.

I agree with the protein smoothies with fruit and vegetables.  I use PlantFusion protein powder that doesn't contain lactose and is gluten free.  It's actually free of soy, nuts and everything else that could cause an allergic reaction. I also eat mostly chicken meat and lots of Greek yogurt.  I don't eat the yogurt for the probiotics in it but think it keeps me from eating too much sugar.  I lost 70 pounds or so after my 2010 surgeries and have gained 15 of it back.  The difference is I had the weight to lose as I could never get rid of the prednisone weight. I had a good nutritionist that helped me with supplements along with Plant Fusion.  

I too miss spicy and other foods I like. I'd rather have my dysfunctional j-pouch than my nasty colon.  I'd suggest supplements for you but have other health problems, take a lot of them and they are expensive ones you probably don't need.  I think vitamin D, iron and B12 are the minimum blood tests they should run.  Scott and I both take large quantities of VSL#3DS.  One sachet contains 900 Billion units of 8 different probiotics. I could really tell the difference in the consistency of my BM's when I added the second one everyday.  My GI at the Mayo Clinic prescribes it for me. I don't understand a GI that wouldn't suggest trying a probiotic.  Not all of our problems can be solved with prescription medications.  You don't need to jump in with the expensive VSL#3DS right away.  Like Scott suggests try one and see if it helps.  My Internist suggests patients taking Align after needing large doses of antibiotics. I tried Atkins protein drink and it tastes better than Ensure plus I think is more nutritious.  You might want to check it out. I've only met one dietitian that understood the foods better for IBD sufferers.  

You had what sounds like a barium small bowel x-ray.  I've had several and the last one took forever. The radiologist said it was normal because there were no kinks, narrowing, obstructions etc.  I was concerned as it took 2.5 hours and the one I had a year before took 30 minutes.  Plus it was taken with only barium, which was the consistency of water, and no food in the pipeline.  I agree with you that there might be some problem with your digestion that this test won't uncover.  Several of my doctors think adhesions and scar tissue are to blame for my pain.    

I wish you could see another GI that would be helpful.  I haven't gone back to work either.  Like I said I have more health problems and with everything rolled up together I'm disabled.  I'm receiving social security disability insurance benefits as well as qualified for benefits from the private insurance I carried for myself. I'd rather be working.  

I hope you got a few ideas from our posts. 

Hello Jeff...I too lost alot of weight a few years back.  I had been on antibtiotics for pouchitis for quite some time and my weight just kept dropping.  I looked awful.  Everyone quitely whispered they thought I had cancer to my family.  I was scared.  But after no success with my Dr. in Pgh. area I took myself back to Cleveland Clinic.  Right away the Dr. there tested me for C-Diff...and I had it bad.  They said I probably had it not pouchitis that long.  With all the antibiotics I was taking I should have been tested regularly for C-Diff.  So they put me on a potent antibiotic for C Diff 30 days and with in 2 weeks I was feeling better.  But somewhere along the way I got Ghiraderra (m/sp).  Awful...pain, sick, couldn't hardly stand it.  So back again to more antibiotics.  Now I was down with weight 108#.  Finally, feeling a tab better but now on-going other issues back on antibiotics.  So with all that being said, it is a battle with weight issues, but perhaps consider asking for a stool culture just in case.  I too take probiotics daily.  I stay away from ALL CARRAGEAN products.  They are wicked and it is in so many foods.  Also...sugar...the root of all evil.  It's addictive and I grave it daily but when I slip I pay for it badly.  Even alot of those nutrition drinks are worthless.  Man made junk...stick to what our Good God created us to eat and drink.  It is very hard and expensive to eat healthy but start with just a few things.  Is there anyone in your area that specializes just in J pouches..? GI Dr. might not get the whole process of the J Pouch.  I wish you the best.

Patti

Just wondering how you felt with the ileostomy? Four years seems like a long time to be feeling so poorly and be out of work. Have you thought about at least diverting for a while and see if you start to feel better. I seem to be doing better finally, 6 mo post op, but i will always try to remember how great I felt with the bag, so I can go back to it if I need to.

If you're not able to replace those calories with something else, I would not cut back on the ensures. Yeah its not ideal, but something is better than nothing and at this point and your BMI is really low. How many calories do you think you get a day? My first priority would be to find a way to consume more calories if you're not getting enough. We aren't able to think clearly without enough calories. Once your body is getting enough calories to function, then start fussing over the details and how disgusting corn syrup is. 

I've had really good luck with naturopaths with problems like your having and have always gotten great advice on what to eat. I've also had luck with acupuncture. One acupuncturist told me to start off eating congee as its really easy to digest. Starting off slow and not jumping into a bunch supplements and complicated meals (I consider this anything with more than 5 ingredients) has always worked better for me. Here's a pretty good recipe for congee if you are interested: http://www.epicurious.com/reci...rridge-congee-103051. 

I'm always skeptical when someone swears by something. Everyone's body is so different, unless its a blood relative I usually take it with a heaping spoonful of salt. For instance, I've tried the advice the sales lady gave you and it didn't work for me. When I went gluten free I lost even more weight. Not to say its not worth trying, but I tend to give more credence to advice given from perspectives that are not so black and white.

Are you having any other symptoms in addition to being gassy and bloated?

In regards to finding a naturopath/acupuncturist/ayurvedic/etc., I like to make sure they are also open and educated on western medicine since I rely on western medicine a lot. 

Don't give up! There has to be somebody out there that can and will help you. The Cleveland Clinic and Dr. Remzi have been my saving grace. Have you considered traveling for help?  

Meditation really helps me keep going when I'm struggling for a solution. It can feel cheesy, especially for the hard-boiled type, but I really recommend giving it a try. I'll feel a difference within a week. Here's a good selection of short guided meditations I enjoy: http://www.chopra.com/ccl/guided-meditations

Keep us posted on how the naturopath appointment goes. 

Why not try the probiotic and digestive enzymes?  Your symptoms sound very much like a food intolerance.  Try gluten free first as it is a very common problem.  Try to eat rice in chicken broth.  Make a nice homemade chicken soup without noodles.  Use rice instead.  Well cooked carrots.   That is my go to when I feel sicky.  I also use probiotics and digestive enzymes they have made a world of difference.  Sending you hope. xoxo

I have now quit dairy for the most part. It may be an ingredient in some of the foods I'm eating but no more drinking milk or eating cheese etc.

I browsed the health food section at the grocery store yesterday and picked up some almond milk. It tastes quite good. Also picked up some milk drinks made with rice, another with hemp and another with coconut.

Tomorrow I go to see my family dr. I'll have him send me for a blood test to see if I'm deficient in vitamins etc. My eczema has been really bad lately. I need to get that under control. Perhaps he can prescribe some cream or something for that.

The following day I go to see my GI. I will ask him to refer me for food allergy testing.

I will soon go see a naturopath. I was given the name of a good local one. I think that she will be the one to make a difference in my health. I need to learn what to eat.

Anxiety has been a problem for me as well ever since my surgeries. I find it hard to relax and feel calm. I'm looking into perhaps going for some Cognitive Behavioural Therapy. I might also try some massage therapy. I want to try meditation as well.

I'm hoping that in a few months time I will be on a much better path.

Look over the FODMAP diet.  It's a diet to limit sugars that cause symptoms in IBS patients, but works with us, too... especially since you're saying you have bloating and gurgling all the time.  FODMAP means Fermentable Oligo-Di-Monosaccharides and Polyols.  Stanford has a very short PDF online about it, but there's also books written by the people who started it:

https://stanfordhealthcare.org...df-lowfodmapdiet.pdf

I found that peaches and apples don't work for me, among some other things. 

You eliminate all of the potential issue foods, then slowly reintroduce them.  The theory is that the bacteria in you or I isn't likely the same, so MY triggers and YOUR triggers likely won't be the same, either.  Which means my food triggers may not be yours (or they may be... but you have to test it out).  It sounds like you're already eliminating lactose... that's a category of sugar. 

Onions and garlic are supposed to be big triggers, but they don't bother me.  I'm more bothered by the fructose and galactan groups. 

Also, have they checked you for Celiac?  I know everyone is on that bandwagon lately, and the "sugar" in wheat IS a potential trigger for gas/bloating, but I ask this because my friend's husband (who doesn't have IBD) is a tall man, who con't for a time to lose weight, despite everything he tried.  He also became anemic.  FINALLY, some doctor put two and two together, and he had an endoscopy, and they found he actually had Celiac, which was the reason he had failure to thrive, despite eating what everyone around him thought was a "healthy" diet.  They can do blood tests to look for Celiac triggers, but the best way to check is by endoscopy (visualization) and biopsy samples from the duodenum (past the stomach). 

I don't know.  Just some other things to consider. 

@allswell,  

I know you are trying to help and am glad you are doing better at 6 months.  You asked if Jeffrey had considered going back to an ileostomy.  Many of us feel that is the last resort, kind of like getting our colon's removed was the last resort.  Further major surgery in it's self is dangerous, etc.  

Jeffrey's recent pouch scope was good with no apparent physical problems. With so many variables that factor into our health it would be a mistake to take out a pouch that appears to be healthy.  My take down was 4 years ago and my pouch is dysfunctional but none of my doctors think that I should go back to an ileostomy.  I haven't been able to go back to work going on 5 years now. Before then I'd only been able to work part-time for years due to all of my health problems, not just UC.