Horrible chronic stomach issues for years, doctor won't listen to me?

Digestive health
1

Hi, totally new here. I'm so sorry if this out of line, or if I'm not supposed to be posting. I've just really hit my limit and I'm at a loss. Ever since I was young I had issues with chronic constipation. It wasn't a big deal growing up. However, once I hit high school in 2012, I started to have horrible bouts of diarrhea. Immediately after eating a "trigger" food, which could range from anything from pizza to broccoli, I would be hit with intense abdominal cramps that wouldn't stop unless I passed the most horrifying diarrhea. It's always bright yellow and fatty, and my cramps would stop right after I finished flushing the food from my system. It was as if whatever I had eaten hadn't digested at all.

This continued for a little while. Eventually, in my senior year in 2015, I hit another block. I was so constipated, I didn't pass a bowel movement for about three weeks. I thought I was going to die. My doctor just told me to drink milk of magnesia (which did nothing) and put benefiber into everything I consumed. Finally my mom hounded her enough to send me to a gastroenterologist. I thought we were finally getting somewhere, but the minute I met the doctor I knew I had hit another dead end. She took one look at my mother (who is on the overweight side) and told me I needed to eat better. I begged her to listen to me, but she said that all teenagers had the same issues as me because teenagers have bad diets. She wouldn't even schedule me a return appointment or do any blood tests. 

Anyway, my symptoms are still continuing. I recently got diagnosed with Lupus in February. This has been hell on my body, and it seems to be making my stomach issues worse. I've been passing yellow stools and stools with white/yellowish chunks in it. I'm constipated all the time, and nearly everytime I go to the bathroom, I get these painful fissures that bleed. EVERYTHING I eat causes my gas and bloating. I always carry around gas-x where I go. I'm really at my wits end. 

I always thought I might have IBS, but I'm starting to get scared that my symptoms could be something worse. I'm 20 years old now, and I've been having these issues for about 8 years. I'm an adult and I want to be taken seriously now! I try my best to eat well. I don't eat tons of red meats or soda or dairy. Does anyone have any idea what my symptoms might be aligned with? How do I get my doctor to get her head out of her ass and actually listen to me?

2

1. Change doctor

2. It could be gallbladder issue.

Indigestion is a very common symptom.

Try bland diet and create yourself strick food diary.

3

Hi

Sounds like you have major issues with your digestion. Quite often bacteria from the gut can leak in through the bloodstream and cause all sorts of illnesses. If you can try and eat mostly organic fruit, nuts, seeds. Also add fermented foods, check out fermented foods on the net and read up on them. You can get fruit juices, herbal juices that are fermented as well. You could try probiotics, at least 50 billion CFU’s or more, anything less wont be enough. GP’s are hopeless at times, a lot of them lack empathy, and knowledge at the best of times. A healthy gut, leads to a healthy body, and alert mind. 

4

Yellow coloured stool can indicate an obstruction in your bile duct, or some type of bile dysfunction.  You need bile to help digest your fats.  If you are still severely constipated, I'd try something like a suppository (even a child's one) to get things moving.  Then I'd drink lots of water, eat lots of good fibre through different coloured vegetables, along with a quality probiotic ( as suggested by Gillian68) after your meals.  Eating things that promote bile flow may be a good thing too (daikon radish, raw beets, dandelion, artichoke).  You should consider tracking your food along with your symptoms to see if you can associate any symptoms with a specific food, which may be an allergy.  It can be frustrating to get your doctor to listen to you and its particularly difficult when you're younger.  Hang in there.  We have to be our own best advocates now a days and we also have to be more knowledgeable about our bodies.

5

I agree with the probiotics Flora critical care 50 billion.    I had diarrhea for year and half and I am fine now, can eat anything.   Will take about half bottle and it needs to be refrigerated.  You only take one a day.   I don’t know if you are from Canada or not but you can ask your doctor (which I would also change) or go to a drug store and ask them for a specimen kit and send it in.   It will tell you if there is anything wrong.   Health food stores really give you good info....that is where I bought my flora probiotic. Do not buy it if it is not in a fridge.    Good luck,

6

It sounds like IBS; having lupus may aggravate your symptoms. The white substance in your stools could be mucus which is common with IBS.  You may need tests to to rule out other causes other than lupus.  Change your doctor to get another opinion. You could try the low Fodmap  diet to see if that makes a difference.

7

The only place you can get a proper diagnosis is at a hospital E/R on their equipment.

 

8

I think you need to go to another GI doctor. My daughter's first GI doctor did not help her. I reached out on facebook for recommendations for a new GI doctor and that's how we found a doctor and she has been amazing and very helpful. Since then my daughter was diagnosed with ulcerative colitis, has had her colon and rectum removed. Had an ileostomy for 10 weeks before they did her take down surgery. She was doing well for a few months but is now currently having other issues. But her doctors have been very proactive in trying to get to the bottom of things. I feel really bad for you not being able to have a doctor that will listen to you. Please reach out on facebook and find yourself a good doctor that will listen. It definitely sounds like you need help.

9

Second that, change doc instantly!

IBS is an exclusion diagnosis, not first line diagnosis.

You need a GI doc, not a normal GP/PCP.

If that GI doc is on the same dismissal train, don't be afraid to change again.

Yes, asking around in facebook groups is often very helpful to get to the right doc!

You need transit studies (don't hurt), breath tests for malabsorptions,

breath test for SIBO (glucose),

abdo plain x-ray, scopes (gastric, colon),

maybe an MRenterography for anatomical assessment (again, doesn't hurt),

gallbladder, definitely a gallbladder test (HIDA scan?).

Calprotectin in stool, H.pylori check

A very rare reason I can think of is MALS/Dunbar or SMAS/Wilkie. Keep those ones at the end of list before being dismissed into the IBS draw if nothing showed up in other tests.

But before no good investigation has happened, there is no way to just call it IBS yet.

Food diary along the way is surely helpful to see specific triggers or even see, that nothing really stands out.

You can try probiotics (for months!) and different diets

(we did to all ends from FODMAP, no grains, no milk, no eggs, LOW fiber - yes, my girl has gastroparesis, fibre absolutely bad, GAPS.....nothing helped though than cutting out nuts and meat as it made it worse, but no eliminate symptoms. My girl has a physical issue, compressions of veins, arteries, nerves and duodenum, hence diets are secondary)

All the best! Hang in there!

 

10

Light-colored stools could be your liver enzymes get them checked

11

I hadn't thought of keeping a food diary, even though it seems so obvious now that I should be doing one! I'm going to start one and start looking for a new doctor. Thank you.

12

That sounds awful, your daughter sounds like she has been through so much. One of my worst fears would be having to get an ostomy. Thank you so much for the encouragement, I'm going to try standing up for myself and getting a better doctor.

13

I definitely will be trying a probiotic to try and aid my digestion. That seems to be the most common suggestion, and I'll do anything to get even a little minor relief. I've had success with probiotics in the past when I was taking some harsh antibiotics, but never considered implementing them into my daily routine. Thank you so much for the suggestion!

14

Thank you so much for the kind words. I'm really touched that so many people are commenting and making me feel less alone in this. I have read up a bit on issues with bile ducts, and some of my symptoms do align with that. My only concern is it's not all the time. I'll look into trying some new foods though, especially since I can't be running to the bathroom while I'm at work or school. Thank you so much!

15

Thanks so much for your reply! I definitely will be standing up for myself and looking a different doctor, or a GI that will test for everything before just labeling me with IBS. I'm honestly really scared something is super wrong with me and that I'm not doing the right thing to make it better. I did test for a very small gluten intolerance when I was a child, but the doctor said it was so minor. I've always wondered if that would come back to bite me as I got older. I'm definitely want to give the FODMAP diet a test run to see if it helps at all, especially since I'm so bloated all the time. The food diary will be something I'm going to start as well. Thank you again for the reply and the encouragement!!

16

Now you got me interested: what is 'small gluten' intolerance?

--> you can test blood for antibodies (not a 100% test)

--> gold standard (and usually always done in gastroscopy) is a biopsy of duodenum to see, if atrophy happened to the microvilli of duodenum as a damage (100%impact test)

--> you can get a genetic test (HLA DQ2 or HLA DQ8), if you had the predisposition for real Coeliac disease. (doesn't mean it is switched on or off, but if you don't have it, you cannot get it. The diet is extremely strict in Coeliac disease.)

--> many people feel better without or with little gluten in their diet being not Coeliac disease patients.

Others seem to have a high tolerance.

I for example only get bloating from gluten, if I bake a lot of bread and truly overdo eating it (fresh warm bread, I can't hold back....).

I don't have the gene, I don't suffer any GI issues at all, I can eat gluten with no problem, I am standing as clear of meat as I can (for ethical reasons of 'production'wink, but if I eat morning, lunch and breakfast gluten, yes, then I do get a rumbly tummy, too.

(I am in the abdominal forum because of my suffering vomiting, nausea, chronic pain child)

A lot of what we can eat and process and what not, is very individual.

Especially if having problems, first thing is a good food diary

(is exhausting work and write it down immediatly on some spreadsheet, it's so easy to forget what one eats during the day, beware)

with also noting symptoms and stool frequency/consistency.

Impact of food can be 3 days back, so it is really weeks of notes and trying to find a red thread.

Also very helpful for doc. You will be asked those questions about food impact, stool impact by food, symptoms.

For my girl there was nothing going together and all breath tests, biopsies (including enzyme tests), stool tests, normal. We still tried probiotics (special strains like LactoGG, rheuteri or boulardii) and digestive enzymes, but to no avail.

Yet it doesn't mean it doesn't help others.

Good luck!

17

Me again....also look up cholestraymine.   I took one box of that with 50 billion probiotics and viola my diarrhea stopped.  You have to get a prescription for it.   Won’t hurt to try all of this.   It is for a bile problem.....you mix with water, best to put in a small blender and then drink it.   Hope you try it....

18

Hi jessag

Have you had all your vitamins and minerals checked such as vit D and B12. Low levels of these vits can cause stomach problems. Also low levels of potassium and sodium and other minerals. You may have to completely change your diet as you have Lupus an autoimmune disease. Go completely gluten free, lactose free, wheat free, caffeine free, sugar free and eat prebiotic foods and take probiotics. Also, keep a check of your body alkalinity, if you have an imbalance this will cause stomach issues and with your health in general....Ask you doctor to carry out a complete blood count with a Serum B12 blood test....

19

I'm so sorry to hear of your struggles. I know how hard it is. For the constipation try yoghurt, high fiber cereals and vegetables and drink lots of water. Water keeps things moving in your digestive tract. The fact that you have abdominal cramps which are eased after a bowel movement seems to suggest IBS. There could also be a problem with your gallbladder (stones or sludge) which is preventing enough bile from reaching your intestines resulting in yellow stool. Definitely change your doctor. You deserve to be taken seriously. I cannot stand doctors who are dismissive. You can try prescription IBS medication to see if that helps. Also, do a liver function test and ultrasound/CT scan to see what's going on with your gallbladder. Good luck. Stay off fatty food for now.