How do you cope?

[bitterkrill]

Hi, new here.

I haven't been diagnosed with crohns or IBS. Well, the doctors initially thought it was just IBS and anxiety but they had a discussion between themselves and they suspect it's systemic sclerosis which has a huge impact on the whole digestive tract. It's an autoimmune condition.

I am having a major problem coping. I cannot eat a lot of foods. I can't consume fructose in any form, lactose, gluten, soy and a lot of vegetables. Even 2 grapes is enough to give me diarrhea. I cannot take inflammatory foods like eggs or nuts/seeds etc as they kick off my inflammatory response and i feel even worse and end up looking like jabba, my face just gets really fat, along with my belly and hips. I can ping under my chin and it'll wobble like a fecking jelly. I'm not fat either but i end up looking a stone heavier.

I am constantly bloated, filled with wind, tired physically and mentally, dealing with constipation or diarrhea, gurgling in the stomach, pain in the lower stomach, burping loads after eating or drinking. It's a fucking nightmare.

This morning i had 4 bouts of diarrhea before work, had to get a taxi which i nearly shat in. I then had more diarrhea at work when i eventually made it to the bathroom. I then nearly fainted in town(because fuck eating) and i had more diarrhea. My stomach is still going mental(cunt of a thing)

I had a relationship that was just ridiculous because i was crapping it constantly that i would crap myself in front of him/in his car/in his bed. It was horrendous. He'd want to go on long drives and all i could think about was, what if i shit myself today?

Or the nice bouts of wind. Makes for a fantastic sex life, huh?

I can't eat so much, if i was to just eat meat i will never have enough energy as i have a physical job and no nutrients either?.. I never go out anywhere unless i have to. I had ambitions and now i can't be bothered because of this stupid disease.

The doctors never listen. They have performed some tests and given me tablets for the gastritis(that don't work) and tablets to slow the gut down(that just cause me more pain) I'm waiting for this clinic appointment and they sent me away from gastroenterology BEFORE this new "diagnosis" so i am getting literally no help. I've told them numerous times that i am not coping and i will end up getting rid of myself. My previous gastro doctor told me "everyone looks different, everyone has different digestive systems"...I'll probably get sent back there and i can't wait to laugh in his face for being so, so wrong.

I see people getting married, having kids, going away, having jobs they really enjoy and im just sitting here thinking of whether it would be a good idea to stick a knife in my throat.

Can someone help me out? What do i eat? Any meds that are good for a gut that seems incapable of digesting any foods? I don't care about eating fruit but fructose and other pishy additives are in a lot of foods and im so sensitive to them. Even quitting dairy is futile when the coconut milk you get has loads of added crap in it. I'm considering making my own foods. I really need some diet advice, what do you guys eat to help calm your gut? I am assuming it's just simple foods? Does anyone have a diet they can give me? Just a little example of typical breakfast, dinner etc and any meds that really help. My gut is mostly just not absorbing foods so i just crap it out the other end the way it came in.

I just need some advice before i go insane.

Thanks! (sorry for swearing)

 

[ronroush7]

Hi. You might a bland diet until the doctor can get you on medicine that will get your disease in remission. You also might try one of the nutrition shakes. Some people do a food diary to find what foods upset their gut. Hope you feel better soon.

 

[ronroush7]

Hi. You might a bland diet until the doctor can get you on medicine that will get your disease in remission. You also might try one of the nutrition shakes. Some people do a food diary to find what foods upset their gut. Hope you feel better soon.

 

[Cat-a-Tonic]

Last year I got to the point where I couldn't digest anything, even one banana would send me running to the bathroom 10+ times. So I was hospitalized, and they put me on a liquid elemental diet. I'm not sure if fructose is in those drinks, but I doubt it - they're made to be very easily digested when you literally can't digest anything else. The drink I had was called Vivonex, and there are other drinks as well - Modulen and Peptamen are the two other ones I can think of (I'm sure there's more besides that). Your doctor might be able to give you some samples, and if those work for you, you could try doing just those drinks for awhile to let your insides heal and calm down a bit before you re-introduce food. I can tell you that being on a liquid diet for a few weeks really helped me immensely.

As for what foods to eat, I go for very bland, white, low-fiber foods. White rice, potatoes without skins, plain pasta, baked chicken or fish, eggs, toast, etc. Those seem to be the easiest for me to digest. My typical breakfast is a smoothie, for a snack I'll have an almond milk yogurt or a small amount of oatmeal that's been soaked until it's mushy. For lunch I usually have something like eggs and turkey bacon, or rice and fish - same for dinner.

Have you kept a food diary? You might want to try that, you write down everything you eat and how many bathroom trips & what consistency, and any other symptoms or pain that you're having. Then, over time, you can draw correlations between food and symptoms, and you'll have a better idea of what foods might be safe and what doesn't agree with you.

I also want to say, you sound very depressed. Depression affects a lot of us, and it's not just that you're sad because you're ill - it's literally a physical symptom of the illness. When there are changes to the gut, either inflammation or changes in the gut bacteria, that affects how serotonin is absorbed, and it often causes depression. If that helps any - I know it helps me to think of it as a symptom rather than just that I can't snap out of feeling depressed or like it's some sort of personal failing (not that depression is ever a personal failing, but it can sort of feel that way sometimes). I hope you consider reaching out to your medical team for help - a lot of us on here take anti-depressants, there's no shame in it and it helps a lot of us. You've also mentioned having thoughts about harming yourself, and I really hope that you reach out for help before going down that route.

There's always someone on the forum to listen and to commiserate and offer help, so please do keep us posted on how you're doing and reach out to us if you need more support. We're here for you!

 

[bitterkrill]

Hi, thanks for suggestions. I have started a food diary today. It would be good to show the doctors but last time i did this, they didn't even read it. Just skimmed through it. I had a look at that drink and yeah, it doesn't look like it has anything bad in it(apart from Maltodextrin). I actually cannot eat a banana, i had one the other week and i had terrible stomach pain for 8 hours and then loads of wind. I was in agony at work.

I've considered going on something like HUEL which is a liquid diet but they add other things in and im worried if i have it i'll end up getting the runs. I had diarrhea again this morning but i have cut out potato chips to see if that helps the diarrhea, i can only get away with having them when i have a lot more to eat and right now, im trying to sort my diet out big time.

I probably am depressed. I tend to have a laugh when i get these stomach problems, otherwise i'd probably cry. I've had this for so long but it's getting so much worse and im just worried about what i'll be like in a few years time. Ive contacted my doctor again to ask about when i'll be seeing the specialist in regards to this condition and i'll push to get sent back to the gastro doctor. Unfortunately, many of those foods i cannot eat. like eggs or bread, even gluten free bread because they put so many other ingredients in their bread that hurt my stomach(tried them many times before) if you look at the back of the pack, its shocking how much rubbish is added, i'd rather eat gluten than all of that. Something like grape juce concentrate is enough to give me the runs and eggs are super inflammatory, i lived on them before for a while and even though they're technically healthy, i had fluid retention everywhere and felt terrible. I think that's what is so frustrating about my body, it's so sensitive because of this inflammatory disease that even simple foods are out.

I'm going to look up some simple recipes and see if i can make up a plain diet to have everyday until i get something that may help with this.

Thanks for the replies

 

[woops!]

Have you looked at different diets like Specific Carbohydrate, GAPS, Paleo. There are some others out there. I want to say ther is one called the autoimmune diet. I have done the SCD diet before. You start out with a broth that you make for a few days, and then add foods slowly. This would give you a chance to really pinpoint what triggers you. It is hard when you are limited on what you can eat. Good luck.

 

[MizzSarah]

I'm not coping well these days. The feeling of being unwell and dealing with those unwanted symptoms are just playing with my mind. Not to mention life not working out as I wished it would. As I work as a teacher I just was told yesterday that my hours got cut for the third time this school year Very stressed out.

Just trying to take it a day at a time. That's all we can do

 

[ronroush7]

Supporting you