Bloating and the issue of Crohn's disease and daily living

Good day everyone,

So.. I've been diagnosed with Crohn's disease for over 8 years now, when I was 12. Things have been very awful, but from my 16th to my 19th I felt so healthy that I didn't even noticed I had Crohn's disease at all! Now much has happened lately, as life always does. Crohn's disease is not the only thing I have, I'm also dealing with PTSD, anxiety issues and I am a very sensitive being which also brings a bagage in the Western Society we now live in. At least, in my experience. I'm telling you guys this, not because I'm wanting to go off topic, but because I thought this would be a good thing to share too, for these mental things can also be a cause of the symptoms I am now dealing with. So, now that I am 20, I start feeling many symptoms again, the ones I notice are: light stitches in the stomach, very nauseous, dry skin, and most of all.. The one thing why I especially wanted to create this topic is: bloating. Lots, and lots of bloating. I feel bloated every day, it often already starts in the morning when waking up and when I eat, it gets even worse. I daily eat pretty healthy; for breakfast I'd have something like a smoothie with fruit and vegetables and also a superfood like spirulina, maca powder etcetera, healthy vegan pancakes, yoghurt with muesli and fruit.. And for lunch and diner I always eat a healthy amount of vegetables combined in a shape of pasta, noodles, rice and sometimes a meat substitute because I'm a vegetarian.
I have this bloating for like 2 months now already, mabye even more, and there seems to be no end to it! It also effects my daily life a lot. I feel too insecure and awful to go outside sometimes.. And because of this I lack in school presence. I have difficulty finding work, because I can't give my 100%.. I might even lose my home, the place where I live in with my boyfriend, because I almost can't afford it anymore due to not being able to give my 100% self and I have difficulty asking for help again because I've been let down by the goverment many times now. I've asked my doctor for help but he says he has no glue what's going on with me. He says that my Crohn's disease is doing fine and that's it. No further help. In my life, I've never really experienced an expert who really has some good knowledge about this disease. In my experience of living with Crohn's disease; I never had and still have no problems with diarrhea, nor the opposite. I go to the toilet 1-2 times everyday, a healthy amount. I don't seem to have the 'stereotype' problems, but what I do notice is that stress and temperature affects me a lot. I have felt pain in ways I never even knew excisted. I have been operated due to severe inflammation in the gut and the duodenum when I was 13 years old and that's sort of it. I share these experiences too, because mabye it helps with coming up with a solution and to brighten the possibility that someone doesn't feel alone in it. Because I know it can feel very awful to stand alone in such things.
In any case, I'm a bit lost in what to do, so, I wondered, mabye one of you guys could help me out here?
The solutions I've already been thinking of myself is:
- Go and find another doctor
- Do some fasting
- Starting a SCD diet or something similair
- Bacterial overgrowth ? Doing some more research on it.

What do you guys think?

PS: My boyfriend studies Biology at the University so he's helped me out a lot already! He's also very good at being kind and giving a lot of love, which has helped me too a lot. But still, also he doesn't have a glue what's going on, we're trying out some small things like taking a dosis of Kurkuma daily, or coconut oil since that helps a lot with bacterial overgrowth. And it helps, but not with the bloating. It's such a mystery and I am willing to solve it out, mabye you guys can help me a bit more out in this? It'd mean a lot to me.

Thank you in advance.

Lots of love,
Chelsey

Hello dear one,

Thank you for responding! You sure helped me out a lot already.
First things first, I'll answer your affable questions below:
how are you medically managing your Crohn's disease? Medically, I've been managing my Crohn's disease only by the doctors treatment: azathioprine 2x 50mg 1x25mg, every evening by dinner. I've been doing this for as long as I remember, it kinda was the first medication my doctor adviced when I was diagnosed IBD by the age of 12. During those years of intake, I've experienced good and bad times. I guess my body is used to it now and perhaps that's also why my doctor sticks to it, I'm not sure. I do experience skin problems when taking this medication (this is just an interested fact in my opinion, nothing to do with the subject actually haha)
What medications are you on? Besides that, I also take one vitamine B12 pill, for the located intestines that care for vitamine B12, have been cut out due to severe inflammation. Besides that, I am also vegetarian. I also take 1-2 pills Magnesium Citrate a day (so the one Magnesium that doesn't cause diarrhea, to announce shortly), for people in general (in the Western Culture I can say) get too little amount magnesium in their body to function properly due to the food chemical industry. I'm taking the Magnesium Citrate for a month now and it definitly helped me with restless muscles and fatique! (this information is besides the bloating subject, for I love to help anyone where I can)
Where is your disease located? The last time where my disease was located, is in the area of the appendix (the appendix has been removed along with the bits of the intestines where the inflammation took place when I was 12, to be sure the appendix didn't get infected so I had to be operated twice) and in the duodenum. I'm not sure where else, but I feel the stitches in my whole small intestines.
When was the last time you had diagnostic tests to see if your Crohn's is active or in remission? The last time has been about a year or so. He said it was in remission.
Do you have strictures in your intestine? To be honest, I have no idea. I want to know more about it tho, dive more deep into my own illness, so that I can understand my body more and nurture it well when needed. I'm on my path of doing so.

Now that I've answered your questions, I'd like to say that I'm very thankful for the advice you gave me on visiting my doc first. To be honest, I've been avoiding this for a long while, because I felt that my doc couldn't help me with any of the problems I'm dealing with. But now that I know I have to take action, not only for myself, but also for my loved ones, I'm thinking about switching from doc and find a doc where I feel comfortable with and whom I trust and connect well with. I feel very positive about this.
I've indeed been thinking about the possibility of SIBO as well. It feels like it. Haha, mabye this sounds weird but.. I can actually feel the bacterial overgrowth within me. I can feel the overgrowth of houses from the bacteria in my gut. It feels very heavy and chaos. And oh, how I dream about feeling light in my gut again.
So I'll do this first. Go find a new doc, discuss and test the bacterial overgrowth and if so, take a treatment for it. After this (besides if it is a bacterial overgrowth yes or no) I will take your advice on the FODMAP diet. I'd like to start a personal detox, liking to begin with 8 days fasting and after that, starting the FODMAP diet gently with a food diary so I can always go back to the diary when I forget. I for sure will discuss this with my doc too, for it is safe to do so. And I will for sure keep you (or/and anyone else) up to date of all the progress if you'd like to

Thank you and my dear regards.

Hello AmorDragonfly, I, too, am a new member. I, too, am experiencing a lot of bloating lately. My heart goes out to you. It's horrible.

At the moment I am about to go on Dr Gundry's Lectin Free Diet, from his book, The Plant Paradox. I got a Kindle version of it from Amazon, and am about to re-read it, and start it. The information is fascinating. He lists an example of healing someone, curing? them of Crohn's disease in his book. His diet covers all sorts of antinflammatory conditions. He speaks of how lectins in plants, are their self defense mechanism, to put off insects, animals AND humans from eating them. This can play havoc with some people's digestions.

I have had Crohn's since I was 27. I'm 54 now. I have got away with not being on any meds for most of that time, and just got used to a very runny tummy. I would have a bad flare here and there, but after about 2 years on the Imuran / azathioprine, I would go off it, because it made feel sick with everything going around, fatigued and sore joints, I preferred to take my chances with the fast tummy.

But over the past 2 years the crohn's has been unsettled, and I saw a GI just in time to have a flare up and be put back on meds. I had a colonoscopy after 19 years of avoiding them, and apart from typical crohn's inflammation, all is clear. Phew.

The GI recommended the Imuran and I said, oh, I don't like that drug. I asked, what happens if I don't take it? He said I risk the nerves in my colon dying off. I'd never heard that before.... I went into a flare, and needed the prednisone and decided to start the Imuran again as well.

But since starting the drugs, I am having this HORRID bloating you speak of and struggle with. I've never had that from prednisone before. But it's been a long time since I was on high doses of it.

I have gone from a fast digestion to a very slow, bloated, distended, constipated one. Of course I am wondering in the back of my mind.....have I actually killed off those nerves in my colon, already? argh! I don't see my new GI till March. I am hoping it all resolves itself by then.

I did a liquid diet for a day or two....and that helped! But, it's tricky since I need to eat to take my meds, to coat my stomach. I am using a lot of Movicol and some Senokot. Seems I can only eat small amounts or suffer. Today is a bad day and I am feeling like going back on the liquid diet. Replacing a meal with Ensure..... Having a banana smoothie....

That is another issue. I seem to be low in potassium. Cramps! Cramps in my feet and legs. I know my magnesium, salt, water and calcium is ok. So I had to start eating Bananas, avacadoes, and any potassium rich foods.

I'm all prednisoned out right now. Sleep deprived. Exhausted. Moonface. Gained weight. Feel even bigger with this bloated uncomfortable stomach. I had some raw carrot one day and that really made me feel uncomfortable. So I am automatically avoiding raw veggies. But....with constipation...I need the fibre. I tried fibre powder, but it seemed to make things worse. I'm so foggy headed I can't figure it all out right now. lol.

When I wean off the pred at the end of January, I plan to do Dr Gundry's Lectin free diet, start walking every day, lose this weight and get my life back, lol. I would highly recommend you read his book. 'The Plant Paradox'. You can also find videos of him being interviewed on youtube.

I notice your post is November 2017. How are you going nowadays?

I know you said you are a vegetarian....I am not sure if you eat wheat products?
If you do...possibly that could be the cause.
My daughter always struggled with horrific bloating and pain.
Her DR. did some allergy testing with a blood test.
Tested her for wheat, dairy,eggs, peanuts etc,etc.
The results showed she had an allergy to wheat. The numbers were not extremely high but nevertheless
they were outside the normal range.
She cut out all wheat products.
It has been a couple of weeks now and she said to me it is AMAZING!!!!!...No bloat.

At first she was concerned about cutting out all wheat products......It was a basic staple in her diet
but she has adapted and no longer even misses or craves it.
My daughter has not ever been diagnosed with Crohns or colitis though it is in our family. I myself have Crohns.

Hope this info is able to help.