New and seeking for experiences

[SENs]

Hello everyone,
First of all let me say that English isn't my main language, so please excuse any mistake I might make

I'm female with 36y and recently diagnosed with chrons.
The last 2 years i've had many episodes of diahrea and the last year I was going to the hospital emergency every 2 or 3 months with abdominal pain and vomits that could only stop with intravenous medication. Short story they gave me medication and sent me home.
Back in August 23 I got admitted to the emergency room and after lots of testing I stayed for 8 days there, did colonoscopy with biopsy and oficial diagnosed with chron with strictures
I did prednisone for 2 months ( put 10kg extra) and after that I started imraldi (adalibumabe) alone.
In January I did more tests, and apparently my levels weren't good so my Dr prescribed azathioprine+imraldi
Doing some researches I got bit scared of the side effects to be honest, but I'm trusting the process..
I'm still trying to figure out what is normal to happen.. I've had what i belive its some extra intestinal symptoms related to the disease/caused by the medication
- hair loss, joints and muscular pain and most recently some kind of dermatitis
I'm still struggling about food/ diet.. even though I'm being followed by a nutritionist specialized in this condition, I have days eating clean, that I experience some issues and some others I feel normal..
Sometimes i feel frustrated and " alone " with all this happening, so hope your forum can bring me some clarification and hopefully some help in this new journey

Thank you

 

[LiteBlueSkies]

I think my case is milder than yours. I was diagnosed a few weeks ago after a long period of diarrhea.
I tried eating what is considered a healthy diet and it tore me up.
I ate lots of green leafy vegtables and everything considered ‘healthy’ - lots of fiber . The fiber killed me.
Just made it worse.

I hesitate to give you .or anyone else advice …except where you are now can't get much worse. In my particular case
I went and bought a weeks supply of “Ensure” protein drink [140 cals/1 g sugar / 30 g protein] and started exclusively drinking that and had maybe a bananna or a sweet potato after a couple days ….added to the Ensure [they call these drinks EN for enteric nutrition] . It's basically a liquid diet. There are more specialized commercial versions but they were way expensive . I buy ensure for about 12-14 bucks for 4 bottle in the U.S.

My stools went from lots of diarrhea to normal within a few days. i think the dermatitis is a known effect of
Crohn’s . You might consider giving the liquid ensure diet a try for 3 or 4 days and see . I wouldn't think drinking ensure could be harmful.

 

[Carabop1]

The side effects I had with azathioprine were hair loss, a bad rash on my face and a bloody nose at least once a day so the doctor took me off the and I am now on Skyrizi. Skyrizi helps some but I still have diarrhea and mucus if I eat conventional foods. When I eat organic foods my stools are still soft but the diarrhea and mucus go away. If I could I would eat organic 100% of the time then maybe the crohn’s would go in remission. It takes about 3 days eating organic foods for things to get better after I have eaten conventional foods. When I eat organic I don’t restrict any foods.

 

[LiteBlueSkies]

The side effects I had with azathioprine were hair loss, a bad rash on my face and a bloody nose at least once a day so the doctor took me off the and I am now on Skyrizi. Skyrizi helps some but I still have diarrhea and mucus if I eat conventional foods. When I eat organic foods my stools are still soft but the diarrhea and mucus go away. If I could I would eat organic 100% of the time then maybe the crohn’s would go in remission. It takes about 3 days eating organic foods for things to get better after I have eaten conventional foods. When I eat organic I don’t restrict any foods.

Reminescent of a recent post by poster Kiny about cytotoxins in food possibly causing problems. Maybe cytotoxins are less in organic foods.

 

[Carabop1]

Very possible. Do you have a link to the post about it? I would like to read it.

 

[LiteBlueSkies]

Very possible. Do you have a link to the post about it? I would like to read it.

Mycotoxins are of interest. Unraveling crohn's disease requires explaining V. Kruiningen his observations. Cases of Crohn's disease tend to cluster within specific geographic locations and even within households.

The sheer prevalence of crohn's disease requires an environmental explanation that supports why it is widespread and results in clusters of cases.

Mycotoxins are widespread in the food chain. Because mycotoxins can develop pre-harvest and depend on local farming practices, they would result in large geographic well defined clusters of people being exposed to them. As mycotoxins can also develop post-harvest during storage, exposure could also create familial clusters. Although the most prevalent exposure of crops to mycotoxins happens pre-harvest, on the field, and is generally visible on crops after inspection. Still, the majority of crops are sold containing mycotoxins.

The study of mycotoxins’ toxicological mechanisms are rather new, and didn't get much attention until recently. The EU has now lowered its max exposure limit twice as a result of studies.

Symptoms of mycotoxin exposure are similar to those seen in crohn's disease. So far, commonly seen aphthous ulcers in crohn's disease are unexplained. Interestingly, high mycotoxin exposure in animals often causes oral lesions.

The mycotoxin deoxynivalenol, commonly known as vomitoxin, induces acute vomiting, fever and diarrhea. Vomitoxin is widespread in the human food chain. Deoxynivalenol is concetrated in ileal and colonic tissue after animal infection.

Mycotoxin are stable and can easily survive regular food processing. EN however, would limit mycotoxin exposure. The lack of whole grains, and all the steps required to derive protein from cheese (whey) and skimmed milk (casein) instead of directly consuming animal protein, would severely limit possible mycotoxin contamination, the aggressive processing involved in making EN and its dry storage, would further limit any mycotocin presence.

 

[SENs]

Hello everyone,
Thank you for all your replies

I wonder how we know if we are getting into the remission path
I'm feeling more positive this days

Let me add a few notes about my nutritional plan
Gastro Dr basically told me to eat whatever and just cut out foods if I feel symptoms..
In the first month or so I did that.. determined that beans and spicy food were like certain triggers but at some point I started to think I needed something else..
After get a professional support
I can say I feel better, she basically gave me a plan including food allowed and the ones we should avoid (as IBD patients)

She also gave me a few supplements, vitamin B12, vitamin C & D and also some omega 3 pills

Soup must be included in every main course but only with the allowed veggies, I have 2 versions ( happy to share her tips if any of you want) . The 2 versions vary, 1 for when I have soft and a different one for when I struggle on doing it...
That happens to you ? I'm getting "obsessed" about it, and always get a bit worried if I skip it any day lol .. sorry if I'm being explicit

 

[SENs]

Ah.. and i have some " weird " new thing going on.. I keep having some " wounds" inside my nose for like a month and I can't heal them.. also I have my ears pierced for years.. more thn 20 years, and out of nowhere it started to look like if it's was infected.. bit of liquid comes out if I squeeze..
I've been using some cream to help it to heal.. but not very successful..
U guys think it can be related to the low immunity caused from azathioprine?
I don't know when I have new appointment with gastro Dr..

 

[my little penguin]

Call a dermatologist
They can help with weird skin wounds or ulcers that don’t heel
Good luck

 

[Carabop1]

Azathioprine gave me a bloody nose at least once a day and a skin rash on my face.