I'm new...here is where I'm at with crohns:(

[Irene3]

Hello everyone. I found this site the other night, on a steroid freak out, and it bought some much needed relief. I don't normally go on about most my symptoms to people, if anything I withdraw through the rough times, because I don't want to be putting a fake smile on through pain, except for my little girl Jas, who brings a smile to my face even through bowel perforation.

So I was diagnosed 6-7 years ago.. After MANY doctors thinking I'm over reacting, I gave up trying to find the answer to my symptoms. Ended up with numerous obstructions where id go into shock, throw up, unimaginable pain, until one night staying at mums place, she took me to emergency, and finally I found out it was obstructions I was having. Then GI, colonoscopy, confirmed what I think all us cronies find a shock at first. By this stage I was told I had to have surgery, as my bowels were badly stricktured, but I opted out of it, after my first lot of steroids seemed to make things a lot better. Numerous hospital stays later, and finally giving in to needing to do something about the incredible pain, I had emergency surgery, with a 70cm resection , and temporary illeostpmy. Long story short, my symptoms have never really subsided. Diarrhea has become a part of normal life, and the pain has peaks then subsides.

So here I am, 4am in Australia, reading all your stories. Iv had a really tough time on prednisone the past few months, and posted a 'help Pred is scaring me bad' thread in general disscussion the other day. Helps to know I'm not alone. I wish I found this site through one of those painful hosp stays. But regardless, even as I sit with the usual symptom of never really being able not to think of your gut, it's great to read all your stories, and even psychotic episodes on the meds they prescribe for us, because otherwise I think depression would have got worse for me. I think knowing there are so many of you, that just except that this is just one of those 'crohns' days with it's usual runs to the toilet, helps me at the moment. Can't wait to be off Pred and trying a diet path again, as Infliximab and Imuran did nothing for me.
So that's my story, hope to speak to you all, and thank you for sharing all of yours ...

 

[Angrybird]

Hi Irene and welcome to the forum :bigwave: Have you ever thought of enteral nutrition? It has done a good job for many here and it seems to do a really good job at helping the bowel calm down, have a look at the diet and sups forum for further info on this.

Also when are you next seeing your doc about things? What have they said about the continued diahrroea despite being on the meds?

I do hope you can get off the pred soon and that a working treatment can be sorted hun.

xxx

 

[Irene3]

Hello, and thank you. I see my regular doc weekly but my next GI appoint, isn't until the end of the month.

I only just jotted enteral nutrition down this morning, to check out, as well as specific carb diet etc, just from reading threads on here. I also want to ask the GI about Pentasa and asacol, as his never mentioned these. But regardless I'm noticing a lot of crohns sufferes on here are saying celiac and dairy, so once Iv weaned the pred a to 20 or so, I'd like to begin dieting. I tried once and went through a horrid time with sugar withdrawal etc, and landed back in hosp on corti steroids, then Pred, so I'd like to try and sensibly research this great array of nutrition info I'm reading here, and bit by bit start elimination. I read that keeping symptoms journal is great, and because the Pred has messed my bod around so much, I thought start that straight away, with all food, sympt, pain, med and bm info.

Thanks so much for the welcome and suggestion. Iv read a few great replies of yours to threads already on here the last couple of days. Look forward to chatting to you. I'm so grateful to have found this forum

 

[David]

Hi there and welcome! In addition to the enteral nutrition mentioned above, you may want to look into the Specific Carbohydrate Diet. It encompasses gluten free, dairy free (except a few specifics) and much more. A lot of people have had success with it, including me so far (I'm currently on it).

I assume they removed part of your terminal ileum. Have you had your vitamin B12, vitamin B9 (folate) and vitamin D levels checked? People with CD are commonly deficient in those and if you've had a terminal ileum resection, you're much more so. Proper supplementation can make a huge difference if you are indeed deficient.

 

[Irene3]

Hello David, yes, vit D is low, and everytime Iv been in hosp I need Iv potassium, so I need to watch those. B12 I can only absorb by having injections every 3 months, as 50cm of small and 20 of large bowel was rescected. So yep, the illenium.

Thanks for the diet idea. I jotted that one down too but Havnt looked into it yet. First Id like to try to slowly get the grains and heavy carbs and stuff replaced with better more nutritious options, then as I go down in steroid amount, do the milk and dairy. I have sustagen all day at the moment, my sugar - milk cravings are constant thanks to the candida, so that will be by far the hardest. Esspecially with my back and teeth, last two lots of Pred were bad on them, and this last lot is horrible. Iv never had Sooooo many side effects. I'm looking at every angle from candida to blood sugar, so this time I can sensibly cut the milk down and castrate up, and hopefully that way I won't have another huge rise in inflammation when the Pred is finally weaned. I'm so glad to see so many other med- long term on here. My GI is going to have a huge list to go through with me at the end of the month, not only with symptoms and meds, but things Iv read through threads here the last few days, that freak me out a bit.

So thanks again, that's deffinatley one of the diets I'd look at before Iv nutrition. And it's great there's a diet and supplement section here too, so I can put down everything I consume, and see how my body takes to it all I guess.

 

[valerie comstock]

Reading on all the b12 shoots i have them once a month plus take b12 2500 that disolves in mouth everyday.

 

[Irene3]

I noticed on a few threads on here that a lot of b12 is needed. It helps the bowel heal, or is needed isn't it? I'm having b12 and stuff tested at the same time as the blood sugar, so hopefully my doc will put the amount up if need be. There is just more and more I want to see the GI about. But thanks Valerie, it's another thing I should ask him. By the end of the month I'll have such a big list of questions.