Medication versus diet

[sandylate]

medication versus diet

Hi, to all the brave crohnies out there. This is my first post. My son was diagnosed with CD in 2003. Severely ill untill resection in 2004. Was subscribed Imuran. Decided to go the diet way due to his hipersensitivity to most drugs. Allmost everything caused side effects.
We followed a combination of the SCD Jordan Rubin and Jinnie Patell's diets. He started eating normally about 2 years ago. Had been having flare ups since June 2011.

It seems asif a lot of crohnies are on a lot of drugs, but not feeling better at all. I am not pro diet. I just want to find something that really works well with few side effects (dont we all)

I wondered if anyone here find that a diet works better than meds. I suppose those above mentioned diet guys would not let us know if they also experience flare ups.

My best wishes to you all
Sandra

 

[beth]

It's a balancing act isn't it. Diet can help, but isn't the whole answer. Drugs can help, but aren't always the magic we hope for. An individual combination that works for each of us is the goal but tricky to find too.

Welcome to CF.

 

[sandylate]

Hi Beth

Thanks for the welcome and answer. I think you are right. My son's GI is not helping very much. He is Imuran pro and gets angry if one does not follow or question his treatment. Rikus experienced intense fatigue using it. Went totally manic on Prednisone and Entocort did not help. He is currently on Asacol. Can't say that it is relieving his symptoms. I suppose we will just have to try and try untill we hit the jackpot. Good luck to you too

 

[Gwen pippy]

Hi Sandra and welcome

I'm sorry to hear that your son isn't well, finding that combo to help can be difficult, a lot of factors can be in play, I was dx with crohns at 11 and spent many years trying to settle things down, in the beginning I remember walking away from the gp's office with a brown paper bag full to the brim with meds on the instruction that I try A for a few weeks then if that didn't work try B and so on but holding off on scoping me to find out what I really had. It's very important to get a GP/GI that understands your son and is willing to listen and help, not just put Imuran on the plate and nothing else. there are so many treatments available. He should be given the opportunity to even try them.
I find even 24yrs later that keeping a daily diary while in a flare and logging food, fluids, rating stress levels, length and quality of sleep and documenting bathroom trips all help to pin point triggers. I have been in remission a few times with the assistant of meds and for decent lengths of time, I do flare though but even the knowledge that I got it into remission before is helpful in fighting back.

I wish you and your son the very best. I have said in past posts that having a parent that fights your corner is one of the best meds, my mum in my rock and I'm 35 now!!!

Good luck and keep us posted
Gwen xxx

 

[sandylate]

Hi Gwen pippy

Thanks for your reply. Looks asif you went through quite an ordeal yourself. I am glad that your mother is supportive. I have read stories of Crohnies who's family just think they are pretending their illness.

I don't know if Rikus is still in denial after 8 years of living with Crohns. He is not very involved in his illness. I do all the reading, researching and suggesting idees. He is just trying to cope with his studies. I have suggested that he find another GI. He is very unsure of which meds to use and ask me what I think. He also does not want to go for colonoscopy or barium xrays again due to bad experiences with both tests.

Thanks for the good wishes and all the best to you too.
Sandra

 

[muppet]

I had great luck for almost ten years with only a low residue, no dairy, low spice diet. But when my Crohn's came back, it came back hard. I have to admit that in the end my compliance was not good and that's probably to blame, but I think I was lucky. I was drug free from 1994 until 2000. Now I'm on two Lialda every morning which seems to work well as long as I moderate what I eat (not as strictly as before). My daughter Sarah is having less luck and we're about to try a modified ketogenic diet (Breaking the Vicious Cycle.) Good luck! Some people, at least, can be very successful with diet so long as they don't cheat.

 

[rygon]

It think Muppet has said the most important thing. Its fine as long as you dont cheat. Ive looked into it and I find it to be a restrictive diet which I doubt I would be able to follow (I dont know how old your son is, but if he goes out do you really expect him to follow the diet especially if his mates are all eating things he cant).

I do find diet an important part still, but the drugs I take definately help a lot

 

[KWalker]

I did the drug route, went through a lot of pain, missed work,tons of hospital visits, etc, and didn't really see an improvement. I'm currently drug free, and am going the diet route. I don't have a set diet I follow, but I've just started eating healthy in general, less junkfood, more baked foods and vegetables, and I seem to be doing pretty well for the most part.

 

[muppet]

How long have you been drug free?

 

[KWalker]

I was down to only Methotrexate injections at the end, and I stopped doing those early Spring 2010, so a little over a year now. I always have needles, and some medication in case of emergency, but knock on wood, I haven't had to use it yet.

 

[muppet]

I hope you'll continue to find success, but for the sake of warning the uninitiated, a year is still too soon to declare your dietary measures are working.

Not to be a Debbie Downer or a wet blanket or anything.

 

[KWalker]

Oh, I agree for sure, however during my worst times, I couldn't wait for the week to be up so I could get another injection in me so I could feel better. I was on such a high dose of Methotrexate that I could only do it once a week without risking an overdose the doctor said.

 

[sandylate]

Hi muppet, rygon and KWalker
I agree with all of you. One thing I have learned the past 8 years is that every Crohny reacts differently to available treatment and diets. It is really very hard to stick to the diets. I would never be able to do it. My son (27 y) sticked to it very well for 5 years and then started eating healthy but including gluten diary and sugar. He was drug free for 7 years. At least that is something to be thankful for. Good luck with ketognic diet muppet.

 

[25times]

They say there is no connection between crohns and diet, as crohns is said to be an autoimmune disease. So a flare is apparently caused by an autoimmune reaction within your body, and not by the food you eat. But I can tell you with 100% certainty that diet does affect my crohns. I don't think I've ever eaten anything that has sent me into a flare, but since I was only diagnosed in April, I didn't pay much attention to what I was eating/how I was feeling in the past. I haven't been able to achieve remission yet, although I've been on different medications since May. None of them have worked very well so far, except a high dose of prednisone. And even then, I wasn't in remission. I just had less pain and diarrhea. The hyperactivity from the prednisone made me feel better as well, just from being in a good, jaunty mood.
I'm not pro-diet or anything, as I really don't see how diet alone can "cure" crohns. It will definitely help maintain remission, but I think you need medication to help get you there. Unfortunately, it's a huge guessing game. trial and error. I've been on entocort, prednisone, imuran, and now remicade. I can't say I'm feeling much better, and I know if I didn't have my painkillers and anti-nausea meds, I wouldn't be sitting here typing this. But I've learned how to manage, for the most part. I'm sure if I ate a better diet, I would see an improvement in my symptoms. But being on disability, too weak to stand in the kitchen and cook, and unsure of all the foods I'm able to eat, makes it pretty hard to find a "good" diet. It's something that I really need to work on. But for now I'll stick to my instant noodles, rice and chicken. They don't hurt my stomach and are super easy to make.

 

[muppet]

Diet may not be a root cause of the disease, but it certainly does have an effect on your already inflamed colon. Most decent GIs have long abandoned the "eat whatever you want" mantra.

 

[Jennifer]

Diet may not be a root cause of the disease, but it certainly does have an effect on your already inflamed colon. Most decent GIs have long abandoned the "eat whatever you want" mantra.

When in a flare yes but remission is a different story.

 

[David]

Hi Sandra and welcome!

Do you know specifically what part of the intestines your son had resected? And what are his current symptoms?

 

[sandylate]

Hi David
Thanks for the welcome. Yes, last part of his ileum and first part of colon. About 30cm (I think that is about a foot). Mostly pain, diarrhoea, sometimes constipation and low fever and loss of appetite.

 

[David]

Hi Sandra,

Just in case you're not aware, the last part of the Ileum is the "Terminal Ileum". Is your son on any sort of supplementation? Vitamin B12? Iron? Folate?

 

[sandylate]

Hi David
Thanks I was trying to remember what you call the last part. English is my second language. His last bloodtest was a month ago. B12 is fine. Is a bit anemic. CRP normal.

 

[sandylate]

And he takes omega 3 and probiotics.

 

[Jennifer]

A bit anemic? Perhaps some extra iron and folic acid would help some.