Newbie! feeling lost, advice needed :(

[ash_c]

newbie! feeling lost, advice needed

Hello all,

I'm new here to the forum and would really appreciate some advice. I have had crohn's since 2007 (diagnosed at 18) and had one major flare then, hospital and then treated with prednisolone which I hated but it did the job! Since then I have lived a normal lfe basically. I dont experience much pain and do not suffer from diarrhoea at all. Any little flares I have treated with some cipro and ensures untill the symptoms pass. I take pentasa and have a small section of crohn's in my terminal ileum only.

However last month i had a major flare that came on suddenly. I was in hospital for a few days, i thought just to re hydrate but after blood tests it turned out my inflammatory markers were 198, when usually during a flare they had been about 40. had a CT scan as my doc thought I had an abcess was clear. So i was given IV hydrocortisone, antibiotics and put on Entocort (budesonide.) I have been on entocort, cipro and pentasa since I have been back home for 3 weeks and feel completely normal. No symptoms at all, never felt better! I have even gone back to university to finish my final year. However now my doc wants me to start azathioprine next week. I have read its very effective, however I am terrified to be honest and dont want to take it at all. The side effects just seem too much and I know they are rare but I am not sure the benefit outweighs the risk here; i think I only have mild crohn's disease.

I am only 21 and want to manage it as naturally as possible and I feel so lost, I feel as though I havent tried hard enough to beat this myself. I want to try SCD diet and change my whole lifestyle but my doc says I am endangering myself and may end up with fistualting disease and further flares without immunosupressants. I just dont know whats best and I feel like I have no other option and will just annoy my doctor if I dont get on with it. Ive even wondered whether surgery could be a better option for me as I only have 10cm of crohn's. I always thought i could live with this and control it myself and I would be fine and now I dont feel as though I have any choices left. Any advice you have would be wonderful, I dont know anyone else with crohn's so Im hoping this is a good place to gain some. Sorry for such a large post and thanks for reading. xoxo

 

[DustyKat]

Hi ash and :welcome:

It's great to hear that you are feeling so well! You will find loads of info and support here. Browse through the food and diet section and you will find info about the different diets and what people find useful. The main thing to remember is what suits one person may not suit the next, everyone is different, and this applies to most things with this disease medications including medications and symptoms.

I guess your doctor doesn't think your current drugs are going to be sufficient to keep you in remission. I understand your feelings about surgery but having that doesn't mean your doc won't want you on a maintenance drug post op. My daughter has had a resection and is on a maintenance dose of Imuran. I too struggled with the choice that was put in front of me but I had one advantage..........that being, my daughter's surgery was an emergency and she hadn't been diagnosed so I saw first hand the absolute havoc untreated Crohns can wreak. Of that is worst case scenario and I can see where the doctor is coming from in not wanting you to reach anything approaching that point. In our case Imuran has been the drug that, in conjunction with surgery, has maintained my daughter's remission for 4 years. Ultimately the choice is yours and I can see why you don't want to go onto the stronger drugs when the others appear to be working. It is difficult when you don't see eye to eye with your doctor so can you at least get a second or even third opinion and that way you will have a better idea of what you are dealing with. If they are all of the same opinion then perhaps you need to re-evaluate where you stand on things but if they have different opinions then you may be able to go down the path you wish with greater confidence. As you said, it's all about weighing up the options but either way I think you are doing the right thing with looking into your diet and making lifestyle changes no matter what medication you choose.

Good luck with the decisions you need to make and any questions just continue to ask away and we will do our best to to help. Welcome aboard!

Take care,
Dusty

 

[woops!]

Welcome to this site. You will find that most of the ppl here are great to vent to, and also great with offering good advice. Does your Dr listen to you? I mean realy listen? Would it be possible to get another opinion? I am currently on the SCD diet, although i do modify it a little. I have had CD for 15 + years and this is the best I have felt. Remeber that what works for one may not work for the other. I think you should try the diet, start out slow and then build up to the fruit and veggies that you can eat on this. Once you feel good with that then you can modify it a little. I dont make my own yougart, i eat the yoplit greek in the store, and I dont use almond flour, I just cut out bread completley. Basically at the end of the day you have to do what works for you. I have a friend with CD who eats a bananna every day and swears thats what makes her feel good. If thats what works for her.....she shoud go for it. Look at the food and nutrition threads here. you may get some more ideas. Good luck and lets us know how it goes for you.

 

[ameslouise]

Hi Ash and welcome. You sound scared and frustrated, and believe me, we have all been there at some point in our lives and diseases.

There are a lot of books out there and stories of success with non-medicinal treatments. There are a lot of people that respond well to these alternative treatments. It is worth looking into and trying, as long as you don't put yourself at risk. Be realistic.

I tried the alternative thing (drastic diet change, supplements, vitamins, IV nutritional therapy etc) and it did not work for me. I moved on to Humira and that has not worked for me either. Each of us just needs to find the right way to manage, be it meds or alternative or a combo of both. Just keep your doc in the loop with anything you try and make sure you listen to your body.

Please try not to think of going on meds or having surgery as "giving up." Unfortunately we were all born with a malfunctioning immune system - sometimes we need outside help to make it function properly.

Good luck - Amy

 

[CDDad]

Hi Ash,
I felt the same way as you when I was younger. The docs weren't helping me and I was frustrated. This was before immunosuppressants. I went about 12 years without being under a GI's care and just dealing with the symptoms. Well, by the time I got back under a doc's care a few years ago, it was too late to save my colon. Goodbye anus, rectum, and colon. Permanent ostomy.

Now, this may have happened if I was under care all those years anyway - I'll never know. Just one man's story.

Side note - I'm doing so well with an ostomy after 6 months. Hardly a bother and love not having the diarrhea and urgency.

 

[Jennifer]

Hi and welcome to the forum!

I think its important to remember that Crohn's disease is a chronic illness and is an autoimmune disorder where our own immune system attacks both good and bad bacteria in our intestines and doesn't know when to quit. No matter what you eat, if your Crohn's has become active, its active and no diet can shut that off. That doesn't mean go ahead and eat whatever because some foods can bring on unwanted symptoms but that's different from bringing on a flare. For me if my GI doctor said that a diet wasn't healthy for me, I'd listen to them and no one else. You can always get a second opinion if you aren't comfortable with your current GI specialist.

As far as surgery goes, it doesn't make sense to have it done if it isn't needed. There's no reason to have surgery done if your infected bowel can be treated with medication. As has been said you will still be taking medication after surgery anyway because surgery is not a cure. Crohn's can pop up anywhere from your mouth to your anus so its best to keep as much of your bowel intact as possible.

 

[ash_c]

Thanks for all your replies, it really helps to hear peoples stories and opinions and its calmed me down a lot! I think as I've been reading a lot and researching drugs and diets etc ive come across lots of conflicting information; sometimes people are adamant diet can help yet when I was in hospital people told me it had nothing to do with what you eat; if its going to flare up it will regardless. I think for me its early days, only three flares and I need to try and listen to my body and do what I feels best personally but its so hard not knowing if something is going to help or damage you further. As for my GI I feel he does listen and really care; for example im on Entocort now rather than Prednisolone as I was so miserable when I was on pred; it really damaged my self confidence. I just worry i am being treated the same as a patient with severe disease, constant pain and weight loss etc whereas I dont experience that. On the other hand not taking the medication might lead to it becoming more severe. Its just so confusing!

I think I will most definately try the SCD diet, perhaps next week while im still on entocort which has calmed everything right down. Just going to try and avoid too much fruit and veg for a couple of months. However I dont think I am going to be able to avoid going on Imuran. I dont want to at all but perhaps its best. I worry that at 21 im pumping myself full of strong meds and I worry about fertility etc in the future. I also see side effects such as cancer, bone marrow problems and although its so rare I worry it could happen to me and I would end up worse off! As for the surgery option i read an article in the Daily Mail a few days ago basically saying surgery was the best option and provided a virtual cure, you may have seen it think there is a thread about it. Not sure if I agree or not but it certainly made me consider it. Truth be told though, I dont beleive im ill enough for surgery and to have an operation when Im pretty healthy is silly. And its absolutely right, i'd be on imuran anyway! Think i need to man up and just go ahead with it even though its upsetting.

Thanks for all your help, and I hope everyones doing really well. xoxo

 

[DustyKat]

Hey ash,

Because everyone is so different you will get such differing opinions about diet. Now in my opinion I don't think diet alone will stop a flare from occuring but may very well alleviate the symptoms when it does occur. As to everyday diet when you are not flaring, well I think it's sensible to eat what agrees with you and avoid what doesn't. In Roo's case it has taken 4 years for her to reach acceptance with her body but she was only 14 when diagnosed. In her case she has found a vegan diet suits her best, she feels the most well and energised on this type of regime, keep in mind she is in remission though. Meat and dairy causes cramping and bloating.

As to the medication well, I mean't to say this in my original post, I see it a a preventative. Crohns is a disease that is lurking away waiting for the opportunity to strike and anything you can do to keep it at bay can't be all bad. Good luck and keep us posted!

Dusty.