New to crohns in hospital need quick help

[TjEisenman]

Hello! first time poster just joined this community after reading some similar people in similar circumstances and i must say ive been blown away by the support and help here that it moved me to share and tell my story and ask for help on a decision i have to make very soon.

Im 31 years old and have been in hospital for 2 weeks because of an abscess in my illium (spelling) and inflammation in my colon lower intestine. They are calling it crohns and i have agreed to the draining and treatment of the abscess but i am not agreeing to the medication they want to start me on. They want me to go full on humira or azathioprine and I told them i want to go SCD diet or something similar. I told them I may be open to some other treatment if it is short term and not as toxic and hurtful to my body as the Hardcore options they are giving me. This has seemed to make them very angry and they are not suggesting anything besides Humira. What can I do. Can anyone suggest something smaller to get started on or can i Just go 100% SCD and heathly life style first and if that doesnt work out then I figure they can drug me up as much as they want.

Feeling really scared and am getting nothing but cold shoulder or anger whenever I bring up SCD or anything diet/non drug related talk.

Thank you all so much my abscess drainage is tomorrow and ill need to make a treatment option very soon so any help would be great. Im really not comfortable taking hardcore drugs before i try other less impactful treatments if possible.

Thank you and Im very excited to be part of this community im treating this as a positive thing

 

[Axelfl3333]

I would listen to your doctors hit it hard quickly get tapered off to maintenance meds quickly then you can alter your diet,exercise regime to keep it that way.if it's bad enough for you to be in hospital you need to run with what the doctors are saying and just remember side effects from medication are rare and you,ll be like the rest of us gettin
g regular blood tests to pick up problems early.when I was getting a lot of scans,scopes,treatment I asked them to fit a tap it would have been easier.good luck hope your better soon

 

[plantluvr]

hey. sorry you're in the hospital. i hope you feel better soon. drs dont like to talk about diets or anything natural. they get angry wiith me too. ive had to be on alot of meds as most people but now im severely allergic. i use medical marijuana it is a life saver. and really takes away my pain,helps sleep,eat, anxiety, nausea. and there is no proven harmful side effects. its a wonderful thing. my opinion. its really up to you what you want. little secret the drs want money so they push hard for you to get meds that are harmful. this is just my opinion. i wish you well and good luck!

 

[bettyboop12]

Sorry your suffering at the moment. Some tough decisions to make in a short space of time.

I remember when I was in a flare beginning June 12, my symptoms then got worse and it took months of tests as out patient app and finally in Nov 12 I was given aza. By that point I was hardly in work cause I was suffering. Diet would not have helped because I was at a stage where nothing but medication would help me... I was hardly eating anyway cause everything was running right through me.

Can't say what the best thing to do is, I guess your gut feeling would tell you what is.

Sending you lots of support and get well wishes.

 

[TjEisenman]

Thanks for some quick responses Im more wondering if I can choose something less Hardcore and hurtful to my body First and then if that doesnt work trying the more intense medication like humira and AZA and remicade. Had anyone ever tried the SCD diet with something mellow like budesionide, or anything mellower that the biologics? Im not sure i Have a super Bad case of crohns Im sure there is inflamation but I can eat pretty good and have normalish bowl movments and not alot of pain no fissures no pollups no leakage just a small 2 cm abscess that will be drained tomorrow.

 

[bettyboop12]

I understand your concerns and the need to try other options first. I was on budesonide and it worked when I was on it. Not tried scd diet, hopefully someone else will offer you their experience with it.

 

[jlm]

I'm not entirely sure if just a diet would get rid of the inflammation you are experiencing. Just like Axel mentioned you may need to hit it hard, get into remission, and then use diet and healthy living as a way to keep you in remission. The sad thing is that Crohn's disease is ver specific to the person. Diet doesn't really work for me. The only thing that has kept me in remission is medication and surgery. In Canada Humira and remicade are definitely not the first drugs they try to get you in remission so if your doctors are going right for Humira you must have some severe disease. It took almost 6 months for an abscess that I had to close using a combination of Humira, Cipro and flagyl. I personally won't use aza or prednisone anymore.

 

[Patricia56]

So you are thinking of going without treatment because you are scared of the meds? You are in the hospital with an abscess - that could have become life threatening. You are not going to fix this by going on a special diet.

Why are you saying that Humira and AZA are hurtfull to your body? Your immune system is running overtime and these meds are intended to slow it down as it were.

Prednisone - now there's a drug that messes with your body. But Humira and AZA are very selective in the changes they cause in your immune system. You will not be any more vulnerable to colds than you were before. If you get a serious infection then you might need to stop the meds for a little while but overall Humira and AZA are safer than prednisone.

And those changes go away when you stop the meds. No long term damage has been found from the use of biologics or AZA. Some people have been using AZA for 20 years with no problems.

It's hard to go from thinking you're healthy to being told you are actually really sick but you need to get your head around that NOW. Your life is at stake and you cannot afford to bury your head in the sand.

Get into remission on whatever medications your doctors recommend and then you can try the SCD and other alternatives. But I will tell you almost no one is able to get and keep their CD under control with dietary measures. They need meds. For life.

I am sure that every CDer would love to get off their meds but the smart and experienced ones know that this is just part of life - unpleasant but necessary - and they do it.

 

[TjEisenman]

Hi guys thanks for you imput. It seems like so far everyone here agrees on the heavy drugs (aza or humira) I may have to go for them But i had been reading some places that people where having big time sucess with SCD/or SCD type diets and yes im very scared of starting biologic type drugs. I was hoping i could get on budesonide or its equivalent as i heard it was sort of a mellow steroid but the docs dont want to do it.... ugggg feeling helpless going in for my abscess drainage in a few hours will update tonight.

 

[scottsma]

I have to agree with everyone.Get this sorted NOW,with the meds your docs are advocating.You must give them a chance.If they do not agree with you,then your Docs will try an alternative.Then when you are in remission,you can try Scd.But diet has very little affect for a lot of people.If only it was that easy !!! I hope things get better for you soon.

 

[Essieluv]

Doctors usually know what they are doing with these kind of issues. Are you on any antibiotics at the moment? I know that for abscesses, Cipro and Flagyl can be really helpful. It never hurts to talk to your doctors about other options, but in the end you need to do what is best for your body. Some flares simply cannot be managed with diet and alternative therapies. My advice is to look at your options first, but if there really aren't any, just go with the meds. You need to nip this flare in the bud; then once you are feeling better, you could try and control your health with diet. Good luck with whatever you choose, and I sincerely hope you start to feel better.

 

[Patricia56]

As scottsma said - if diet were the answer every CDer on the planet would be doing it.

The only other dietary alternative that does work for many children is to go on exclusive enteral nutrition - you use a liquid formula for all your nutrition and don't eat anything. This generally doesn't work for adults for some reason but can be tried.

It might be easier if y ou stopped referring to the meds as "heavy". they are life saving and before them people with CD had nothing but prednisone. Their life span was about 57 years old and 80% had at least one abdominal surgery.

Entocort is a form of steroid like prednisone. But it only works in one part of your intestines. If your disease is more wide spread then it is not enough - it will only treat the part that it contacts in the small intestine and nowhere else.

Best wishes. It's a shock and a lot to learn. Try to trust your doctors to do what's best for you - they have a lot of training and experience behind them. We can't turn ourselves into GI's but we don't have to - they're right there and have already gone through the 12 to 16 years of training/school it takes.

That doesn't mean you shouldn't ask questions and ask for all the options. Just that when things are rough you should probably follow their advice.

Hope you are better soon.

 

[scottsma]

Yes,what Patricia says,wholeheartedly.

 

[JaneInTheRain]

Hey there! Fellow Washingtonian and fairly recently diagnosed as well. I have to say that I am the opposite of what most people are advocating here. That is not to say that drugs aren't what you need, but in my experience I found that western medicine doesn't have all the answers and they have a limited bag of tricks. I was lucky and amidst the chaos my original dr. started with a bottom up approach. I have taken everything up to Aza and was on Imuran for 7 months, told by a number of people to start Remicade and ended up seeking additional opinions. I diversified my medical team, employed a number of approaches (diet, meds, supplements, acupuncture, meditation) and after a full round of new diagnostics ended up being recommended for surgery because - meds weren't going to help the damage I had suffered.
Again, this is not to say alternative methods, or drugs, work or don't work. What I am saying is that I know this can be an extremely intense time and starting something like Humira is a big decision. You aren't out of place to want to listen to your body or to weigh all your options. Maybe Humira is right, I helps A LOT of people! But, you aren't crazy to desire an informed decision.
I consider myself extremely lucky - I haven't been on meds since Dec. 2012. I still receive acupuncture, I take Vit. D, Vit. E & Tumeric. I have a very simple, whole foods diet, based on a number of restrictions that I have learned over time. I arrived at all this because I figured if I have a disease that is unique to the individual, I should experiment and find the best option for myself. I don't know how long med-free will last, but it is worth the time that I get. Plus I am practicing the healthiest lifestyle I ever have!
I don't know if that is helpful, but you have all our support. Listen to what your body needs, it will tell you.

 

[Axelfl3333]

Tj I hope these replies help especially Patricia,s really reasoned sensible and obviously the result of hard earned experience all these expensive meds will get you home feeling better,you won,t be on the big guns forever.when things get better you can work on the alternatives I personally find exercise and avoiding my triggers has made so much difference don,t know why just does.
Hope your better soon

 

[Gra]

Im 31 years old and have been in hospital for 2 weeks because of an abscess in my illium (spelling) and inflammation in my colon lower intestine. They are calling it crohns and i have agreed to the draining and treatment of the abscess but i am not agreeing to the medication they want to start me on. They want me to go full on humira or azathioprine and I told them i want to go SCD diet or something similar. I told them I may be open to some other treatment if it is short term and not as toxic and hurtful to my body as the Hardcore options they are giving me. This has seemed to make them very angry and they are not suggesting anything besides Humira.

Hi, I was very anti-Humira at first, but eventually agreed to try it, after being on Prednisone and Azathioprine, neither of which worked for me. The Humira took 6 weeks or more to start working, and eventually (after about 4 months) it stopped the inflamation in my bowel altogether. Yes it can have nasty side effects, but it helps far more people than it hurts, as far as I can tell.
Just ask your doctors to give you time to consider it, and read as much as you can about it. There is a sub-forum on here called the Humira Cub, look it up and join it, and ask as many questions as you need.
Many regards,
Gra

 

[Patricia56]

TJ -

How are you doing?

 

[DustyKat]

The issue here is you have already developed a complication, the abscess, which puts you into the category of severe Crohn's. Agreeing to antibiotics is wise but unless you treat the underlying cause then it will all be nought.

There is absolutely nothing wrong with going down the SCD path but tackling your severe CD from that standpoint alone will be fraught with danger. You need to stabilise yourself first, get the inflammation under control and then further down track when you attain remission reassess where you are at. Unless you do what is needed now you will have no say in where this disease takes you.

Thinking of you and hoping that things have improved for you. :ghug:

Dusty. xxx

 

[TjEisenman]

Sorry for the late replay. 2 weeks since bowel surgery. removed 8 inches of small bowl and appendix current at home resting. The surgeon said it was a good thing I didn't take the humira and try to cure it that way because it wouldn't have worked and I would have been even weaker for the surgery. I hadn't eaten in 30 days and they had to start TPN feeding me. Now im on a normalish SCD diet at home but still have strange bowel problems.

Dusty I know this is very similar to what your experience wth the fistulas and surgery. How was post op? did you decide to use drugs like aza afterwards or is everything better? My goal is to not use drugs so I will see if it is at all possible. Im deff weaker now but I wonder if they cut out all the inflammation or not. Im scared of another flare up but did I buy some time with the surgery or can flareups/fistulas happen at anytime?

Thanks guys Awesome support thanks you all so much this is very hard

 

[DustyKat]

Hey Tj,

Thanks for the update and good to hear that all has gone well with the surgery.

My daughter had more extensive surgery but my son has had about the same amount of bowel removed as you. Was your surgery open or laparoscopic?

Neither of my children had post op complications, they both had open surgeries, and for my son the beginning of the 4th week post op was the real turn around for him as it was then he was able to move freely and without pain.

I am one that does subscribe to maintenance medication but I do appreciate that it is an individual thing. If your Crohn's was only located in the ileum and at the surgery site then surgery should put you straight into remission and the challenge is then to stay for as long as possible. As you would know that since Crohn's is an autoimmune disease and it is therefore characterised by flares and remissions, so yes, flares can happen at anytime. having said that my children have had very good outcomes from surgery with them remaining in remission for 7 years and 2.5 years respectively.

They both take Imuran as a maintenance med and I look at no differently to anyone that has a chronic condition and takes medication to control it. Asthma is a good example...you have relieving and preventative puffers, so you take your preventative puffer everyday in the hope that you keep an acute attack at bay and limit your use of Ventolin, which is a steroid. It is the same for Crohn's, you take your preventative medication everyday to limit the chances of having an acute attack (flare) and so limit your use of steroids and complications. I don't like one bit that my children take these meds everyday but in reality it is no different to them being asthmatic or diabetic and I would hardly not medicate them under those circumstances.

Since you have had an ileal resection please monitorthe following, via blood tests, on a regular basis regardless of normal results and supplement as needed:

Iron Stores
B12
Vit D
Magnesium
Zinc

My daughter lives away from home so I am not familiar with her supplement regimen at present but my son has B12 injections and is supplemented with oral Vit D, Magnesium and Zinc as he was deficient in all of them. Deficiencies can lead to various symptoms and supplementing will help alleviate these if present, they also have the potential to play a preventative role.

Both of my children suffer with bile salt malabsorption diarrhoea. This is not uncommon following an ileocaecal resection. Some people don't suffer with it all, others do initially and over time it takes up by itself and then for the rest it becomes a constant. My kids have had some natural take up but not enough to eliminate the problem, they do however use psyllium husks with great effect. If you do have diarrhoea there is medication that can be prescribed that work in the same way as psyllium does, they absorb excess bile salt in the ileum effectively catching it up. If you have too much free bile salt in the large bowel it causes the osmotic effect of pulling water back out of the body and into the bowel and that causes diarrhoea.

Good luck for a continued uneventful and speedy recovery!

Dusty. xxx