Last med. available and surgery lurks around the corner

[Fosterfamily2303]

So I have officially tried EVERY medication available. I had developed drug induced lupus to my latest med remicade. I am currently on an Injection M. So far no luck. If this does not I will need to have my colon removed.

Had anyone as delt with same thing? Currently my hair is falling g out handfuls at a time. I have so much pain..my bum hurts from consent bm.

I am so scared of the bag. But I'm so tired of feeling this bad

 

[DJW]

Hi. I really hope you can avoid an ostomy. That being said I got mine (many years ago) because none of the meds available at the time were working. I was so sick and fed up. The ostomy gave me my life back. It was literally a life saver.

 

[my little penguin]

Have you tried stelera ? It is suppose to be a different mechanism .
And has worked for some who can't take humira or remicade .

 

[Fosterfamily2303]

I literally have tried everything but Humira (Only because my GI does feel comfortable since the lupus)

 

[UnXmas]

I have a permanent ostomy. I don't think they should be viewed as a last resort; I wish I'd had mine done a lot sooner. I held off because so many people - doctors in particular - told me it was something to be avoided if at all possible. My life is much better with the stoma; many of my bowel problems were literally eliminated over night.

If you have problems with incontinence, urgently needing the loo, spending a long time in the bathroom, these symptoms may well improve greatly with the stoma. Depending on how much of your bowel is removed and the location of your disease, it may help with pain as well, and it may prevent the development of further complications in the future.

My ileostomy is very clean, quick and easy to look after, which is very different to how it was managing my bowel problems before I had a stoma. Some stomas are easier than others, but even if you do have problems, in a lot of cases, finding the right appliances, the right diet, etc. can help. It may not be as bad as you think.

 

[glum chump]

Like UnXmas, I wish I'd had mine done earlier. I, too, viewed it as 'the last resort' and had literally gone through every available drug, as well as every drug trial available to me. My stoma has given me my life back...

I love my life with the stoma. Although it was tough for the first three months after surgery, for the last two years, I feel like the pre-Crohn's me again. Back to playing tennis, running, swimming, eating almost anything I want, taking holidays...all without the anxiety of urgency/incontinence, pain, fatigue...

I totally understand your fear/discomfort with having your colon removed...I would encourage you to get more information about it, read through some of the posts in the stoma subforum, and maybe talk to a surgeon in order to decide if this is the route you want to take.

My ileostomy is permanent and I'm incredibly grateful for my stoma.

Kismet

 

[Fosterfamily2303]

Thank u for the kind uplifting words. How did u guys feel after surgery? How long were u in hospital? How long would I need help at home..As I have a 4 year old? Just trying to get an idea of your experience. If I have this done is will probably be in December. I gotta take care of my grandmother with her surgery first.

 

[rollinstone]

Hi foster family, sorry to hear your struggling so much but after hearing you say you've tried everything I have to let you know that there are still things you haven't tried that May very well get you into remission! Qu biologics are currently doing their trial for the SSI vaccine they've developed, there's a thread on here with some
Members that have been enrolled, it's open to Americans I highly recommend trying to get into it, it is very VERY promising to say the least, (maybe even a potential cure), the other thing is anti-map therapy which is also very worth a try, it has a remission rate of 90% and has given many CD patients that were refactory to other meds their lives back. Dr William chamberlain is your guy to talk to in the US, also a DR Naser, anyways I hope you read this and are able to give either one a go. You need to find a more educated GI, the ones that are still treating crohns as an autoimmune disease are in a solid need of more up to date research. We also have an anti-map thread on these forums please check it out, educate yourself and become empowered. I'm sure you've tried diet, and your GI has probably said diet has nothing to do w the disease but it definitely does, if you havnt looked into the SCD diet or paleo auto immune please give it a go, you can turn this thing around, just gotta dig deep! Bless you.

 

[UnXmas]

Thank u for the kind uplifting words. How did u guys feel after surgery? How long were u in hospital? How long would I need help at home..As I have a 4 year old? Just trying to get an idea of your experience. If I have this done is will probably be in December. I gotta take care of my grandmother with her surgery first.

I had serious complications after my first stoma surgery, which couldn't have been predicted. I was in hospital two weeks, and then it was about another six weeks before I felt myself again. My second stoma surgery, I was discharged from the hospital the same day, and felt fine after a couple of days - though my recovery was so quick mainly because I'd already had the first surgery, had my colon removed, etc. You're probably looking at around six to eight weeks recovery on average.

You should avoid lifting and bending after the surgery, so you probably will need help with your child for the first few weeks.

 

[2thFairy]

I went through all available meds as well and nothing helped me. I had my colon removed 2-1/2 years ago and am loving my new life!

Average hospital stay in the US is 5-8 days and recovery is 6-8 weeks. The first couple of months will be difficult. Having your colon removed is a shock to the body and you will hit a few rough patches, but your body will adjust.

 

[Fosterfamily2303]

Thank u everyone