When the meds fail

[lookame]

It appears that my cocktail of drugs just isnt cutting it. My colon looks like ground hamburger and humira, 6mp and lialda arent doing a thing to help it. The next step is to have a surgical consult and remove my colon with the hopes of getting a j pouch and resectioning it later. It hasnt hit me yet how severe my disease is...or if its my fault im as sick as i am. Maybe my colon is still raw from the bout of c-diff i had about a month ago..or...maybe im in denial and im sick. So now i have a decision to make...say goodbye to this diseased colon or keep it and hope for the best. I dont need to make it now ive still yet to see the susurgeon.

Im curious though...without my bleeding ulcerated colon...would i still need iron infusions every few months? Would i be able to gain weight? Would accidents and missing out on activities be a thing of the past? I know almost everyone who has an ileostomy says they love iit, best decision ever made but how long did it take for you to love it? Can you eat whatever you want now or is it still monitor what you eat? Do you still take a maintance drug? (as a side note bloodwork shows indeterminate ibd, biopsies from 5 yrs ago were crohns but that was with a different dr, and symptoms and everything else lines up UC) if it turns out to be crohns ccolitis would removinh my colon just be extending anouther flareup?

 

[2thFairy]

Hiya, lookame!

So sorry to know you have come to this with facing surgery. I can only tell you of my experience. I was diagnosed with UC. Once the colon was gone, instantly off of all maintenance drugs. With UC, a colectomy is considered a cure. Some people, however, find out years later that they had Crohn's disease all along. So, if yours is indeed UC, no more meds and no more iron infusions (if needed due to blood loss) after colectomy.

I have a J-pouch formed, but have kept my ileostomy instead. It's been three years since surgery and I still love my stoma. Probably around a month after surgery I was truly building an affection for it. I could leave the house without fear of needing a bathroom at a moments notice, I was already eating foods I hadn't had in years, and NO MORE PAIN!

There will be a lot of adjustments in the first 3-6 months with an ileostomy and even more adjustments after that if you do have a functioning J-pouch connected. I can now eat anything I want, no UC meds, and I have a new career outside of the house after 10 years of working from home. There is another website just for those with a J-pouch that you might want to check out. It's called The J-Pouch Group:

http://www.j-pouch.org/

For me, life began with a colectomy, not ended there. Do lots of research and ask lots of questions. We're here for you!!

 

[UnXmas]

curious though...without my bleeding ulcerated colon...would i still need iron infusions every few months? Would i be able to gain weight? Would accidents and missing out on activities be a thing of the past? I know almost everyone who has an ileostomy says they love iit, best decision ever made but how long did it take for you to love it? Can you eat whatever you want now or is it still monitor what you eat? Do you still take a maintance drug? (as a side note bloodwork shows indeterminate ibd, biopsies from 5 yrs ago were crohns but that was with a different dr, and symptoms and everything else lines up UC) if it turns out to be crohns ccolitis would removinh my colon just be extending anouther flareup?

I rarely have leaks - I had far more accidents before my ileostomy. I loved my ileostomy from the moment I got it (possibly even before, or at least I hated my digestive system before). At first I had to radically limit my fibre intake to avoid blockages with my ileostomy, but now having had further surgery and a different kind of stoma, my diet isn't limited.

I think your other questions about iron infusions, weight gain, etc. will be more specific to the type and location of your disease.

I had severe rectal problems before my ileostomy, I kept getting prolapses too, and had each prolapse surgically repaired only to have my bowel prolapse again. I love my ileostomy because it ended years of having to spend literally hours in the bathroom every day, in pain, having embarrassing accidents. My ileostomy takes a few minutes each day to clean and care for, I've only had leaks when there was something specific wrong, and my stoma nurses changed me to a different type of bag. With the right bags, I have random leaks, maybe once every few months or so.

 

[lookame]

Thank you both for your replies. Im nervous about surgery and go back and forth on whether to get itor wait, the deciding factor is probably at the consult. I have days which arent to bad, go roughly 3 times and although its diarrhea and bloody its not super painful and i can go about my day normally. Then i have bad days which i miss out on activities because i had an accident or im walking around with a stomach ache all day. Im also having to wake up atleast twice a night to use the bathroom and if i drink more water i have a lot more watery diarrhea.

How did you feel after surgery? Were you in a lotof pain? How long didit take before you felt decent again? Should i arrange to have a lot of extra help during recovery(i have 2 kids-a 7 month old and an 8 yr old) how longwould ineed the extra help? Ive been trying to search but im finding general infinfo which isnt helping much.

 

[UnXmas]

My own experiences of recovery were very atypical (I had complications, due to other medical problems that I have, as well as post-surgical ileus), so they won't give you a useful idea, but my surgeon said most people need about six to eight weeks to recover. You have to be very careful about lifting anything heavy, so you will need help with your seven month old especially for that time.

 

[Nyx]

How did you feel after surgery? Were you in a lotof pain? How long didit take before you felt decent again? Should i arrange to have a lot of extra help during recovery(i have 2 kids-a 7 month old and an 8 yr old) how longwould ineed the extra help? Ive been trying to search but im finding general infinfo which isnt helping much.

Hi! To answer your questions: I didn't have a lot of pain after the surgery, I was on gravol and demerol for the first 5 days in hospital, and then was offered Tylenol 3's but I didn't need them. I had complications with my surgery, but they're not all that common (I developed 2 pulmonary embolisms and got a blood infection from my PICC line). I spent my recovery at my mother's house, and that was about 3 weeks. I'd recommend getting some help for when you first come out of the hospital, especially with a 7 month old. I found I just felt tired after the surgery, and was really appreciative of the help and not having to worry about cooking, cleaning, etc. After about 3 months, I felt completely normal. It's mostly getting used to the stoma and taking care of it that takes time.

Good luck to you!!!

 

[Grotbags]

I had my surgery ( ileostomy ) last December, I had come to the end of the choice of drugs, they all stop working after a while for me, and I wasn't getting any relief even with steroids.
My whole colon was a mess, plus they had found some pre cancerous cells, so it was a no brainer for me.
I was in hospital for six days, no complications, and with the pain meds I was on, no pain , I could have gotten out on the fourth day, but I missed the stoma nurse who has to " sign you off " as being competent to change the pouch, and they don't work weekends.
I took to my stoma straight away, and yes I did get my life back, I don't have any pain or nausea any more, which was the norm for me.
I can now go where ever I please, I don't give it a second thought, I used to avoid using public loo's before because of the noise and smell when I went.
But it doesn't bother me now as my output has very little smell, it tends just to smell of whatever I've eaten,it's also very quick to empty your pouch.
I've never had any leaks, some small issues with sore skin round my stoma, but re-sizing my pouch fixed that.
I do have to get up about three times during the night to empty as my stoma is most active at night, but on the other hand it means I only have to empty once during the day.
Recovery wise, I was ready to get back to normal after about six weeks, I wasn't out of action for all those weeks, just taking it easy, I was determined I was not going to get a hernia, so I avoided lifting as much as possible.
My only regret is I didn't get it done earlier.
Good luck, I hope everything goes well for you.

 

[Grotbags]

Forgot to add, it turned out on biopsy that I did have cancer in my colon but thankfully it was grade one, and no spread, so I think myself very lucky.

 

[lookame]

I have a consult scheduled on April 7th. I'm on state insurance like medicaid and unfortunately that leaves a narrow window of doctors who accept my insurance. The surgeon I've been referred to only goes over referrals twice a month and is only in office on thurs so it's taking a longer than I expected (but remarkably when I heard the limited practice hours I expected it to take longer...) anyway I'm starting to write up my list of questions...any suggestions on questions I should make sure to ask?

 

[Grotbags]

There s a " sticky" further up the surgery page on what to ask your surgeon

 

[lookame]

So...I saw the surgeon today and I'm feeling better about proceeding with surgery. The issue is my biopsies came back- the good is there's no infection the bad is I had both UC and crohns cells in the biopsies. The next step is to get an MRI and check small bowel involvement. If there's no small bowel they are fine with proceeding with removing my colon, if there's small bowel then we need to revisit other surgerical options...or other medical options...I guess we'll see...

 

[fuzzy butterfly]

Hi not sure where your upto now, just seen thread. I had an ileostomy 16 months ago for crohns as I was in agony after meds failed me. I had roughly a week to get used to the idea of a stoma. When I first saw it I thought oh ok it could be worse but I loved it as soon as I realised I wasn't in pain any more. Hetty as she was known was my best friend for 11 months before she was reversed. Actually miss her in a way although I'm doing really well at the moment. So if you haven't had surgery yet hope this helps, if you have I hope all has gone well and you are well too.!!!