Crohns + Ileostomy = drug free?

[Sifu]

Hi All,

Still trying to come to terms with having an ileostomy and have been wondering ever since agreeing to do the surgery if I was at the point where it was the only option. My consultant GI doc had said it was the right thing to do and saw me briefly in the ward post op and also said it (colon) definitely needed to come out...I guess over these years I have been putting the disease at the back of my mind and trying to get on with my life without obsessing over the details. I will have lots of questions for him in the next clinic appointment.

Prior to surgery I was on azathioprine and vedolizumab (which I didnt respond to after loading doses) after having been on remicade and humira. In terms of biologics it seems I have exhausted my options which is why I agreed to to it in the first place. However, reading more and more into the side effects people experience from these drugs, to be honest I maybe would rather just have to deal with having a bag if that makes sense.

I just wanted to know what people with crohns experiences are with the ileostomy and if it has kept them drug free?

Sifu

 

[Tommy21bn]

Hi Sifu

I have an ileostomy and I also take Humira to control Crohns. People make their own decisions about what they are willing to tolerate to manage their disease symptoms. Having a Stoma is one of those options and not a cure, sadly.

In my case I had a Toxic Megacolon and therefore I had no choice as to whether to have a Stoma. Without the Stoma I would have died. I still think that the Ileostomy has helped to control my symptoms as I now have less bowel and no rectum.

I know that you are in a difficult place adjusting to having a Stoma, I remember those feelings well. You will, given time, learn to adjust and realise the positives that a Stoma has given you.

I hope you remain drug free and the Stoma behaves itself. If you have any questions please let me know.

All the best.

Tom

 

[VeganOstomy]

When I had my surgery (over three years ago), I asked my surgeon what the chance of reoccurrence would be. She said that in my case (Crohn's only affecting my rectum and the last half of my colon) that a relapse would be very slim in the next 20 years (I forgot what percentage she gave me, but it was a small number).

I've been drug-free since my surgery and have been doing very well.

If Crohn's is in other parts of your GI (stomach, small intestine, ileum, etc.) then recurrence is much higher and drugs are usually needed.

Since I failed on all the drugs I was put on, I really hope I don't relapse any time soon!

 

[Tubes]

I too had Toxic Mega Colon so I had no option I had my 1st surgery over a decade ago and I wasn't on any crohn's meds till the last month or so.

 

[Grotbags]

Sifu you've pretty much described how I was before my lileostomy, I've been drug free and fitter than I've ever been since my op over two years ago, best thing that ever happened to me.

 

[Dukeis]

I had my surgery over 4 years ago. I had dysplasia after 20 years of Crohn's and never wanted to play Russian Roulette with them checking every 6 months to see if it had advanced to cancer.

I was on Humira until a couple of months before my surgery. I stopped taking it on my own because I feared an infection post-op. Thankfully I did because I had abscess by stoma about 1 month post-op. I have not been taking any type of Crohn's meds for over 4 years now and have been symptom free and hope it stays that way.

 

[ronroush7]

I had my surgery over 4 years ago. I had dysplasia after 20 years of Crohn's and never wanted to play Russian Roulette with them checking every 6 months to see if it had advanced to cancer.

I was on Humira until a couple of months before my surgery. I stopped taking it on my own because I feared an infection post-op. Thankfully I did because I had abscess by stoma about 1 month post-op. I have not been taking any type of Crohn's meds for over 4 years now and have been symptom free and hope it stays that way.

I hope it continues for you.

 

[DanM]

Keep in mind that Crohn's is an immune disorder. Your Colon is the unlucky SOB that takes the brunt end of your immune system's problems.

Surgery only removes the damaged and diseased parts of your colon. You still need to treat the immune system to keep it from starting all over again.

My resection was 6 years ago and I have been taking Humira since.

 

[ronroush7]

Agreed

 

[Dukeis]

Keep in mind that Crohn's is an immune disorder. Your Colon is the unlucky SOB that takes the brunt end of your immune system's problems.

Surgery only removes the damaged and diseased parts of your colon. You still need to treat the immune system to keep it from starting all over again.

My resection was 6 years ago and I have been taking Humira since.

The problems that Remicade and Humira have caused I'll continue to take my chances without any type of biological.

 

[exit4]

I have a ileostomy to help heal my fistula. Had it done last year in July, my fistula kept getting infected and abscessing all the time, antibiotics did little help even with a seton. I still have the seton in fistula, the stoma did help my infections. I am now on Stelara and feeling better, hoping to keep getting better and at some point in the future to reverse ileostomy. The stoma surgery was not to bad - a lot less pain and discomfort now then living with infected fistula. Stoma is a challenge on itself - took a while to figure out what bags and barriers to use, how long to keep on till change, skin issues, etc.

 

[Susan2]

I had a total proctocolectomy in 2000. It took a long time to heal as the surgeon removed a large mass of badly affected flesh with the rectum but I haven't taken any Crohn's medication since. I have a very careful GP who checks all the indicators regularly and I watch my diet.

 

[njyupyup61]

Hi All,



I just wanted to know what people with crohns experiences are with the ileostomy and if it has kept them drug free?

Sifu

Hi, I still have to take prednisone. but that's for arthritic conditions associated to IBD. about 5 mg... and a little bit of mexthrotrexate. so for me, no.. I still needs meds. also Crohn's has moved in the rectum. even though I am no longer attached there, there is discharge os bloody mucus which for now suppositories are helping. you will never be free of Crohn's.. it just may lay dormant.

i'm sure others are in better situations. good luck. keep us posted.

 

[lgpcarter]

I have a ileostomy to help heal my fistula. Had it done last year in July, my fistula kept getting infected and abscessing all the time, antibiotics did little help even with a seton. I still have the seton in fistula, the stoma did help my infections. I am now on Stelara and feeling better, hoping to keep getting better and at some point in the future to reverse ileostomy. The stoma surgery was not to bad - a lot less pain and discomfort now then living with infected fistula. Stoma is a challenge on itself - took a while to figure out what bags and barriers to use, how long to keep on till change, skin issues, etc.

Wondering if you still have stoma and how fistulas are behainvg? My bowel symptoms are well controlled but fistulas still awful and I think a new one just opened up.

 

[ronroush7]

Wondering if you still have stoma and how fistulas are behainvg? My bowel symptoms are well controlled but fistulas still awful and I think a new one just opened up.

I am sorry.

 

[lgpcarter]

Thanks Ron. Always appreciate your support.

 

[minimoo]

I dont take meds after my colon was taken away , I asked my doctor about this,, he said I dont need to and doesnt think my crohns will come back but I know this is still a possibility but I wouldnt take meds which seem to upset people so much by their side effects , if the crohns comes back it comes back,, it can come back even while on meds so really its all a luck of the draw , but I rather not take meds an feel shite for rest of my life for possibly no reason when the crohns may never come back