3 weeks post closure and right back where I was a year ago

Tomorrow will be 3 weeks from my ostomy closure. Although surgery wise I healed the disease is already back. By signs from my body pretty sure it was back 6 days after surgery. Saw my GI. yesterday and she said I am in a flare and she put me on prednisone.

So now here I am after a month on TPN, 2 surgeries and I am no better off than a year ago. Feb 2015 I was on prednisone and medical leave from work. If the pred doesn't calm things down she wants me to do a clinical trial as I am out of medical options. So when I brought up again that I want my volon out I got the same speach about this is crohns and we need to save as much intestines as we can. Why? My disease has always been in the colon. In 18 years never 1 sign of disease in my small imtestinr. I know lots of crohns patients on here who have a permanent ostomy. Its not even just the bathroom part. I'm back to being exhausted and pain from inflammation. I don't know how I'm going to go back to work.

I'm really bummed out and all I can think about is how my first emergency surgery was suppose to be permanent until other Drs reviewed my case and said I was too high risk for the surgery. Now I'm stuck with a resection that got me nowhere!

For those with Crohns how did you end up a perm ostomy?

Oh crap.

Did your GI decide you were in a flare from symptoms alone or did she order tests? I had my reversal operation last July and ended up in the same boat as you. At first it wasn't obvious, because I had a horrendous 10 days or so after the operation - developed an ileus. After that was over, I felt much better but the euphoria didn't last for long. For about a month I managed to persuade myself I was still recovering from surgery, but there came a point when I just knew something else was wrong.

My GI ordered blood tests and a faecal calprotectin test. They came back positive for inflammation. I've also had a pelvic MRI and flex sig, and am now waiting on a small bowel MRI to see if I have Crohn's of the small bowel. (Both the pelvic MRI and flex sig showed Crohn's in the rectum.)

My GI prescribed me mesalazine suppositories/enemas, but the suppositories made me bleed - I have never been able to tolerate mesalazine. I'm seeing him next week and will discuss meds then.

How much of your colon was resected? And how much of your colon is the Crohn's affecting now? In my case, I had pancolitis and about 90% of my colon was removed. I supposedly didn't have Crohn's in the rectum, but now the surgeon thinks it may never have really went away all along. *rolls eyes*

Anyway, I shouldn't have any issues about going back to an ileostomy. My surgeon is on board and I think my GI will be too. I haven't 100% decided what to do yet - it will partly depend on what my GI says when I see him next week. By the way, I did have small bowel disease. It was only confined to the terminal ileum, but it was severe. That bit was cut out obviously. I was always scared it would come back but for 2 and a half years it didn't. I just have this feeling of dread that if I go back to an ileostomy, I won't be so lucky a second time - there's probably no rational basis for that belief though.

I haven't ended up with a permanent ostomy yet, but it's a virtual certainty I will. Probably some time this year.

Apologies for my long and rambling post. It's that time of the night.

Bloodwork and my symptoms pretty much decided I was in a flare. Some issues I had right after surgery have resolved so I feel like everything now is flare symptoms.

The surgeon said if I wanted another ostomy he would do it but it would be permanent. My GI is the one against it. They work pretty closely together. NCOT I have a similar fear to you that if I go back to am ostomy it don't work like the first one or small bowel issues will pop up. I hate thinking like that but at this point I feel jinxed. I never get a break!

Cupcake - make an appointment with your surgeon. Your GI stinks. Sorry, just gets me mad when doctors don't listen to their patients. From what you say you sound like an ideal candidate for an ileostomy. Can the Crohn's come back in other parts of your digestive tract? Of course it can. Or it might not. But if you have a raging flare in your colon then right now there's more chance of damage from that than from some possible future small bowel activity. Let your GI know you understand the risks and you understand it's not a cure and that you will still need to be on medication. It is your body and you are well-informed.

I have Crohn's and had an ileostomy (effectively permanent) put in almost two years ago. I am doing great. I was in a flare for 8 months primarily affecting my colon. By the time I had it removed there were pockets of infection so severe that the doctors were shocked. There was no way to save it. I was the one opposed to the ileostomy and my surgeon was pushing for it. I'm glad I finally listened. My life is so much better now. You had a taste of it, you know. I know the risks, I know it will probably come back, but I'm actually getting to live life now, and that is so worth it, even if it ends up being like this for only a few years.

I started Entyvio almost immediately after the surgery and I am doing well on that. I was left with two fistulas after the surgery that had been open and draining for years, and after a year on Entyvio they closed up and went away. I just had my small bowel scoped and barium x-rayed and there are no signs of any Crohn's.

So if you want the surgery go for it. What does your surgeon want to do? A total proctocolectomy? I went with the subtotal colectomy which preserves the anus and some rectum. If I may ask, Cupcake, how old are you?

I have to say, it's not your GI's decision whether you have surgery or not. She can give her opinion, but at the end of the day it's between you and the surgeon.

Also, just my opinion, but I reckon you're better off removing the whole lot and getting your rectum sewn up. If you leave it in, chances are you'll develop diversion colitis/Crohn's in there. I developed diversion coiltis and while it wasn't nearly as bad as it is now, I still could have done without it. Besides which, I don't want lingering inflammation in my body for years on end.

Hi Cupcakespinkgal, I just wanted to say I'm sorry things have regressed in such a way for you. It's dissapointing for sure, frustrating, all of it. Terrible.xo

I've been indeterminate all along but more likely to have crohns and all disease was in my colon and rectum. I had a proctocolectomy with permanent ileostomy as my first surgery. I've had a lot of surgical complications but no small intestine involvement in the five years since surgery. I has extra intestinal complications and they all went away after surgery. I saw a picture of my colon after surgery and that made it so clear that taking it all out was the right decision -- the whole transverse part was so skinny and scarred -- it wasn't going to get better. I am so glad to not take all those drugs anymore. No regrets.

I don't understand keeping your colon when it's the source of so many of the problems. for me if I did start having small bowel issues I'd be glad I wasn't also having large bowel issues (which would be a given if I still had the always inflamed colon)

Hope things start to get better

Sorry to hear that!

I'm a CD patient who did have small bowel involvement BUT the majority of my issues had been rectal...so long story short I did have temp ileo for about 8 years and stayed on Cipro and Imuran. That controlled things for a while but eventually they stopped controlling the issues. Thats when I had my colon/rectum/anus removed. I had fistula issues so my healing was slow but I did heal.

I didn't do the final surgery right away (and I thank my surgeon for being conservative) because of the small bowel involvement...if I hadn't had that he would have done it sooner. It took about 4 months once the pesky colon/rectum/anus removal to really feel like all the additional aches and pains were gone.

I was lucky my GI and CRS worked together well and both were on the same page with me. Can you get a consult at a teaching hospital? Those doctors have seen it all and might understand your situation better.

p.s. I did have emergency surgery that resulted in a ileostomy, had it reversed, had issues just like you, and asked for another ileo. I think it was about 5 months post reversal when I had my second ileo.

I hope you get some relief soon!