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

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Posted 1/8/2016 12:27 AM (GMT 0)
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?
Posted 1/8/2016 1:32 AM (GMT 0)
Aww, i am so sorry to read this. I was rooting for you to have an easy time. So frustrating. I can't imagine how annoyed you must be with all of this. You were doing great with the ileo. I understand preserving but I also understand your side and wanting to live your life. Maybe the trial med will work for you and you can get back to good health without any more surgery. NCOT had her colon removed and has Crohn's. I am not sure who else :(
Posted 1/8/2016 1:51 AM (GMT 0)
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.
Posted 1/8/2016 1:54 AM (GMT 0)

notsosicklygirl said...
Aww, i am so sorry to read this. I was rooting for you to have an easy time. So frustrating. I can't imagine how annoyed you must be with all of this. You were doing great with the ileo. I understand preserving but I also understand your side and wanting to live your life. Maybe the trial med will work for you and you can get back to good health without any more surgery. NCOT had her colon removed and has Crohn's. I am not sure who else :(

There were lots of people with Crohn's but none of them post any more or only once in a blue moon.

I can only hope it's because they are Crohn's-free and enjoying life with an ileostomy. Larasmom was one who posted recently, and it was to say how well she's doing.
Posted 1/8/2016 2:47 PM (GMT 0)
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!
Posted 1/8/2016 3:11 PM (GMT 0)
Yeah, my first ileostomy worked pretty well really. If my second ileostomy isn't as good, or the Crohn's comes straight back, I'll probably spend the next decade kicking myself for ever deciding to go for a reversal.

I'll also have my rectum removed if I have another ostomy but I'm absolutely fine with that - I'm just about ready to have nothing to do with my rectum ever again.
Posted 1/8/2016 8:23 PM (GMT 0)
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?
Posted 1/8/2016 10:14 PM (GMT 0)
I am 37. Last time my surgeon and I discussed it we were thinking subtotal colectomy. He definitely is more understanding than my GI and I think willing to do it. When I last saw him I was only 2 weeks out so he told me to have a little patience but to keep him updated because he would operate again.

I'm wondering how soon again is safe to operate and if the wound I still have from my ostomy will create an issue for future ostomy location.

I think my GI wasn't listening to me and the whole picture. She kept talking about number of times and the convenience of not needing the toilet when it is so much more for me. Do I hate accidents and going 10 times a day? Yes. But what I experienced in the 10 weeks with the ostomy was whole health. I had so much energy and my body was calm. I could workout, work a full work week without exhaustion, slept pain free, and was social again! My quality of life was the best it's been in years.

My GI did say when I saw her that my surgeon did tell her I wanted my stoma back.
Posted 1/8/2016 11:02 PM (GMT 0)
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.
Posted 1/9/2016 12:57 AM (GMT 0)
Hi All,
I am 8 weeks post surgery for permanent ileostomy where I had both my Anus and Rectum removed. I had been on Entyvio for a year but it did not work for me, along with many other infusions over the years. I also suffered with fistulas and had a seton in place.
A few months ago after suffering for years, having no energy, tiredness and all the other effects with Crohns i asked my GI about the possibility of surgery, thinking i would take the temporary route to give the remaining large bowel a rest and the rectum. However after talking to my surgeon and asking lots of questions, reading all the books and material i could get my hands on, i decided to go for a permanent ileostomy. I have absolutely no regrets whatsoever. I am the happiest I have ever been in 31 years of being diagnosed with Crohn's.
I know that this awful disease can come back to small bowel of which some has already been removed over the years, and I may have to try something else in the way of meds but I will worry about that when it happens. It has to be your decision but you do need people on board who help you and support you and have a positive outlook.
I am 46 with three children and now have the energy to get more involved and the best bit of all is I never have to rush to the bathroom when I venture out the house!
Good luck to you cupcakespinsgal I wish you all the very best and hope things get better for you soon.
Posted 1/9/2016 4:52 AM (GMT 0)
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
Posted 1/10/2016 1:09 PM (GMT 0)
Cupcakespinkgal, I am not on here very often anymore but am happy to help you. You can email me anytime (in profile)

My story is long......emergency surgery after perforation from a scope, temp loop ileo for two years before I had my permanent ileo surgery with rectum removal. Since day one of my diagnosis, my Crohns was only in the rectal, large intestine area. Never a sign of anything in my small bowel.

After my first surgery, I stayed on Humira to ensure the disease was well managed before my second surgery. I knew in my heart that I was never going to be a candidate for a reversal so mentally I was ready to have the colon gone and move on. I healed really well after my second surgery with the exception of my butt wound.

Last August I had a small procedure to clean out the wound and had a seton placed. It was still draining and was very uncomfortable so the plan was to go back in, clean it out again and use a wound vac. So I had another MRI, saw a plastic surgeon and then went back to see my surgeon the first part of December. I literally begged him to take the seton out which he did and asked me to come back in a month so they could come up with a surgical plan for the wound. So we went back last Tuesday and the butt wound is healed! Amen! I have a strange pocket of fluid around my ovaries which I am being referred to a gyno for but otherwise I am finally healed.

With all of the testing that I have had since my first surgery in 2012, there is still no sign of Crohns in the small intestine or anywhere else. I am now on zero medications, am eating whatever I want, I am going back to yoga and am starting to work with a personal trainer. I am so happy with my surgery and the outcome.

Email me if you want to talk further but I agree with the others, you need to see your surgeon or a different GI. I was so very lucky that my GI is in constant contact with my surgeon so I know whatever one knows the other knows as well. I have had exceptional care!

Kelly
Posted 1/16/2016 2:28 AM (GMT 0)
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
Posted 1/18/2016 3:25 PM (GMT 0)
Thank you for all the replies. Still struggling but doing better although no thanks to my doctor. The prednisone made me worse, which at first was awful but then kind of caused an ah ha moment.

I was on cipro and flagyl for months before and after surgery. I had a vaginal yeast infection and coating on my tongue not too long after my closure. I wondered if I could also have a yeast issue in my gut. Kind of forgot about it until the prednisone made me so much worse. Upon researching, prednisone comes with a warning to not take if you have any kind of fungal infection. It will fuel the fire. So on a hunch I stopped the prednisone, cut out all sugar, and tried eating more foods that are naturally antifungal. Everyday I feel a little better. I'm interested to stick with this and see how much of my flare this can control.

Although also a bummer that I'm back to being witch Dr trying weird diets and such to feel better. I loved eating whatever I wanted with my ostomy with no repercussions.
Posted 1/22/2016 10:27 PM (GMT 0)
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!
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