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Facing Permanent Ileostomy

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Posted 7/11/2016 8:31 PM (GMT 0)
Hi all, I'm new to the site. I have been diagnosed with Crohn's for three years, had three surgeries, and failed multiple meds. In/out of hospital close to 10 times. I had a colostomy for 5 months, had that reversed, but the disease came back within 7 months. Currently I have a temporary Ileostomy but it's been suggested that I have a protocolectomy to remove colon/rectum, as that's where my disease is concentrated. Currently I'm doing ok with the Ileostomy, since I still have my colon and rectum (which have active disease) I still experience belly pain, low appetite, low energy, and frequent discharges. My GI thinks the protocolectomy should get me back to a normal life, but the thought of a permanent Ileostomy is terrifying. Plus, I'm worried that if I have the surgery, would if I don't feel better? Does anybody have a permanent Ileostomy due to Crohn's, and if so can you talk about how you have felt afterwards? Did your energy return? Currently I'm dragging through the days.
Posted 7/12/2016 12:35 AM (GMT 0)
Welcome, Red. My colitis was indeterminate -- probably Crohn's, but possibly UC. I was amazed at how much better I felt w/my colon out -- even while I still was miserable from the surgery, there was a way that I felt better immediately after surgery -- just a background level of being sick that wasn't there anymore.

I felt like I didn't realize just how sick I was until I had surgery -- so much more energy than I had for years. I would say that I have much more energy post surgery at 53 than I did when I was sick at 43...

My proctocolectomy was my first surgery, so I didn't have experience yet w/a colostomy or ileostomy before I had it permanently. I've had a lot of complications, but it's still so much better than when I was sick.

It is pretty terrifying to decide on a permanent ileo, but it really can make you feel a lot better.
Posted 7/12/2016 12:53 AM (GMT 0)
Hi: welcome aboard. I just celebrated my second total procto anniversary. I say "celebrated" since it is actually a blessing to have a new beginning at life. I, too, suffered from Crohn's for many years. All I can say: I have much more of a fuller life than before. I'm in the gym five days a week, swim, kickboxing, travel. Oh, and I'm 68 years old. Sure it was a shocking surprise to be told I had no other choice, but after the initial lifestyle adjustment , trial and error with products, diet, nutritional factors, blood work -- you will be just fine. Good luck, and remember you are not alone on your journey.
Posted 7/12/2016 12:12 PM (GMT 0)
Welcome Red. First let me say you are not alone. This forum has always been a lifeline for me and it will be for you too. It helped me get through the worst of my flares with Crohns disease and it gave me incredible support when I took my next step, which was total proctocolectomy. It is now 10 months.....and I never look back,

I also must say this is my first post since my surgery. Your post spoke so strongly to me.......so here I am!
Having the surgery did give me my life back. I really feel great! My disease like yours, was throughout my colon and rectum. I was fatigued, always anemic. Was in the bathroom constantly after eating.
I had tried many of the drugs including Entyvio. I had many hospitalizations & surgeries. I had a temporary ileostomy at one point but it was able to be reversed at that time ( it was about 20 years ago ).

Moving to the present.....Life is so much better. Once I healed....I moved on with my life.
As far as having an ostomy, I think of it as just another part of me. I have a nose...a mouth....and I also have an ostomy. With time you learn what pouching system works best. You learn little short cuts and tricks to make things easier for yourself. You can move on with your life and not be encumbered with a sick and diseased rectum and colon.

I wish you all the best. The forum is always here for you. No question is a stupid one!
Good luck.
Posted 7/12/2016 1:00 PM (GMT 0)
I have Crohn's and just had my total proctocolectomy in March. I first had a temporary ileostomy for a resection. But once I was reconnected I only made it about a week without disease and it came right back. So here I am permanent.

I was always exhausted, in pain, always anemic, just felt constantly rundown and not myself. All that went away when they took out my entire colon and rectum. My disease was lower left colon and really bad in my rectum. Even while healing from surgery it was like my body already felt calm and relieved like it had stopped fighting. I am now 4 months out and have not felt this good since pre Crohn's diagnosis. All my blood work is normal which hasn't happened in years. I have normal energy. I can now work all day, go to the gym, come home and be with my family and fix dinner and still not feel exhausted. Previously getting through a work day was all I could handle, I would come home and go to bed.

I am only in my 30s so sometimes it was overwhelming to me to think this is permanent and I will have this for another 40 or m50 years, however I don't think ahead anymore. I think about right now because right now I feel great and that surgery gave me my life back!

I wish you luck in your decision. It is scary and overwhelming but from experience at my support group and on here is that the majority with Crohn's feel so much better and do not regret the surgery.
Posted 7/12/2016 6:36 PM (GMT 0)
All,

Thank you so much for sharing your own stories, these really are a source of strength in this difficult time. It's great to hear that you all are able to live such active lives, that is something I certainly look forward to one day. I have a colonoscopy/ileoscopy this Thursday, which should give some better insight as to how everything looks. The toughest part for me right now, believe it or not, is that I don't feel that bad. Ever since the temporary Ileostomy (3 months now) I've had good weeks/bad weeks, but my bad weeks are nothing compared to when I was fully connected. So it makes it difficult to make the decision to have the protocolectomy when I feel relatively good compared to the last three years. I guess what im the most terrified of is if I have the protocolectomy but don't really improve that much overall. But again, hearing how well each of you are doing has been very helpful for me. Part of me wishes I felt horrible right now so I could just get the surgery over with!

For like two weeks after my surgery to get my temporary Ileostomy I felt unbelievably good. I had this energy that kept going and I was able to do so much in the evenings even after a full day of work. Even mentally I felt so much clearer. It was really weird because I never knew I could feel that good. I kept thinking it had to be a side effect from an increase of prednisone or some other medication I was on. But then slowly that 'feeling good' faded and I returned to lethargic, and was struggling to just get through the days.

I too am on Entyvio, no signs of response yet but this Thursday will bring more clarity.

Another question - do you all use pouches with or without the filter? Any thoughts on choosing one over the other?

Thank you all gain for sharing!!!
Posted 7/12/2016 8:33 PM (GMT 0)
I am using the coloplast 1 piece Mio which I really love. I get great wear times and the filters are really working for me.

I remember that early on after my ostomy I tended to have much more gas.

As time went on it got better.

Of course gas issues can be kept  minimal by diet....avoiding foods that will produce a lot of gas . Also chewing gum and taking in a lot of air can cause gas.

I often chew gas X  when I feel the need to.

 

Posted 7/12/2016 10:35 PM (GMT 0)
I've been using a two piece - I like it but then again I've never tried anything else. But thanks for the info and I'll keep your advice in mind!!
Posted 7/13/2016 1:56 AM (GMT 0)
I use the 2 piece Mio Flex and love it. I'm indifferent about filters bc I don't think any of them work that well and I only have gas at night when I don't eat so I don't really need them.

Your story sounds similar to mine when I had my temp ileostomy. Initially after surgery I felt awesome. Then after about 6 weeks I still felt good, much better than when I was sick but I started having a little bloody mucus and feeling like I was in a minor flare. I think that should have been my clue that a reconnection was a bad idea but my GI convinced me it was diversion colitis and I could still be reconnected.

Once the whole colon was out it was a world of difference from even when I had my temporary.
Posted 7/16/2016 4:46 PM (GMT 0)
That's good to hear - thanks again for sharing!!
Posted 7/16/2016 6:25 PM (GMT 0)
I had a total proctocolectomy with end ileo because of ulcerative proctitis. However, my surgeon left the anus...another story. It became diseased in 2014, four years post op, but things are getting better. I think the disease subsided because I no longer have pressure. OK...on to bags..I use the one piece Coloplast Sensura. It does have a filter, but I have no idea why. The filters become full of poop within the day. I like it because they started me on the one piece Hollister and I had two blow outs. The bags just ripped right down the seam shocked !!!! I never had any accidents with the Coloplast. June 28th marked my 6th year with my ileo. I will be 70 August 12th and I feel better now than I did 15 yrs ago. My problem is I forget to drink a lot of water and that is totally necessary. Good luck to you!!!
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