Thanks for sharing your experience Lori. Great to hear you are doing so well.  Can I ask you, are you on any meds to prevent the disease from ‘showing’ up elsewhere? Or have things been completely quiet since the stoma?

That is the million dollar question. My local GI peeps (which suck) have been trying to put me on meds for years. Cleveland Clinic says this is the closest thing to a cure that I can get and have not talked meds when I bring up the question. They just said I should get rid of the pouch. It took me a long time to get to this point mentally, but if I need meds, I will deal. Before I had the mentality that if I have to live with a stoma, I deserve a med free life as a “reward”. I would love to be med free but I finally accepted that Crohns is never gone or over and unfortunately it is gonna be a way of life forever with its good times and it’s curveballs. I go back to Cleveland next week for a post op visit so I am going to ask them how do we know if/when meds are needed. The only lingering issue I have right now is a cranky spot (on the side opposite my stoma) in my abdomen...feels like a dull pain with some cramping now and then. Hoping this is part of healing. Of course, I am worried about this but I am trying to stay calm b/c I think I could make myself believe that I have anything (Adhesion, cancer, bubonic plague😱) at this time. Ahhhh...the joys of being a patient. Hope you are doing well! I will post when/if Cleveland gives me an answer to the million dollar med question. 

Glad to hear you're doing well, Lori!  I had my removal/BB at Cleveland Clinic (Dr. Tracy Hull), and she stitched me inside, as well - that's the way to do it!  I recently stopped all drainage (after about 9 months).  No drugs outside of imodium.   I also had several spots of discomfort that turned out to be nothing, they went away with time - I hope your experience will be the same.  I'm so glad your have a decent stoma, that's 9/10ths of the battle, IMHO.   I am a little curious about a loop ileostomy with nothing(?) below it?

Stay well, and continue the healing!

Welcome to the club! 

It's a good club. 

I'm a man so I don't call it a BB.  And it was sewn from the inside and I still have my spinchter and a bit of anal canal left. About an inch. I'm glad she didn't take it all out. Sounds like it would be painful and a long healing process  had the whole thing been taken out.

I had uc not chrons so I take no medication of any kind. 

Good luck! 

Richard. 

Does anyone know how to avoid an ileus? I really don’t think I can handle obstruction symptoms on top of everything else and NG tubes are truly evil - not to be too dramatic about it lol

N/A-I really don’t know how my loop ileo to nowhere works exactly. The surgeon explained that they would keep the ileo as is and basically just cut and sew the bowel shut at the end ileo portion to take care of the mucus down below problem. I have a follow up this Friday so I am gonna try to get more detail b/c my local peeps-who I may need in an emergency-are so clueless as it is. A loop ileo to nowhere is gonna blow their minds🤯.  I am so glad to hear you had spots of discomfort too-gives me hope that it is all part of healing. I contacted Cleveland with my concerns and they said you are only 3 weeks out of surgery. And you are older now-45. I had my J pouch surgery done when I was 18 so they said unfortunately healing takes longer with age. My butt is doing so well that I guess I expect everything to be on track with the butt healing. 

Mysticobra- Thanks for the welcome! It has been a long time coming. Still so happy with no butt😁. Maybe you can call yours a KB (Ken butt). Sexist surgery!!

Jayda-If anyone finds a way to avoid the ileus/NG tube from hell-please let me know! I rather be cut open than live with that tube in. There is a drug that is supposed to help post-op-not sure if anyone uses it.  Chewing gum, limiting use of opioids, introducing diet sooner rather than later if possible, walking are all supposed to help. Not everyone has an ileus/obstruction after surgery.  My J pouch was in for over 25 years and this was my 9th time being cut open (full cut each time, no laparoscopic) so I think this made things way more difficult with all the adhesions and scar tissue. The surgeon said my J pouch was stuck to my uterus and it sounds like he went through a lot to keep my uterus. I am already menopausal so I wish I remembered to tell him to take whatever other organs he had to take since those female parts are useless to me now anyway. Not sure that had anything to do with my ileus/bowel obstruction but I always felt the intestines don’t like to be handled and rebel via ileus/obstruction.

Thanks! I’m going to ask about this mystery drug and also buy lots of gum. Learning from my surgical history I know that I will not be able to limit the pain meds and in fact know that this will be the most painful surgery yet. Plus this will be my 7th surgery and I know I have A LOT of adhesions too so I really really hope I don’t have to go through what you went through. I am so sorry you had to live that!

On a separate topic, I have a “closed loop” ostomy. I had an open loop, but I was convinced that my leakage was a result of output coming out of my stoma and going back in my loop, through the dormant j-Pouch and out my rectum. So during my last surgery my doc closed the opening to the loop, but in order to “feed” the j-Pouch and other relevant tissue, the beginning of the “loop” needs to be connected to a blood supply so it is still sown to the internal side of my ostomy. Maybe they did something similar with you. BUT in your case they needed to remove your j-Pouch that was farther down the piece of loop bowel - so maybe they left a “loop-stump” for lack of a better term so as to not disrupt your perfectly functioning ostomy. Maybe? 

Oh I forgot to mention that here in Canada we do call it a Ken Butt for men LOL

I'll settle for a Hotwheels butt. 

(Mattel makes both) 

(I collect them). 

I've heard it called that. 

I still have a long enough anal canal to get one stuck in. Lol.  (sarcasm) 

I didn't think I had either or seeing how it's still all there and open.  A bb or kb. I can still squeeze my spinchter.  I'm kinda glad it's still there.  Feels normal although not in use. Thank goodness.  It put me through pure he double matchsticks. 

Richard. 

Jayda-thanks for sharing your experience with closing the loop. That definitely sounds like a possibility of how they “closed” him. The name of the post op drug is alvimopan. The hospital has to be signed up to be able to acquire/use the med so that will determine if it is even a possible option for you. I know our local hospital did not approve it but it was so many years ago that it was denied. Not sure if it was because of questionable efficacy or cost. 

Mysticobra-I think I still have butt muscle too. This is all so amazing!

On a down note, I think my incision may have become infected. There is one part where they tried to make a belly button that has a deep groove. Not sure if stom spit some poop in there (ewww) during my one change or things got cranky on their own. Debating if I should go to my local emergi-care, call Cleveland, or wait until my post op appt on Friday. Just add it to the list.....hahaha

LORI762 - noooooo!!!!!! I really hope you don’t have an infection. I am definitely not a medical professional, but if you don’t have a fever or extreme pain then the ER can probably be avoided. I just find the ER such a long, draining and usually dirty experience lol save your strength for healing. 

After my last surgery I had a big abscess that really took me by surprise. 

This is probably a stupid question, but have you tried to clean the area? ..... Gently rinse/Squirt the area with a saline solution syringe (the ones they flush your IV with at the hospital) if you have (or whatever you can do gently). Lightly press around the area to see if puss comes out. If the surrounding area is a deep purple/red it is usually a sign of an underlying infection. I will keep thinking....

Good luck!!! 

Hey Lori, sorry to hear about your possible issue.  Do you see a WOCN where you live?  S/he might be able to do a quick look and help you out with a possible infection.

Thanks for your input. So I am feeling fine but yesterday I thought my stom was leaking and here it turns out that my incision is emitting some clear greenish gunk that has an odor. The area to the right of my incision looked redder than usual. I have no established WOCN b/c I have had my stom for the last 4 years and did not need home care this time. The support for ostomate problems locally sucks. It takes weeks/months to get into the dinky little service my local hospital has. I don’t want to let this go in case it is or can be something bigger than it appears. When I was admitted with the NG tube, I saw a bunch of doctors. I am gonna call around and see if any of them can get me in to look at the wound in case I need antibiotics,etc. Knowing me, I won’t be able to wait until I get seen at Cleveland on Friday. 

Jayda-what sort of abscess did you have and what was the treatment? I had a horrible abscess post-op once that required a drain to be in for 2.5 months. I really can’t deal with that again so I am hoping if this is a problem, it is more superficial. 

Thanks!

Oh wow! My abscess definitely wasn’t as bad. One day when I got up to go the washroom a flood of liquidy blood literally exploded out of my abdominal incision line and went everywhere. It was pretty gross. Luckily I was still in the hospital and I had help around but it was the first time any of my incisions had gotten infected so I didn’t know what was happening. Plus with all the pain medication I was still on I didn’t feel any “warning pain”. Once I was discharged homecare came to pack my wound for months and now it’s just a deep scar. At the time my doc said I didn’t need a drain or antibiotics because the infection was draining on its own (and maybe because I was pregnant at the time).  

I really hope someone can help you before Friday!  

I didn't have a loop ileo at the time. I had a j pouch.  I had it for two years. 

I had the loop closed when I had my j pouch hooked up. 

When I had my pouch removed she used where my loop was to put my end ileo. And sewed off my anal canal.  All the muscles... everything is still intack down there. 

Like I said she left it intact in case I want another j pouch later. If I did have a BB or a KB I would never be able to attempt another pouch. 

Richard. 

Hello all!

Sorry for the delay but I wanted to give a quick update. Went out to Cleveland Clinic-and they basically told me to give everything more time. On a good note-my incision is not infected. Yay! They said belly button areas are tough to heal. Couldn’t they just close me up with no “ belly button”? As for my stoma, I am having problems with mucus discharge from the loop stump intestine. Uggghhhh. They are hoping this will decrease. Me too! I am changing my whole appliance every 2-3 days which is annoying. But any of this is still better than the NG tube. Hahaha. As for follow up and meds-they said I need to be followed by GI. 6 months post op, they will test me for active Crohns via an ileoscopy Or CT enterography. The results of this will determine when/if I need to be on meds. Sounds like this test is repeated yearly to stay on top of things. I have an appointment with my local GI peeps who are clueless. I am going to see how they react to this info and decide if I am gonna follow up with them, Cleveland Clinic, or somewhere closer. I am about 1.5 hours away from New York and an hour away from Hershey. Of course, it may all come down to what my insurance will or will not cover. Hope I win the lottery soon😂

I’m happy to hear that there’s no infection!!!!! Not happy about the mucus - I bet that’s what mine has been doing too. LOL I am only getting 1-2 day wear time because of leaks but it doesn’t look like output leak. It looked like a crazy amount of puss but then also a light brown/reddish colour that’s hard to explain. I have been so confused. I bet it’s doing something similar (at least in one spot that’s always been trouble). 

re hospitals - I have tried numerous times to change to somewhere closer to home but they always turn me away. That said, I have only “tried” when I’m in an emergency or urgent situation. They always tell me that my medical history is too complicated and I need to be seen by the hospital where my surgeon is. I have been brought to tears by really really mean ER docs on this topic - As if I need a lecture when I’m in agony. They just put me in an ambulance and send me on my way.   Maybe you will have better luck than me if you go after your post-op follow up and things are more settled. Also, maybe it’s easier to switch docs/hospitals in the US (I’m in Canada). Just a warning that you might have to face some push back on switching hospitals (sometimes I think they are too lazy to learn a new file lol). Fingers crossed because that length of a drive is not only extremely time consuming but also incredibly draining and for things like scopes it seems unnecessary.

On a somewhat separate topic though - I have UC so I don’t really know much about Crohn’s - but can scoping when there’s no likelihood of active disease make your body angry and trigger an inflammatory response leading to a flare? I’ve always wondered this.