Iliostomy reveersal story

Hello, I had my bag taken away on the 1st of Aug. 2012 and got out of the hospital on the 6th. Everything went well. If you read "MY STORY" you will see that everything that could have happen when they found the crohns did and it was a very bad story. BUT, this one is GREAT. I had the bag for about 9 months and was realy scaried to have the reversal but my Dr. is the best in Calif. I've been told and he said that I will be happy if I have it done. Well it's now day15, I'm at home and for the most part I feel good. I started out with 15 BMs a day but only for the first day and then it went down to 8 now it is around 4-6 a day, some gas. What I LOVE the most is that I can now slep for a long time at night without getting up to dump my bag. And it feels so good to be without it. I heard so mant bad storys about having the reversal but I looked at it this way, If someone ha a good experiance the chance of coming back to make a post to tel their good story would not happen much because they were getting on with life. If the reversal was really god with no complacations why would they come back to the forum, not saying that all think that way but its something to think about, Well I had a great experiance so far and I'm so glad that I did it. It has changed my hole out look on life, I hated that bag and now I feel free, I'm in remission and ready to get on with life. It's been less than 3 weeks and can't wait till my scar is compleetly healed, I have some pain there because the last Dr. that did the last two operations, and he having to change Insurance weeks after my 2nd operation left a very nasty scar and this new Dr. really had his work cut out for him and he did a great job cleaning up the old scar. And I mean it was bad. They tryed to do a open wound heal and it didn't work at all. I had a hole about 2" round and 1/4" deep that still was not healled . So far so Good. And I am so happy and thank God so much for this good operation. I'll keep you up to date.

Well it's been a few days now and I have been expericing differant things, over the weeked I had constapation for about 3 days going only 1 time a day and had to use stool soffener and a fleat enama to get any movement. Sunday night I did have a good size BM that was formed and made me feel better, today I have had a lot of gas and 3 BMs some "D" and some formed, a mixed bag. The one thing that is very painful is my scar. When I had my 2nd operation in Nov. when I went septic 7 days after my first emer. small bowel resection they tryed to do a open wound heal and used a wound Vac, but my pention provider changed my insurance from Kaiser to United Healthcare and they took the wound Vac away in the 1st of Jan and Untited didn't even contact me until the 23rd of Jan even though I called them in Dec. when I found out my insurance was going to change. They said they couldn't even setup anything to take over on Jan 1st until the 1st. I was mad. SOOOOO my wound did not heal very wel at all. It lookede nasty and took about 6 months to heal and there was a hole in the middle of it about 1 1/2" rounf and 1/4" deep. My new surgeron said that he would do the best he could do and he did a good job as far as the looks of my new scar, BUT it hearts like hell. I don't know if he cut out most of the old scar tissue or what, we haven't had a chance to talk about it. I was just happy that it looked alot better. When I'm setting down it does not heart to much but when I stand up or do anything it hearts bad. But I think I have to look at it this way. It's less than 3 weeks old and still hurts when I tuch it but it seems to getting better day bu day. But I have a BIG bump right in the center of my tummy and I think it is all scar tissue. At first I was happy I did the reversal but now I'm starting to think about it, I don't know. I want to keep my head up and wait for this thing to heal but sometimes it's hard when there is something new going on everyday. Can anyone give me some news about what they went through with there reversal. I still think that it was the right thing to do. Everything started out god but now I don't know what is going to hapen day after day. I don't like that. I'm getting depressed over the whole thing. 10 months ago all I needed was my apendix taken out and now 3 operations latter I have a tummy that hearts like hell, diarrhea some days and constapation on other days. I just want to go fishing without hearting. At least I can sleep at night now without getting up to empty my bag but then again, I could eat ANYTHING AND AS MUCH AS I WANTED and I felt good all the time. I just hated that bag. I guess its a "O poor me day today, thats not like me" cheer me up please. I need a Beer, but can't have one, now that sucks.
Pops

I've never had a bag so obviously no reversal. I think really it will just take more time for your body to get used to what its supposed to be doing. No one likes the unknown, especially when it comes to your health but many people have had success with their reversal. The amount of time for recovery really just depends on the person.

Is the scar red or hot to the touch? My guess would be that not only are you dealing with the pain of scar tissue but also your nerve endings trying to fire and reconnect. So sometimes you may feel the pain of misfires or "phantom pain." My resection scar has it and I usually get the pain in the area that's completely numb. Even years after my surgery sometimes the scar would start to get red and puffy and would hurt and itch even though there's no feeling in that area. It always went away on its own. It doesn't happen as often anymore but my guess is its still the nerves trying to reconnect. Its just the body trying to repair itself. Does the pain in your scar come and go similar to that or has it always gotten worse? Would hate for you to be dealing with an abscess or anything like that.

Thanks, I think your right on the money about my scar pain. I also have a area that is num and that area is painful. the pain in my scar comes and goes. when I lay down or set, setting way back like in a recliner the pain is not as bad. I have to keep in mind that I'm only 3 weeks post-op, but I tell you even if mt T shirt comes in contact with my scar anywhere along the 17", yes 17"long I feel pain. Forget about where my pants hits the scar, pain all the time. I have 1 pair of PJ's that are very loose and they don't cause to much pain. So I have them on when I'm home, but I'm retired so I don't have to go anywhere but thats not good so I go out each day to a gym I belone to but just set and talk to some of the old guys that don't do much eather. I'm going to start doing the tread mill next week and my Dr. said I can start liffting again after 30days. I think he is full of you know what. How can I lift that soon with a scar like this. There is one small area on my scar that is about 1/4 long that is a bit RED and just a little painful. After I got my stapples uot I was pulling some of the extra glue the Dr. used, man he put alt of that shit on me, anyway when I was pulling some of it off, not from the scar but around it in the stapple holes and what not a piece of the glue from my scar came out of that noe somewhat red area now and it dripped just a few drops of blood so I put a starel stripover it and it stopped. I don't think it is infected right now. The last operation I had a REAL BAD infection so I know what to look for. Will keep a eye on it and call the Dr. if it gets worse. The thing is, my whole scar hearts and I'm wondering how long it will take to heal and stop hearting. I do have to say, before this op. my scar was a real mess, I meen it was so bad. They tryed to use a wound vac and it left a hole like I said in my other post. This Dr. did very well as far a s looks go, I just wonder if he left some of the old scar under the new one. I'll ask.
Now about the POO POO, keeps changing everyday, some days I have 5 BM's and others 1 with the help od MOM and stool soffener. I'm finding out that walking and drinking alot of water helps. I have a spine issue and take 4 Norco a day for that so I'm only taking 4 1/2 to 5 now so I'm not taking much at all for pain for this operation. I don't want to have to tapper down from 6 or 8, thats not fun. I'd rather just stay where I'm at and deal with the pain.
Thanks for talkn to me about this, I think/hope your right about things getting better, I just hope it doesn't take 4-5-6 months. Since last Nov. when they did my 1st emery. bowel resection all I have done is set around, thats not ME. I might be 61 years old but I was very, very active before Nove 2011. went fishing in my boat(s) 5 days a week, had a BIG vegy garden and was always doing something. I hope and pray This recovery goes by quick so I can get on with life. I gets real depressing sometimes.
Pops

Dunno how long it will take but I'm sure you'll get back into the swing of things soon. Even if it did take up to 6 months (which I doubt) you'll still gradually feel better each day and will be able to do more and more as time passes. You know your limits so do what you feel comfortable doing. Take advantage of the times where you feel well. Keep us posted!

Hi Crabby, thanks for the encouraging words. Today is a much better day. I forgot to take the stool soffener lastnight when I went to bed so when I woke up I was in pain BAD, GAS that would not come out but after taking a valuim and a Norco and laying back down the pain started to go away. I also took 2 Fleat enamas just to clear out everything. (Think I over done???? I do, but I wanted a clean start for the day. lol) Anyway had pancakes for Brek. a turkey buger for lunch and I started taking fibber (Metamucia) today and it has helped. I've had BM's today without much problum, but I can say that something is giving me gas BIG TIME. I'd ratter have gas any day than no movement.
As you said , I need to look at this not in the moment but how mch better I feel than1 or 2 weeks ago. Hell, just 3 weeks ago I had that dam "BAG" and I hated it so much, but I had NO other problums with anything at all. I knew that when I lost my bag my eating habbits would have to change. I was eating over 3,000 cal. a day with the bag because last Dec. I was around 121lbs at 5'10" (SKINNY) before I had my operation on Aug 1st I was 164lbs and a week latter I was 170. I'm now around 163lbs and I have not been eating much beause of not many BM's but today after all my cleaning out (OO I forgot I also took 3 stoo softeners this AM also) I decided to eat 3 to 4 meals no mater how I feel and let things happen. My 2 operations last Nov. really has/had me on the defence meening I was scaried that I might go septic again or something bad will happen. I ned to take the road that says, just live life, eat right and don't worry about things. If they are going to happen there is nothing I can do about it. I just need to do my part and eat right and get off my ass and do things. With that said. The striped bass fishing run will start soon if it hasn't already. SOOOOOO I'm going to make myself a deal and promis I will go out on my boat before the end of the month. If I do that 1 time I know I will be on the river Mon-Fri. every week till the run is over around the end of Nov.
I see that you were only 9 years old when you were DX with CD and had a resection, man I don't know how you lived so possative, and you do. If my math is correct you are in your 20's and in remmision. I'm so glad for you. My wife was DX with Colitis and had her colon removered at age 24 and got a J pouch, that was wonderful for 20+ years but noe she has a per. iliostomy and she is 57 years old and healthy as all get out. I knew that something was wrong with me when I was about 45-50, I had diareea all the time but the Dr. just said it was IBS, but when I retired I lost 20lbs in about 6 months and they looked up my bum and said I needed my apendix removed and when they went in to do that they found the crohns, bummer. It's funny that the CT didn't show the crohns and the surgeon said that it was a big mess in there, he could do nothing but do a small bowel resection (I was at 140lbs and really sick) so it was no suprize that I went septic 7 days later and was in the hospital for about 2 weeks again and lost another 20lbs. Getting this reversal I felt that I had a chance to get my retirement back and get on with what I worked for all my life, HAVING FUN every day and doing what ever when ever I wanted to. Looks like I might get that chance with some minor restrictions if all goes well.
Once again, thank you for your kind words and I'll keep you up to date,
Pops

I was diagnosed 21 years ago when I was 9. That makes me 30 now.

Is the pain still that bad where you need the Norcos? I know pain killers can harden the stool hence why they suggest you drink a lot of water while taking them. Wondering if you'll ever be able to switch to regular Tylenol for pain and avoid that issue (so you don't have to keep using the stool softeners) plus you want to avoid addiction as well.

You mentioned a lot of gas, have you tried taking probiotics (with a high amount of good bacteria, you can get the Trader Joe's brand if you have one near by or any health food store or online). Having an increase of good bacteria should help get rid of some of the bad bacteria and in turn help reduce the gas. Dunno how long it takes to help but its a start if you aren't doing that already. Resection sites can cause bacteria overgrowth which causes gas and sometimes mucus. I would take them but everything starts to get expensive after a while.

Hi Crabby, The pain from this operation is getting better but I have been taking Norco, 4 a day for over 5 years because of very bad spine issues. I have 4 really bad vertabras that are just flat worn out and they say that the risk of operation on them DO NOT out weigh the benifit so I control the pain with Norco. Yes I am addicted to them because of 5 years of use. BUT the pain management Dr. keeps trying to get me to use oxy because the Norco does not work as well as they did. At one time I was on 6-8 a day but got sick of being tired so I cut back to 4 and took some classes on medatation and mind over madder and just live with the pain using only 4 Norco. I have pretty bad days sometimes but I don't let it stop me. A person can over come pain with there mind but I need help with the breah-through pain, like in the morning or during winter, I can't stand the cold. I don't like taking drugs but if I keep it like it is now I'm doing well and have found a balance that is working for me. As far as the scar/operation pain goes, I only use "AS NEEDED" Norco for break-through pain, not more than 1 or 2 a day and will return back to 4 a day when all is healed. Really I've been thinking of tappering down farther off of the Norco until I find the spot that the pain changes my quality of life downward and move up the doseage just to where I find the true "NEW" break-through Norco amount. I DO NOT want to take any drugs stronger than Norco like oxy or anything in that class of drugs. After all I've been through over the last 9 months I got a feeling that I can get by with less. I was going to the gym from April till Aug 1st and my trainer did help me with things that helped the pain. We'll see.
Thanks for the info about probiotics, my wife is going to get some from Trader Joe's and we will see.
I talked to my surgeon today and told him that I think I have the start of a small infection starting on my incision, he said to come in around 10am so he can look at it. Its small, about the size of a dime, red looking and getting bigger. I'm glad he wants to see it, in Nov. I had a nasty infection and my wound took months to heal, over 6 months.
Well, getting late, so Ill let you know. I just saw that you are also from California. If you like to go fishing the stripe bass run is just getting started and will be going on for about 3-4 months. I do very well and have 2 boats. I live less than a mile from the Sacramento River where they are. I live in Antioch , Ca 94509. Love to take you out if you dig that kinda stuff.
Pops

Glad you're getting that spot looked at. Infections suck, I know although mine didn't take 6 months, just over a month and a half or so. Smaller scar incision too so that may be why.

I understand about not wanting to go stronger. My uncle has a bad back too (bulging disk and one area that's bone on bone) and he takes a lot of pain killers. He's been battling addiction for a few years now and started taking Oxycontin almost a year ago. Those pills and patches he uses have made him practically a vegetable and hallucinate. Hope I wont have to deal with that in the future since I have arthritis in my back.

I haven't gone fishing in a long time but love doing it. I've fished at lakes and off the pier before but never on a boat. Don't have a fishing license though so I'm kinda bound to the pier.

Thanks for sharing your reversal story Jim Pops.
I'm scared of going back - so keen to read about your progress.
Reversals seem to vary so much.
And love reading about your fishing too. I hope you can resume your retirement soon.

Hiya Jim!!! I am sorry, I didnt see this thread. My computer has died!

Can I ask when you are going back for your follow up appt with the surgeon?

When I think back to my emergency open surgery, I was in pain for at least a month with it. I also got a staph infection. Which set me back a bit with recovery. You need to keep on top of things and make sure you keep your Dr informed of everything. Keep a diary of everything so you remember. (I always forget when I'm sitting in front of a Dr!)

I think from everything I've heard about reversals (quite a bit) your lack of consistancy in stools is normal, and can take up to 6 months to normalize. Also the fact that you have crohn's and arent on meds for it isnt helping perhaps. What does the GI have to say about all this?

Hoping that each day brings you more health Jim!!!

If anyone wants to go fishing where I live, Antioch , Ca 94509, the striped bass will be running from around now till Nov. When I find them I'm on them for 2 months or so.
Hi Terrienut, I haven't heard from you in a while.
Well, I went to the Dr. today and he said that he doesn't think I have a infection but I had floud under my scar because of all the underminding he had to do because of the nasty scar he was trying to repair, Anyway, right in the office he gave me a local and cut a slice about 3/4" long right on the org. insision and out can about 50ml of fluod that he said was something I didn't understand or remmber what he called it. He packed the site with 1/4 wiching, about 1ft of it witch is underminded about 3-4cm all around it and told me to repack it the same way each day and to come back to see him in 10 days. I repacked my wound from the first operation for over 5 months after it got infected when the wound care nurse was doing it. MAN I HATE DOING THIS. I'm no Dr. or nurse. BUT I was at a meeting tonight (a support group for people with all kinds of illnesses ) and after I talked at the meeting saying that how much I HATE DOING THE PACKING and guy came up to me and said he was a wound care nurse and was willing to get me the items needed and to help me with watching over it with me. That made me so happy. I could get home wound care or go to one but that cost me about $60 a pop. This guy (Donald) sems to be really nice and we tex back and forth tonight about what I need to take care of my wound. He said he will get whatever I need and don't have.
I have a appt mid. Sept. with my new GI Dr. Remmber I had to get ALL new Dr's when my pention provider changed my insurance from Kaiser to Unithed Health Care with a BIG deductibale, hate it.
The Dr. did say today that over time everything will get better. I sure hope so.
Thank you all for all your support.
Pops.
PS: at this point I'm still glad that I got the reversal, although I have a long way to go with my NEW wound and that my stool is different each day. But I got some tips from my Dr. today to eat 6 small meals NOT 3 reg. meals. I just have a hard time with the gas that I didn't have with the bag and sometimes I have a hard time going BM sometimes but I think thats from eating to much at one sitting. well see

Good luck with the new eating habits. Its really not a bad way to go. Make sure you have protein each time so you will feel fuller longer and have the energy you need.

That's nice of that guy to offer to help with the wound packing. I know I wouldn't have been able to do as good of a job than my mom when she did it for me. Hard to see what needs to go where not to mention the pain of the packing. I think I wouldn't have packed it well enough cause it would hurt too much and I'd probably quit too soon.

well, I've only been eating 5-6 meals (small ones like half a sandwitch) for 1 1/2 days and it has made a big differance. only had 1 BM today but it was a good one and had a comfortable amount of gas. I like it. One other good thing. since I have paid ALL of my deductiable AND ALL of my out of pocket expence for this year I called my Dr. and told him that I did not feel comfortable changing the packng on my wound and ask if he would order home nurse care on a daily basis till it was healed and he did. They contacted my insurance and got the ok and it will not cost me anything and they will come tomorrow to start doing it. I paid over $12K this year so I say why not let them pay for this, they cover 125 visits a year and if I met my out of pocket it cost me nothing. I LOVE IT.
Feeling good tonight, I hope is keeps going throughout the weeked.
Pops