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SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/27/2011 11:38 PM (GMT -6)   
Crazy enough, I find myself here. This website is a ridiculously great source of information. It's helped me a lot in figuring out stuff about my new ileostomy.

I never expected this to happen, to end up with one. I was at work one day last month, and out of nowhere I felt sick and left. I went home and took a nap. Woke up in an ice cold sweat. Started throwing up stomach bile like crazy. I blacked out and when I came to, I drove to the local hospital. I was having diahrrea like crazy, going 20 times an hour probably. They had a GI doctor who wasn't very good, and I was put on heavy doses of Flagil & Cipro. This somewhat helped, even though I still had diahrrea and vomiting. I was sent home in four days, still weak and had the symptoms. I suffered at home for two weeks, not able to eat much, horrible diahrrea still, occasional vomiting.
I didn't know what was wrong with me.. this just hit out of nowhere. So I went to Vanderbilt, the doctors were shocked at the CT scans. My colon went to toxic mega and had been for a bit. They were shocked I wasn't in any pain. I did feel really bloated, though.
They tried flagil again, heavy doses. Made me feel miserably worse. My heart rate was raging around 170-180. I didn't really feel this either, but they were freaking out.
They scoped me to see if they could find a blockage or something, but the GI doc stopped it 10 minutes in. I had Pancolitis, bad. very bad. They had to operate immediately.
I came to in an intensive care room, surrounded by surgeons. They told me I was to have a total colectomy. They marked me up for an Ileostomy, I was still half in the bag from the anesthetics from the scope. I was just like.. what is going on?
When they explained my colon was to be removed, i snapped into consciousness, and freaked out. they were about to wheel me to a surgery room, where when I came out, I had no idea how life would go for me, whether i could drink, party, be with friends, drive, live life at all. I was crying and shaking. The patient transport guy looked at me and laughed. He told me I had nothing to worry about. He lifted up his shirt and sure as hell he'd had the surgery too as a 20 year old. He took his time taking me to the surgery room, explaining everything about it. I never got his name, but I owe him so much for comforting me before it.
The surgery went well. I remember barely being awake and clinging to the oxygen mask I had on while they were trying to take it off. It was a funny moment thinking about it now.
Between anesthesia and the pain med pump thing, I was very comfortably out of it for a good while. I was swearing at nurses, etc.
The hospital recovery was slow and daunting. I was in there 2 days before surgery, and then there an additional 12 days. Looking back now It doesn't seem too long. but there it seemed like an eternity, not being able to sleep. nurses poking and prodding every 4 hours on the dot. uncomfortable bed, which broke. Not being able to eat or drink. Thankfully the TPN and PICC line saved me. I wasn't taking in enough protein, so my wound was opening. Luckily it's almost healed up now. I'm hopefully going to be fully released by the GI Doc May 12th.
They said that this was the best colectomy/ileostomy surgery they had ever done. I'm very thankful there haven't been many complications. It's just an adjustment now. I've got a stealth belt coming in the mail tomorrow. I'm learning about adhesive patches, vents, etc.

Mainly, I'm not letting this hold me back at all. I'm planning to a new college in the fall. I'm ready to get out and take life by the horns again. Just two more weeks of being lazy.

I thought i'd share my story with you all. It feels good to explain my situation to people who know what it means. Hopefully someone who is scared about this or new to it will read this and feel somewhat comforted. It is a tough situation, but with determination, I've taken back everything this instant life changing problem caused me. I lost two months, Had to leave school on medical, missed out on so much. But now, I'm taking it all back.

I'm interested to hear how you ended up with an ileostomy. What happened to you? It turned out that I had ulcerative colitis. I had no symptoms.

Thanks.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/28/2011 2:43 AM (GMT -6)   
Welcome, SigmaChi, and thanks for sharing your story! You have a great attitude considering you didn't have any time to think about or plan for surgery. I'm glad that you're doing well. How amazing that the medical transporter was there at just the right moment to ease your fears! :-)

I was diagnosed with Crohn's at age 28. Every doctor that scoped me recommended that I have my colon removed, but I was very stubborn and refused, and then proceeded to suffer for 7 years while trying every medicine and special diet to try to get the disease into remission. Ultimately, nothing worked, and the disease got so bad that I had to have my colon and rectum removed in order to save my life. Looking back, I should have listened to the doctors and trusted that they knew what was best for me, but I was scared to have surgery and avoided it as long as I could.

The day after surgery, I knew that the disease was gone, because the stabbing pain I had felt for years on my left side was gone! turn Much to my surprise, I was out of the hospital in 4 days and was out driving and grocery shopping two weeks later. I felt great and still do!

Surgery was the best solution for me, because I've been disease-free and medicine-free ever since, and that was 5 years ago. I love my ileostomy and feel just as healthy as I did before I ever got sick. I have no limitations and can eat and do whatever I want. Surgery truly gave me my life back, and I'm so grateful to be healthy again.

I'm so glad that you found this website. It's a wonderful, supportive place to meet others who understand what you're going through and a great place to learn helpful tips about life with an ileostomy.

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/28/2011 8:00 AM (GMT -6)   
It is pretty great. I feel retarded better than I did when I went into the hospital. Mainly now, I'm just waiting for the wound where they took it out on my stomach to heal. They used staples and I have a few holes I have to pack with strips.
It was very awkward at first to see giant holes in my stomach and have to fill them up. But it's second nature now. They're almost closed up. I'm just getting cabin fever being stuck at home. My last real check up with my GI is May 12th. So fingers crossed I can get out and get things rolling then!
Thanks for sharing your story. I was very, very nervous about surgery, but it's something I can look back and laugh at now. The guy who transported me helped more than he could ever imagine.
No colon, still rollin'

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 4/28/2011 12:38 PM (GMT -6)   
I was dx with Crohn's at 18 yo and was first on medication but they could never get the disease into remission. After a month long hospital stay at 20yo I was told either you can go home or you can stay and have an ileostomy done. Being that young and after being in hospital for a month I bolted home, I was still no better than when I went in but just needed a break from it all. Well, 3 days later I was on the phone begging for the op, they gave me a date for a week later and I was counting down the days.

The first time after the surgery was amazing, I had no urgent need to dash to the bathroom any more and the pain had gone. I loved it and had already decided before I left the hospital a week later that I would never have it reversed. I found out at my check-up that I wouldn't be able to have it reversed as colon was so badly diseased they were surprised it had lasted as long as it did without perforating. Didn't bother me as it was what I wanted. I had the colon and rectum removed and anus sewn up 7 years later.

Even though I have had ups and downs with the Crohn's and still have flares it is so much better not to have that urgency issue for the bathroom. I have never regretted having it done, I have had it for nearly 20 years and it gave me my life back.

Good luck with all your future plans, if you retain your positive attitude it makes things so much easier.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/28/2011 1:42 PM (GMT -6)   
Wow. I was very thankful that I just had UC. I have heard Chron's flares are horrible. Sorry to hear that you have it.
I have a J-Pouch? Installed down there. I can get it taken down in july, but i'm still on the fence as to whether or not I want to keep the ileo or go to it. I guess time will tell. I love the ostomy now, it's easier and I feel so much better than when I was sick. Being horribly incontinent and going 30-40 times a day from the pancolitis SUCKED. Even if it was for 2 weeks, I was in total misery. But now things are going swell. My appetite is ridiculous. I'm constantly hungry.
I'm a pretty skinny guy, I weighed 128 the day I was at the first hospital. Right after my Colectomy I dropped to 96 lbs. It was scary, I looked like an anorexic. Now i'm up to 119 :) almost to my goal of 128 again. I'm just very thankful that this saved my life.
No colon, still rollin'

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 4/28/2011 8:30 PM (GMT -6)   
I had UC totally under control for 30 years. Came back about 2004. Suffered through all the meds to no avail. I was very sick and anemic. Retired 2006 at 62. I couldn't work. Had colectomy/ileo Nov 2007. Home in 4 days. Three days later I was in pain. Wife call ambulance. I had almost no blood pressure. I had peritonitis. The stitches at the rectum leaked. Problem was too big for my small town hospital. I was transported by helicopter to a hospital in Detroit. Helicopter ride.......$18,600. Major surgery to find and fix leak. Two weeks in intensive care. I was lucky I did not die. I remember after the surgery the surgeon said "we haven't lost anybody yet and you're not going to spoil our record". The peritonitis precipitated Parkinsons Disease. It did not cause PD, it started it. I did not know at the time, but PD was in my future.
 
 
Dan 

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/28/2011 8:41 PM (GMT -6)   
That is sad to hear. Thankful that you made it through. My heart rate was really screwed up when I had mine before and after. It's thumping around 110 now.
And my grandfather suffers from advanced stages of PD and dementia. It's very sad to see. Medical research has only gone so far on it though... so they don't have too good of cures yet.
No colon, still rollin'

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/28/2011 8:41 PM (GMT -6)   
That is sad to hear. Thankful that you made it through. My heart rate was really screwed up when I had mine before and after. It's thumping around 110 now.
And my grandfather suffers from advanced stages of PD and dementia. It's very sad to see. Medical research has only gone so far on it though... so they don't have too good of cures yet.
No colon, still rollin'

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/28/2011 9:34 PM (GMT -6)   
Must have been tough to have to go through so much in an incredibly short time. And to not even know you had UC! You have a very good attitude about it which will make all the difference as you continue to heal and move forward in your life.

I found myself facing surgery fairly quickly too... though nothing like you experienced. I had UC mild to moderately for ten years, but was actually in the most perfect remission I had experienced since diagnosis when the severe flare that hospitalized me hit in a matter of days. I almost faced emergency surgery after being in the hospital for two weeks and getting sicker and sicker, but ended up taking Remicade which stopped my symptoms enough so I could go home. I ended up getting surgery a month later anyway as the Remicade side effects were horrible for me. I was actually excited about surgery by that time, as I was done with being so sick and wanted to get on with my life. And that is exactly what has happened since surgery 5.5 months ago. I feel amazing again!
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/28/2011 10:59 PM (GMT -6)   
It's good to hear that people are doing so well with the ostomy, It improves my mood that much better. I just look at it as something that's going to make life better, not drag ya down. I took my last Antibiotic today, So i'm off pills other than cumidin, I had a clot in a vein under my intestines from losing so much weight. Should be off it after the 12th though. Pretty darn excited for my final check up.
No colon, still rollin'

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/29/2011 6:32 AM (GMT -6)   
Sigma Chi, welcome to the list. As others say, you are doing amazingly well.... don't feel pressured to be that way every day, though. You've been through a lot, and some of the "negative" emotions are often part of the healing too. So, if you get angry or sad or scared or whatever, that doesn't take away from how great you're doing.

My story, shorter version: I was diagnosed with UC in 2004, after several years of thinking I just got diarrhea when I was stressed and it was no big deal. I only had a flex sig at the diagnosis, because my blood pressure was low. When I later had a colonoscopy, they said no, it looked more like Crohn's. My diagnosis has flipped back and forth ever since, and they're still not sure.

I went through most of the drugs. At first I took asacol, which pretty much did nothing, and prednisone when I'd flare. Then I became resistant to the pred, and was hospitalized for 2 and a half weeks. Like blueheron, remicade sprung me from the hospital, but it worked better for me than it did for her. I wasn't all the way in remission, usually had blood in my stool, but I got a pretty good year from remicade, and then it stopped working. Another hospitalization, but this time the IV steroids worked. Tried humira and cimzia, scary drugs that didn't work much. I've also been on others.

Just kept getting worse, but I adapted to it, a strength and a weakness. In November of last year I started getting boils, (mostly) all over my butt, it was awful, they were incredibly painful and hard to dress. Biopsies "confirmed" a cutaneous Crohn's diagnosis, a rare complication. Then my eyes went crazy, incredibly painful and light sensitive, I was wearing sunglasses indoors and still shielding my face. First I got diagnosed with conjunctivitis but it didn't get better, and I went back and it was marginal keratitis, something the opthamologist said he'd never seen in 30 years in someone w/IBD, but that it was probably related, as it's an inflamatory condition.

Then I went in for a routine visit w/my gi doc, and I was feeling awful that day, very low energy. He took my temp, and it was 104.... put me in the hospital again, ten days this time, and that was my most terrifying hospitalization. I was on cimzia, a powerful immunosuppressant, that says it has fatal infections as a possible side effect, and well, that might be what they'd look like. Plus I was so, so sick with the "shake and bake" high fever thing, being really cold and shivering and then a bit later needing ice packs cause I was so hot.

I still resisted surgery. One of the docs gave me a slide show tour of my colonoscopies, showing me how much worse things had been getting. My gi doc said the problem was that you couldn't see your colon.... that if a piano fell on my leg and it was totally mangled, you wouldn't expect that rest and some dietary changes would fix it. The docs were all clear that prednisone was not a long term option, and that otherwise I was either looking at tysabri (which has caused fatal brain infections and only has a 1/3 chance of working anyways) or a clinical trial.

I was jacked up on pred when I got out of the hospital, and after some rest, feeling pretty good. Then I found out that my work had arranged for me to be out until after spring break (I teach), and I'd never missed so much teaching before. I thought that I'd rather keep my job than my colon. Also, I just felt like no way, no more of these horrible drugs. All of a sudden I was very clear that surgery was the way, and I've stayed clear throughout.

I was able to schedule surgery in two weeks, did a very fast taper to get down to 20 mg of prednisone. At this point, my diagnosis was still Crohn's, and my doc recommended proctocolectomy with permanent ileo (take out rectum, anus, colon, and as I later learned, appendix too, it's attached). Surgeon pressed me on whether to leave possibility of a J pouch in the future, but it seemed unlikely, and I just didn't want more surgeries/hospitalizations.

The surgery went well. It was laparoscopic, so my belly wounds healed quickly (just 4 things with maybe 3 stitches in each). I got an abscess in the butt wound a week after I got out of the hospital, another high fever, and another four days in the hospital. In the CT for the abscess, they found a blood clot in my hepatic vein, so I got 6 months of coumadin.

The butt wound is healing very slowly, and that's been hard. My heavy steroid use and being older than you are factors. I see my surgeon next week, wondering how long it needs to stay open and draining.

On the pathology report from my colon, turns out there was no evidence of Crohn's, it looked more like UC. So, I'm back to not knowing what I have.... it would be much better if it were UC.

Even though I'm not fully recovered yet, so many things are so much easier than with IBD.... my days are not ruled by urgency. I have gained weight. My energy is still a bit depleted, but I'm optimistic.

I did see a picture of my colon, and it looked awful, helped confirm my decision to have surgery (although I found out later that the black spots on it were injuries from the surgery itself, they weren't there when it was in me).

I can't really say that I wish I had surgery earlier, but I can see where in the long run, there are advantages to having things work out as they did for you.

Hope things continue to go well for you, and that you get back soon to the things you've missed.

OK, my shorter version isn't that short.....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/29/2011 8:30 AM (GMT -6)   
Thank you for sharing blueglass. How are you managing on the cumadin? I'm curious as to what dosage they have you on and how it's working. It's been a tedious pain for them to get me to the right dosage now. I'm taking 7.5mg a day.
It's the only thing I don't like about this surgery, because my blood is thin, i'm constantly cold. But my INR levels are right at therapudic.
They told me i'd have to be on it for 6 months too, but my home primary care doctor said that if my May 12th appointment goes well, he's going to cut down on it and get rid of it all together. I'm looking forward to this more than the appointment.
No colon, still rollin'

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/29/2011 8:47 AM (GMT -6)   
SigmaChi, I'm getting an INR every week and my coumadin is getting adjusted.... I am starting to add Vitamin K foods to my diet, so the last few INR's have been low. This week I'm taking 7.5 mg on five days and 5 mg on two.

My surgeon left it up to my gi doc whether to treat at all; he consulted with others.... it really might just have been one of those things they find on CT scans that go away by themselves, but he said that if it gets bigger it's a lot harder to treat. Mine is almost certainly from the surgery, as I had a CT scan a few weeks earlier and it wasn't there.

I am supposed to be on it for six months. I asked why this duration, and he said they don't really know for sure.... it's from the research on dvt's, which are blood clots in the legs. Six months seems to be enough to prevent recurrences, and more doesn't seem helpful. They are not planning to do any ultrasounds etc. before the six months because the issue is not only the clot they found, but preventing another one, so even if I were clean, they'd want to keep going. He did say, though, that if I was say at 4 months out and having a lot of side effects, they might reconsider.

Mostly the coumadin is not a big deal.... I did have the worst period ever after the surgery, and I'm not sure what role the coumadin played in that (my INR was really low then, and it could have been other factors). I notice that when I blow my nose, I often have some blood in it. Otherwise, not a big deal. I've been on a lot of drugs before that have to be monitored, so it's a pain, but I'm used to it.... would be great to not have to do it, though. Hope it works for you to get off it.

I tend to run cold, and that's not any worse from the coumadin. I think I'm better because I've put on some weight and am just healthier in general. The weather is also (thankfully) getting warmer, so it's hard to tell.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Serenitee
Regular Member


Date Joined Apr 2011
Total Posts : 463
   Posted 4/30/2011 5:58 PM (GMT -6)   
I just found out yesterday that I have to have an ileostomy. Thanx to all of you for the information that you write. I have been in pain and lived in the bathroom for 45-years. I attempted suicide last year as I couldn't take it anymore. I pray this new journey and path I will be traveling will give me as normal life as possible free of this pain.

I have 7-kids and have missed so many things of theirs do to being ill. They are excited for the surgery. I will admit I am nervous and pray that it all goes well. I have had 2-other kinds of surgery in the past year so I'm not looking to recovering again, however I hope the results are 100% for the better.

Serenitee
God grant me the Serenity 2 accept the things I cannot change, courage 2 change the things I can, and Wisdom to know the difference....Eternal Serenity

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/30/2011 6:22 PM (GMT -6)   
I'm glad to hear my story & the ones from everyone else who posted on here gave you a bit of insight. Don't worry. Surgery kind of sucks at first. You'll be tired and weak and won't want to eat or drink for a while. I probably didn't eat or drink for uhh 4-6 days. I had to get a PICC line and get TPN nutrition. I'd recommend highly that you request it! It boosted me up so quick. Definitely talk to your GI doc about this prior to surgery. What it is, a giant bag, and the picc line is a huge IV they put in your arm. there's no pain or anything. but it gives you all the nutrients & vitamins you need to get back to where you can eat. It'll speed up your recovery. I wish you the best of luck with your ileo. It's going to be a change at first but you'll adapt, and enjoy the fact that you have life back.
No colon, still rollin'

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 5/3/2011 6:03 PM (GMT -6)   
Serenitee

45 YEARS?!?!

Dan
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