New gal here - with my stoma Stella :)

Hi all.  After searching all over the net for "ileostomy forums" and reading through what seemed like dozens of sites, I have found this one to have the most homey feel and abundance of information.  I hope you will accept me into the group, I am anxious to learn from all of you and hope eventually I will be a source of information as well.

My name is Melissa; I have been married for 10 years and have 2 sons 9 & 6 and I was diagnosed with Crohn's disease in August 2003.  Since that time I have had various stints as an in-patient and I've been on nearly ever medication except methotrexate and cimzia (according to my GI doc).  Since August of 2011 I have been in and out of the hosptial nearly every 4 weeks for flare-ups.  After dealing with the disease for so long and letting it run my life I decided to have surgery.  On December 15 I had a total proctocolectomy with end ileostomy.  Apparently I was quite the stitch in the recovery area and was really cutting it up with all the nurses.  We thought all was going well; I was up walking the evening of surgery and was allowed to begin clear liquids the next morning.  Things quickly changed and on December 21 I was taken back to the OR for a revision of my stoma.  It had somehow gotten itself twisted and I had a major backup of mostly everything I had put in my mouth since the initial surgery.  Everything else looked good "in there" according to my surgeon and her team so we set pace for recovery again and I mentally pushed everything back a week in my mind.  I was discharged on December 27 and spent New Year's Eve at home only to return to the ER on January 1 because I was having what felt like acid reflux - which was one of the symptoms before we revised the stoma. 

They admitted me to the hospital through the ER and I had a CT scan that showed a small abcess around the rectal stump so I had a drain placed overnight that pulled out very little fluid and was not infected.  At this point I get a little confused as to what happens next so I will just say that I went back to the ER where the mesh that was supporting my stoma was removed because it was infected.  I also had my medi-port removed b/c they thought it was infected and had an endoscopy to rule out any abcesses in the upper GI.  I was released home again and made it 6 days.  I was feeling crummy and thought of having my husband take me to the ER but remembered I had a follow up appointment the next day and figured I could make it 'til then.  I showed up at my appt. with a heart rate of 163 and was classified as "anorexic" on my admit paperwork.  I wasn't keeping up with the output of my stoma and had become so dehydrated that my body was literally shutting down.  They admitted me directly from the clinic and started fluids and kept me NPO at first.  Eventually I was put on TPN and a strict calorie count to be sure I was taking in enough calories.  While I was there SOMEHOW the stitches holding together my fascia were snipped basically leaving my entire abdomen wide open (small intestine and all) so BACK to the OR I went so that the surgeon could replace the stitches (I had these internal stitches b/c after the first 2 turns to the OR my outer skin was mush from the in/out of the staples and wouldnt' hold anything).

I started this process back on December 15 at 124 (about 10lbs less than my normal weight).  At my last admission I was 92lbs.  I'm 5'2" - basically I look like I am 12 now.  Sooooo, I am finally home and have been for almost a week now with no complications.  I drove to my dr. appt last week and I have home health care visits 4 days a week to care for the massive abdominal wound - the other days and nights my husband cares for the wound (he is in the medical field in the US Navy).  I do have a perineal wound that is still healing - I had a wound vac on it in the hospital and it was removed before I came home.  The doc says it is healing well and that it is just going to take time and if I would put the wound vac back on it would go a lot quicker.  I hate that thing though, it is so restrictive and I really want to be going back to work part time on March 10 - I dont' wanna drag that thing around.

For now I see the doc every Wednesday and I have a wonderfully fabulous wound/ostomy nurse who has the most unbelievable amount of patience and great sense of humor.  Wow, that was a novel - guess I could have shared my blood type and such hahha.

I am currently in a Hollister pediatric pouch A) because it is more proportionate to my body and B) because it is the best fit with trying to work around the gaping hole in my stomach!  It also doesn't have a starter hole on the wafer so I can place the opening wherever I want which works AWESOME when you are trying to navigate a 10in vertical opening :)

I have so much more to say/ask but I'll start a new post or add on to someone else's instead of making this any longer.

Thanks for having me! 

Hey Melissa....welcome to the forum. My goodness you have had a tough ordeal to contend with. Too bad after coming to the decision to have the surgery things got so complicated with healing and trying to recuperate.

It does sound like things are finally getting on the upswing for you. You do sound like a strong gal and doing well with your overall attitude which is so important.

This is a great place and will become a great resource for you with a great bunch of supportive informative people. Glad you found it to help you out. Hope each day gets better and better for you....{{{Hugs}}}

Melissa, welcome. Glad you found us (glad you chose us)!

There are some parallels to our stories, although you've had a lot more complications since surgery than I have (I've had some, though).

I'll comment on a few things that I thought of while reading your intro -- if you have some more specific questions, definitely ask them, and feel free to also start new threads.

I think in your context "aneroxic" just means that you don't have an appetite or that you're not eating enough. It's not the eating disorder psychological definition. I've had that on my chart at various times.

I think we tried a lot of the same drugs. I took cimzia too, but I'd been told that it almost never works after remicade and humira stop working, so just as well to have skipped it (humira never worked for me either, I got a reasonably good year on remicade).

I also had an abscess after surgery. Mine was in the perineal wound, and so I had my stitches opened up. Something was not right there (they don't know whether it was related to the abscess or not), and my wound never closed. I had to have another surgery in Sept to fix that, and I'm almost fully recovered from that. I did have a wound vac in August and it was pretty uncomfortable, especially in the heat. It didn't help me at all. When they work, though, they can work fast, so you'll have to weigh whether it's worth it or not. Especially if you've been on a lot of prednisone, that wound can take a long time to heal.

I wondered whether you're happy w/your medical team and whether you've been at a teaching hospital at all. They are often better w/complications as they see more cases. Just wondering if a second opinion might be in order....great that you have an excellent nurse, I do too, and it makes such a big difference.

There's another thread going about gaining weight, you might want to take a look at that.

Hang in. I hope your healing picks up and that the worst is behind you.

blueglass said...
Melissa, welcome. Glad you found us (glad you chose us)!

There are some parallels to our stories, although you've had a lot more complications since surgery than I have (I've had some, though).

I'll comment on a few things that I thought of while reading your intro -- if you have some more specific questions, definitely ask them, and feel free to also start new threads.

I think in your context "aneroxic" just means that you don't have an appetite or that you're not eating enough. It's not the eating disorder psychological definition. I've had that on my chart at various times. That makes sense, it was just kind of a shock to the eyes when I read it.

I think we tried a lot of the same drugs. I took cimzia too, but I'd been told that it almost never works after remicade and humira stop working, so just as well to have skipped it (humira never worked for me either, I got a reasonably good year on remicade). I did remicade for almost 3 years before it quit on me and then I went to Humira for nearly 3 years before it quit on me too.  Glad I didn't let the GI pressure me into trying the Cimzia - I was dead set on surgery.

I also had an abscess after surgery. Mine was in the perineal wound, and so I had my stitches opened up. Something was not right there (they don't know whether it was related to the abscess or not), and my wound never closed. I had to have another surgery in Sept to fix that, and I'm almost fully recovered from that. I did have a wound vac in August and it was pretty uncomfortable, especially in the heat. It didn't help me at all. When they work, though, they can work fast, so you'll have to weigh whether it's worth it or not. Especially if you've been on a lot of prednisone, that wound can take a long time to heal. It seems to be progressing - just not super fast and honestly the wound vac didn't really do a dang thing other than irritate me when I had it.  I will do it again if the doc really thinks it will be beneficial but she has a lot of convincing to do.  I haven't been on prednisone for quite some time so that shouldn't be a factor.

I wondered whether you're happy w/your medical team and whether you've been at a teaching hospital at all. They are often better w/complications as they see more cases. Just wondering if a second opinion might be in order....great that you have an excellent nurse, I do too, and it makes such a big difference. I am ecstatic with my team and in fact it is a teaching hospital (military family).  I somehow forgot to mention that I also developed a fistula IN MY ABDOMINAL INCISION after my 2nd trip to the OR.  We tried a suction contraption that failed and the fistula ended up closing/healing on it's own within 24hours - PRAISE GOD, I needed a break.  At that point my surgeon came to me in tears (we have a GREAT relationship) and offered to send me out to someone else but I wouldn't trust anyone else, she was with me from the beginning and I don't want anyone else there at the end!  She does leave for Kuwait at the end of April but we hope that I have made major strides in healing by then and I will transfer to another member of her team who also cared for me while I was inpatient.

There's another thread going about gaining weight, you might want to take a look at that.

Hang in. I hope your healing picks up and that the worst is behind you. Thank you!  I feel certain the worst is behind me and I am so happy to be home with my family.

I wonder if our stoma's are related? Mine is also named Stella, and I got her in September of 2011. She has been wonderful to me, and I am expecting that she and I will be the best of friends for the rest of my life! Welcome to the forum!

Hi! I am new here as well. Youve went through alot, Im sorry to hear about all that. I am looking to meet people who are new to having a bag. you can feel free to email me at [email protected]