UOAA Discussion Board

Just wondering if anyone has ever had similar happen...

42 year old female...

4 years ago I had my very first attack of diverticulitis...I was hospitalized for 12 days on iv antibiotics...then discharged and on antibiotics po for 6 weeks....recovered from that but had trouble for another 2 years and had antibiotics throughout....then another attack with fistula...so very sick....hospitalized again for 18 days on antibiotics through iv....discharged and more antibiotics for 6 weeks....trouble on and off for another year....finally I decided with my doctor it would be in my best interest to remove the infected part of my bowel which shown by a colonoscopy that all diverticuli were close together and shoukd come out fine....this was done because it may prevent an ostomy in future....

April 21 St this year I under went surgery a foot of my bowel came out and I was doing well...April 25 I became deathly ill and contrast dye was given to me and a cat scan was performed.....my surgeon came in and told me my bowels were leaking and I needed another surgery...asap....I listened to my surgeon but couldn't comprehend...I could wrap my brain around what he was telling me... Then it hit me...and I asked him if I needed a pouch...he said yes...I lost it...one of the reasons for this surgery was to prevent this... I cried so much...before I knew it I was prepped and back for another major surgery....over the next couple days I was so sick...I thought I'd die...I went from 140 pounds to 199 from fluids couldn't walk lift my legs etc....throwing up daily...my potassium went low and I had to drink a wretched drink 4 times...a medicine was given to me in my iv to bring down the fluids...the wound itself got infected big time and I wore a therapy vac for weeks got it removed yesterday but still need packing... I was given minerals and lactose in iv for nutrition. I was in the hospital for 31 days....and hadn't eaten for a month...I just couldn't...when released it took me days to get food in...all muscle mass was lost and fluid was on my lungs...

Anyway I hate my ostomy...everything about it...doctor says in a year I can get it reversed I'm afraid the same will happen....but I will try....I'm doing much better now...4 weeks home today and although as I said I hate my ostomy...I'm glad to be alive and with my family...

I know we can't live on should have could have would have.... But if I only had my time back I'd have never had the surgery...unless had no choice...I'm no further ahead infact I'm behind...I have issues with the ostomy...and often cry.. Bit it is what it is and I'm trying to make the best of it for a year...

Allie

Hi Allie,
I am so sorry to hear all of what you have been through, and welcome to the forum. It is completely normal to feel the way you do about having an ostomy. I had a temporary ileo for four months and was glad to see it go, but it allowed my insides to heal so that my next surgery would be successful. A good WOCN can be of assistance in minimizing the problems you might encounter with your ileostomy and help with your adjustment to it.

It is very important for you to get in the best physical condition for your next surgery. I realize that you want to be free of a bag, but don’t rush things. Listen to your surgeon’s advice concerning timing of your next operation. I concur with your thoughts about getting “hooked-up” again and I would go that same route if I were in your position.

Looking down the road, if the reconnection does not work out for you, there are three surgical procedures that avoid the need for an external bag: the j pouch (most frequently done), the BCIR and the k pouch. You can get lots of information about them on the internet. The “J Pouch Group” is an online forum with many posts by people with these procedures. I have a BCIR that I empty 4-5 times a day at my convenience with a small plastic catheter and there is no leakage of gas or stool. It has given me an excellent quality of life and most of the time I am not aware that I have it. But, you are not at that decision point yet. Best of luck to you.
Bill

Welcome to the forum Allie. I'm sorry you have had such a difficult time of it. I understand how you feel as my history is almost the same as yours. A resection, meant to avoid a colectomy, then a complete colectomy. After a couple of years I developed a huge hernia and suffered from repeat obstructions. Unfortunately, this scenario is fairly common. I ask that you not give up hope. There can be an excellent quality of life with an ostomy as well as after an ostomy. This forum can give you lots of very practical information. It will take time to recover and "settle in" with your new ostomy. Use the forum. Yell, scream if you have to. We'll understand. At this point I will add that I'm now 10 months post reconnection. That's right. I've had my total colectomy reconnected. No J pouch. I take a lot of medicine to thicken me up. Eat a lot of rice and potatoes but it works (most of the time ). I tell you this because you should know that this field is always changing. New procedures. New ways of approaching old procedures. Of course not everyone can benefit from this but when your time comes....well, don't give up hope. For now, just treat yourself gently and get stronger. Know that I care....
Doris

Allie:
You have been through the wringer, that's for sure.

I hear you. You hate your ostomy. You want the ostomy to be reversed as soon as it is medically safe to do so.

Be aware that you can find a life with an ostomy - a good quality of life. You can get back to doing the things that you love to do.

Many of us on this forum have permanent ostomies. I have an ostomy due to an unexpected and extensive intestinal perforation. I never saw an ostomy on my life's trajectory. Yet, I have one. In all honestly, I am at peace with my ostomy. I do not mind it in the slightest. Taking care of my ostomy is like brushing my teeth - a daily ritual. Unless I were to tell someone, no one would know that I have an ostomy.

We are here to help you manage your ostomy while it occupies residence on your abdomen. We are here to help you problem solve if/when you experience a leak. We are here to give you a shoulder to cry on. We are here to help you celebrate the many small successes in your healing and recovery. It is a strange, new world with an ostomy. We are here to help you adjust and adapt so that the journey is less onerous.

May your day tomorrow be a bit brighter,
- Karen -

Im Lisa
All I remember about my ordeal is on Labor Day 2015 asking my Aunt ,a nurse if I felt warm. She felt maybe a little but we was watching a parade so warm was expected. We went home right after things wwere over due to me not feeling well. A few days later I guess I fell and my 20 year old son helped me up to couch and I told him I was going to sleep I would be okay. The next thing I remember not feeling well and the need to get to the phone for help called two aunts both nurses. I remember the bounce EMS trip down my drive and thats it. I guess they kept me in local hospital a week which I guess I was talking and eating only had fever with no answers. I still have no recall. I guess they decided to life squad me to larger hospital. I guess thats like the ground life flight team. I still have no recall. I come to one month later very slowly I had been put in a induced coma. Took a while to get things clear and being able to answer cognitive questions. I guess they I was in renal failure and had a septic mega colon so I came to with a iliostomy. They had been teaching my husband all about caring for it but when I came around the decision to go to a nursing home was made. I had to learn to deal with the ilio my wound incision is from diaphragm to pubic and was left open with a wound vac in place. Oxygen all thee time, How to feed my self, how to wash and dress my self and how to use my arms and legs again. It was like being a baby and starting life all over. Things are better now. I now have to make the decision to do reversal or not. It dosn''t help when you have a outstanding mental health history in conjugation with all this. All medications that would work are time release so going through that also.

Allie, you've been through a horrible experience but now you are on the other side. I see from other posts that you are not having leaking or management problems with your ostomy - congratulations! You are fortunate. As others have said, one can have a full and active life with an ostomy. That being said, if reversal makes sense, down the road, when you are healthy and strong, go for it. All the best.

Lisa, your experiences would make 'a strong ox cry'. (I think I just made that expression up) Anyway you have been through so much since last September. You have had to learn everything again as from babyhood. All the best to you too.
TGH