Time has to come in making my decision

Hope this all finds you well,

I'm in a bit of a HUGE pickle. Time has come, have to make a decision as to whether or not to reverse my stoma.

The last month, I wasn't feeling well. Shortness of breath, low blood pressure, high pulse, and the last week a huge knot in the middle of my back. Last week, awoke with severe pain under my sternum. I then knew wht it was, knew this day would eventually come. Went to the ER, was admitted, thankfully was a mild case of pancreatitis due to gall stones. Feeling horrible that past month, I was passing a stone/stones. Was hospitalized for 3 days.

My gallstones developed during my colectomy hospitalization...my cr surgeon just told me because I questioned him as to why I didn't have stones before and got them after. He said because I was left with my anastamotic leakage for too long. If you all remember my case, I was neglected postop by an attending general surgeon after my cr surgeon went on vacation. The leakage (approx 5 days) caused a life threatening blood clot by my liver, ileostomy performed, open ab incision due to the high amount of blood thinners, and my cr surgeon had to cut his vacation short to come back and save me. This experience has affected my life, as did his.

As for my gallbladder, it has to come out now. My surgeon, on vacation again, returns this Sunday and surgery has to be immediately scheduled. He informed me that once stones travel, surgery is inevitable. The risks are too high, pancreatitis is life threatening. And better to do it electively, when the gallbladder isn't inflammed. He has to perform a laparotomy, due to my past diverticulitis infections being in that area (ascending colon), there's too much scar tissue there. He said that it won't be easy at all getting it out.

If the gallbladder ISN'T inflamed (my back pain reappeared last few days, so hoping I'm not symptomatic again and gb will hold out until surgery), he can perform ileorectal anastamosis. July 26th is 3 years since my colectomy. Despite everything I endured, I've actually never been happier and healthier. I suffered with constipation all my life, my colon was inert, diverticulosis was diagnosed 8 years ago. Every medical professional has previously dismissed my colonic dysmotility as being 'lack of fiber.' My entire colon had diverticula, every GI and surgeon never had a case similar to mine, but still never looked as to why. I also suffer with esophageal dysphagia.

I would love to be reversed, but my quality of health is most important. I have 2 kids to take care of alone, support system is minimal. Prior to my colectomy, only test was a colonoscopy. No rectal anal manometry, no sitzmarker study. I don't know what to do. If I get reversed, I hope that these 3 years are an indication of good health. My transit time is fine, no stomach emptying issues, etc. But having an underlying problem that has never been solved, anything could happen. My surgeon said that he thinks I would have a good outcome, but that could also be wishful thinking. And if not, he could reverse me back. He cried along with me last week, he knows how difficult and scary this is for me.

Thank you for reading and thank you for the limitless support throughout the years. I have upcoming doctor visits, lots of questions to ask. Most will be matter of opinion but will keep you all informed!

Wow. So sorry all this has fallen on you. I would suggest reading up on the recovery and adjustment period involved in each option. Then, weigh those against your situation and personal idea of a quality life. I personally opted to have an end ileostomy instead of a pouch to just get back to life faster :)
I too have a 4 year old and very small support system in many ways.

Hi Windy, I'm here too. I canimagine how you feel about the gall bladder having to come out. Another operation, if it were me I'd be between screaming in exasperation and knowing in my heart I can handle it because I already have handled it three times. You know what I mean. I have friends who had their gall bladder out - life afterwards needs maybe one degree more of adjustment than getting your appendix out (not so awful, one woman complained of D for a little while.)
With the anastomosis I don't know enough about your situation. I actually only know a lot about my own situation and don't like to talk when I haven't got much of a clue. From what I understand, you had colonic inertia but never got a proper explanation for it that was satsifying or conclusive. Now the colon is gone: I would assume that the problem is therefore also gone, but is there some other possibility that the problem that caused your colonic inertia would interfere with proper functioning of a reversal? Could you quickly get expert advice from say, two more GI's or surgeons about what you actually need to take into consideration here? Or if there really is something that could have caused the inertia that could give you problems after a reversal? If there is something, then maybe you could have explored if that was your problem. If there isn't anything specific that wasn't tested for that could cause roblems, then you have as much reason to expect a good outcome as anyone else.
Main thing: yes, make a date for the gall bladder, but in the meantime, get all the reliable information and knowledge you need, that's the only way you can base a decision this monumental.
xxx

Windy,
Yikes, so sorry to hear this. I check in once and awhile and I was assuming all was well with you. Just an idea would it be possible to get the rectum checked for function like anorectal manometry etc. Did you have any pelvic floor issues back in the very beginning in addition to the colon transit issue or was it just the colon.

Ugh. you must feel awful. Try and see if any testing needs to be done prior to the rehook. That may help you decide.

I feel for you. Best wishes. Sincerely, Rosemary

you've been through a lot. do you mean the plan is to have the gall removed and reversal all in one procedure? i assume you still have your rectum? how much of it is left? i highly recommend you get a pelvic floor specialist to evaluate your chances of a having good outcome with reversal. you probably never had defecography either. i think it is very important to involve a pelvic floor specialist before deciding. over here, in israel, we have only one dr who specializes in the pelvic floor. but he's one of the best world wide. he really knows his stuff. can you ask your dr to reffer you to a consult with a specialist?

sending you hugs and wishing you best of luck!

Hello all,

Thank each one of you for your enlightened responses.

@ByeByeUC....how is your husband?

@MusicMaker...we think alike because of the personal challanges that are so subjective. I hope your feeling better!

@B'Dereh & 2bColonFree & LinCee....really, thank you for your advise!

@EquestrianMom....thanks for your thoughts. My kids are 9&11, much older than they were at 6&8 when I had my colectomy. Most chores they can do themselves, it's the driving and shopping. I will probably hire someone for awhile if needed.

@Rosemary....thanks for your concerns. I hope there is a plan for treatment for you!

As for as the update with me... I had seen my primary, comentating that I'm too complex. To find out case study info from the surgeon and go from there. Quite biased, but she said if it were her, she'd have her stoma reversed."don't know unless you try." I then spoke with my GI, kindof a complacent man despite the fact he is a motility specialist at a major teaching hospital. I mentioned my reservations and he said that if tests are performed now, they will not predict the outcome. That the biggest indication/reflection is that I've been doing very well these past 3 years.

I see my surgeon Monday. He said he can just remove the gallbladder and wait on the anastamosis. I told him I'd like to discuss the option of reversal. I told him I need to be certain that it can/can't be successful.

My case is quite different. I've had a slow bowel since childhood. 2-5 bm's a month. At 32, I was hospitalized for diverticulitis. OK for 3 years, then the infections reoccurred. My entire colon had diverticula. Diverticula is produced by increased muscle thickening thus producing increased density of nerve tissue. My colon would never move. My pelvic floor and spincter, though never tested, have never been an issue. When colectomy was performed, my surgeon attached my rectum to my ileum. He said that it looked as if my colon had some tissue disease because of it's horrific presentation. Pathology report didn't state anything alarming other than diverticulosis. My first bm, it disconnected. Surgeon used both staples and sutures and it still disconnected. There is definitely something more than just limited to my colon.

So when I see him Monday, I will ask him what connective tissue disease does he think I have and how degenerative will this be? Is it the rectum, small, why didn't the anastamosis work the first time.....how can I take that chance again? He said that he would like to discuss several options, and some new procedure. He will also scope my rectum.

Maybe once answers and a plan is devised, will I then make the go ahead for either option. It will be the week after next. Will keep you all informed!!!

Windy, you explained that really well so that I (five year old at following directions and things like that) could understand. Yes, I see you need to have more consultation and information before you can make a decision. I really hope you do not have any kind of connective tissue disorder. If the rectum is the problem, well, lots of us here don't have ours and more. A j-pouch might be a resolution for you. It is good to read that the doctor is being so positive with you, and letting you know there are several reversal options including new ones. Top. Please post here about it. People are thinking about you.

Update-

I had surgery August 7th. I had alot to think about, alot to discuss with my surgeon. Sorry I haven't been posting!

A week before surgery, had rectal scope. Because it's been 3 years since my colectomy, it was what to be expected. I have diffuse proctitis, inflammation of the rectum. Inflammation would subside with time after the reversal. Since the surgeon didn't do my ileostomy, he was also pleased to see that I do have enough rectum in order to perform the reversal.

He then told me my options:

1-to remove the gallbladder,

2-remove the gallbladder and to do a diversion with a loop ileostomy and go back a month later for the takedown. He would go 5ft up into the ileum, make the loop, and connect the end to the rectum. The anastomosis would either be handsewn, or with a devise that has a high success rate but might not be used too often. It is an anastomotic ring. He knows the developers of this from the Mayo Clinic Fl. It connects the tissue and the metal conforms as it heals. It expels after healing during a bowel movement, but in my case, he's go in after a couple of weeks and pull it out, as it is just siting in the rectum. He also showed me colonoscopy pictures of his patients that he's used this with, and the connective tissue is remarkable. As is the ring itself. No strictures, nothing! And because I had a leakage that put me in this predicament, this would be the safest route. And in case the connective tissue does leak, it would heal on it's own because it's not hooked up. Yes 2 surgeries, but possibly easier recovery time after each.

3-remove the gallbladder & do the IRA. The recovery time, if successful, was just frightening me. Gosh, to do it all at once, didn't know.

After having more than a week to decide, it was very emotional. I felt things I haven't felt since my colectomy. The fear, the unknown, having multiple surgeries, it wasn't easy.

The day before surgery, I told him just to remove my gallbladder. Also, he and I were concerned regarding all my adhesions. I had way to many diverticulitis infections that caused alot of adhesions prior to my colectomy, then add on my ileostomy surgery. So, IRA might not be successful because I could be frozen, especially in my pelvic area. He said too that 3 years ago, after my ileostomy surgery and he came back from vacation, he tried to put 2 drains in and it wasn't easy.

So, gallbladder removal surgery was August 7th. And it was very successful! I was opened up 2" midline under the sternum, above my existing midline ab incision. He assessed my adhesions, and said that they are soft and whenever I'm ready to move forward with an IRA, he will be there. I was up and walking 2 hours after I got to my room, already giving a stink the next day that I wanted to go home. Was released the following day. Didn't feel top when I was released, couldn't urinate properly. Thought would go away on it's own. Next day, surgeon called, prescribed Cipro for 6 days and it cleared up. Incisional pain got better. Being a 2" midline, it was pulled to the right to get the gallbladder out. Hurt for couple weeks. Compared to the past, this surgery was a piece of cake. And emotionally, maybe what I needed in order to instill hope and faith again that was lost for a long, long time.

Thank you for reading and hope everyone is well!

Post Edited (windy city) : 8/28/2013 11:46:34 AM (GMT-6)