Advice for After Colon Resection?

[Gillian]

Janae,

I didn't have a fistula after the op but I did develop a leak (small hole they said) in the anastomosis. I developed a nasty infection from all the faeces that had leaked out and had to have the wound reopened to allow all the guck to drain and be cleaned out. I was terrified because they gave me the same kind of options that you have been given. I could have gone straight back down to the operating theatre and had a colostomy fitted - or just treat the infection and wait to see if the hole closed up on its own. I chose to wait (in the hospital under observation) and LO!... a contrast xray 10 days later showed that it had completely healed itself.

Don't get too downhearted about it all - you WILL get over this. It may seem to be going on forever sometimes and you will feel down and exhausted -but even if you have to have more surgery, it is not the end of the world...it's a bummer and not fair, but you will cope and get better- honestly.

I find that having a good cry and rage against fate helps to rid myself of the 'poor me' feeling and set me up for whatever comes next. All the best x

[Gillian]

applecake - I have been suffering bowel obstructions (kinks)every few months since my last op in August last year. They are caused by adhesions and I have been told that there is not a lot that can be done as surgery to remove the adhesions would probably result in other adhesions forming.

When it happens, it starts like bad indigestion and then my abdomen seems to go into regular waves of cramping until the pain makes me feel as if something is going to burst/give way - and I vomit copious amounts of green bile, which starts to turn dark brown after a while. My stomach sounds like a still.

So far,the treatment has been hospital with IV fluids and pain relief for about 4 days -it has always 'unkinked' itself (my doctor says that it is very rare for surgery to be required for this kind of obstruction).

I think it is turning over in bed awkwardly that causes it ( I always get a sharp, tearing pain when I do) so have been trying to remember to sit up before I turn over now and it seems to be working (fingers crossed).

My abdomen has felt really hard and stiff since the op so recently I have been massaging it regularly -it does seem to be getting a bit better -

http://www.youtube.com/watch...

[applecake]

Janae-
What did the specialist suggest today? I wanted to point you toward a site called " ostomyland.org ". There are several people on there who've dealt with fistulas and they have a special section for information on fistulas. It's a wonderful, compassionate and very support group of people -- truly. Some people go there just to find out information about ostomies or the fact that they might get one. You would be able to chat with other people who have dealt with vaginal fistulas and how they've handled their care.

Gillian-
Thank you so much for the information! I think that must be what it was; I don't know. I felt like I was about to vomit at the time, but I didn't. When it happened I was driving, but I'd shoveled down a lot of high fiber just before.

I still haven't heard from the doc about the x-ray. You'd think I would have by now, but oh well. Since last Weds I've been low energy and still fighting that uti feeling, but less and less. I feel better and would rather skip the antibiotics. But I'm still waiting to hear if she wants me to go on cipro/flagyl. She didn't test my white blood cell count, though, which seems a bit odd. Shouldn't I have an elevated WBC count to go on the antibiotics?

I dread the though of it happening every few months. It's terribly painful! It felt like I was rupturing again. I'm sorry you've been experiencing it so frequently. I guess i'm full of adhesions....gosh. And I'll have more after my next surgery in December to take down the colostomy. Glad to be feeling better though. Many many many bowls of miso soup later.:-) xoxoxo

[applecake]

TT:
Thank you for the encouragement. Even though it's hard to admit, I have been getting down this past week over this whole thing. My family (sis, bros, their kids & dad & family friends) go on an annual trip to the mountains over Labor Day weekend and the following and it involves a 5.5 hr car ride (I am single so I would be driving myself) and the place is remote - no cell access, etc. This week I decided not to go, just because I'm scared that I could have a kink or suffer some kind of obstruction and have to be helicoptered out. I struggle with feeling like I'm letting it get to me, and feeling that I'm just being smart and playing it safe. It's hard to admit that I have these issues and have to be so careful at 43.

I love the fact that you walk 5 miles a day. On the Sunday before the 'kinky" episode I went on a 9-mile run (colostomy and all!) and was feeling great. But I haven't gone running since then. Hopefully I can get back to it soon. I'm really with you on the 'never give up' mantra. Thanks so much for reminding me. it's when you're feeling down and beaten that those mantras are the most important.

Thank you again. It helps to know you're there.
xoxoxo

[WNYLady]

Hello everyone! TT is right, acknowledge all we are going through and/or have been through and then stay as positive as you can AND find a good dr or surgeon. My surgeon finally came through for me today! As many of you know, I was having panic attacks as I faced returning to my job next Tuesday because like many of you, 9 weeks tomorrow and I still have the pain and cramping, the bile coming up if I eat just a little too much, the irregular, frequent and urgent movements and fatigue. I talked at length today with my surgeon and he was empathetic and told me to take what time I needed and he would support me! Of course he also wants me to have a Barium Enema to rule out a stricture at the site where he reconnected everything. My 3rd bowel prep since May! UGH! In any case, he said if it is not a stricture than I can count on 6-9 months of this before I am back to normal. He said these post-op issues typically do not happen to the extent I have experienced but it is not something he has not seen before. He did tell me I have his support. So finally, I am feeling like someone finally heard me. YEAH! So hang in there everyone! Thanks again for sharing your stories and suggestions!

[Janae]

bm's some and wearing a tampon to keep pad from irritating me more. All of these suggestions has really helped me....except for citrucel...not tried that yet but did take 1/2 of immodium yesterday and am not as messy this morning.
TRYING TO BE BRAVE AND HANG IN THEThanks guys for your encouraging attitude. I needed to hear this morning that I CAN DO THIS!! I saw the fistula surgeon at Duke Hospital (2 1/2 hrs from my home) suppose to be one of the best hospitals/physicians in the country... and he found my fisutla after a very painful and embarassing exam...(feces was everywhere). He said it was about a cm and he wanted me to see a colo rectal surgeon in the area. So she was able to see me that pm which was great so I didn't have to make another trip. The fistula Dr said she would be the one he would send his wife, mom or sister to as she and her associate was the best. I was very impressed with her. She examined me and said I would definately need more surgery but she wanted me to be at least 6 wks post op which will be next WEd and she would be out of town next WED so surgery is scheduled for Sept 12..exactly 7 weeks post op. She said that usually she could do this in one surgery and felt like she could with me. I have strong bowel muscles and my outside incision has healed remarkable well...she was very impressed how much it had healed and she said if the inside had healed that much that it would help things. But IF I had too much inflamation once she and her partner goes in then it will be a colostomy and reversal in 3 mos. So here we go again. She is going to remove some of my rectum, put some fat from the colon in between the colon and vaginal to prevent another fistula and put a couple of stitches in fisutla If fistula Dr didn't want to completely repair it . She said once the colon is fixed the vaginal would heal itself. She also gave me some wonderful creme for all my rawness called calmoseptine ointment and I already feel so much better today. She also recommended adding citrucel to bulk up my RE...JUST DREAD GOING THRU THIS SURGERY AGAIN BUT I KNOW I AM NOT THE ONLY ONE HAVING TO DO THIS. THANKS GUYS.

[Janae]

My post posted funky..don't know why but too much to redo...maybe you can get the jest of it..sorry.

[Bonnie]

A good doctor makes all the difference in a good out come!

[Janae]

Oh...Applecake. thanks for the webpage. I am cking it out now.

[WNYLady]

Janae...you are right, you ARE strong and you CAN do this. You have received, what sounds like, positive news to move forward. There will be lots of anxiety I am sure but in the end ( no pun intended ), you will be healthier than you are now and ready to begin that road to recovery.:-) My. thoughts and prayers are with you!

[Janae]

Thanks WNYLady...I need all prayers. Trying hard to not be a wimp and looking forward to getting my life back like it was years ago before the big D hit me.

[applecake]

Janae:

She sounds like an awesome doctor. I'm so glad you found her. Fantastic. I love that she told you exactly how she would fix it. That must give you some relief - and to have a surgery date scheduled. Also great. I am "nova" on that site. You can handle it.

xoxoxo

[Betsy]

Thank you, TT McCall, you really phrased all that well. I agree completely, it is where I am at and your post gave me hope and made me feel like putting on my walking shoes ... congrats on those five miles! That is really an accomplishment, especially considering how you felt in the beginning. Take care.

[Martha]

Going to have my 2nd colostomy closed in few days. 1st one was only 2 years before. Dr. now says wants to resection without my colon. Colon was gangrene this last time. He's took so much colon I think hr feels it would be safer to connect without it. I had so much scar tissue when he closed the first colostomy it took 4 hours. Please pray for me and I'm going the route that there's nothing I can't overcome with God's help and this may take some time but will work.

[TheRaz Stuart Fl]

Hi All

Well I am still alive going to start 5th round of Chemo on Tuesday The 4th not looking forward to this as each month it gets worst then the month B4

Hope all are doing well and God Bless

Teddy Bear Hugs

Larry

[Janae]

To all my partners in DD world: Just want you all to know you all are always in my prayers as I hope I am in yours.
Martha....We can do this, I know with God's help we can. I read an article today about a woman who is fighting breast cancer and she said "We can't choose what happens to us BUT we can choose how we deal with it" I needed to hear that so much. Then this afternoon I watched Pollyanna on the family channel..(you can tell I'm bored can't you..Ha) and that movie hit me so hard in the face it was not even funny. That little girl changed the entire town with her positive attitude...finding something good in everything and here I sit having my pity party...I am praying hard for a more positive attitude as I face my 2nd surgery on 9-12th and I pray for all us to overcome this!!!

[Betsy]

Larry, you're a warrior and a champion. I really admire you. I wish what you are going through was not so hard. It seems like the chemo part has been going on forever and as you say getting worse (I think they call that part accumulative, like it gets stronger and stronger), and I pray this will be the last round and you will be well and on your way to total recovery; from what I hear the nausea part goes away after that last round. All the best. There are a whole bunch of people out there thinking of you - and I bet you would get a round of aplause and a standing ovation if you headed over and said hi to all the old buddies over at daily strength, like here

http://www.dailystrength.org/c/Diverticulitis...

You have to sign up first, and get an okay, and then you're in, and it's fun.

Tuesday I will be saying a prayer for you, Larry, all the best and you will be in my thoughts - I will keep the 7 hour time difference in mind. Take care. Hope you can have a nice Labor Day holiday. Peace.

[Bonnie]

I will be thinking about you too Larry and will say a prayer!

[Terri]

Janae, Larry, and Martha, I'll be praying for all of you. I admire all three of you for your courage and strength.
Janae, I laughed when you said you were bored and what you were watching on tv. Me too! Oh, my gosh, so much television watching! I have never watched so much tv in my life at all times of the day and night! I practically memorized the HGTV channel!
I'm glad you have found someone you trust and hopefully you will just have ONE more surgery, but I think you are doing a great job getting your spirits up. I don't know if you are taking anything for anxiety but I did. Having multiple surgeries is hard on your body and mind. I took clonipin (not sure of the spelling) most days - should have taken it every day - I am now weaning off of it, but anxiety meds really helped me between my surgeries and after. You may not need it, but it's just a suggestion - I am a little highstrung in the best of times so you can imagine what I was like with surgery May, June, AND July!
Larry, good luck with your treatments. You sound like a really special guy.
And Martha, I love your optimism and strength. I sure hope this is the end of your surgeries. You deserve a break.
Thanks to all of you on this website. It's been very comforting to have people to "talk to" about our issues. I am going back to teaching third grade Tuesday. Little nervous but I think I'm ready. I still have issues of course - I have stomach cramps and odd pains in various places in my abdomen but I guess that's the way it's going to be, but all in all, much better than before.
Have a great Labor Day!

[applecake]

Larry:

I'm sending you my good healing thoughts too.

You know I saw a good cancer comedy not long ago - 50/50. It really spoke to me after having my sigmoid cut out and getting my colostomy and everything. It's a funny, poignant film. Not sad. Highly recommend if you feel like you can't relate to anything.

Otherwise, I've been having a marathon session of "Homeland" if you want total escape material. Highly recommend!!!:-)

Courage!