Total colectomy part 17

April,

Your post is very disturbing to me. You cannot live with this much pain and frustration. God knows that you are suffering. I know that he watches over all of his sons and daughters. I know that he loves us all dearly. However he gives us hard trials so that we might learn to rely on Him and have faith that He will help us. When I was very very ill and could not eat any foods, continued to vomit everyday, and was laying on the floor all day because I could not walk, I begged God to please heal me. I pleaded with him that I would do anything I could for Him if he would only take away my pain. I suffered for over 12 years total and now I am nearly pain-free. In the beginning I felt that God had forgotten about me. I felt alone and hurt. But deep inside I knew! I knew he was there and I knew he loved me. So, I began reading my Bible everyday. I read and studied His words. When I finished the scriptures, I read them again and again. I tried to remain positive and know that his trial was given to me so that I could become a stronger daughter of God.

Now 8 years later I have a wonderful relationship with my Father in Heaven. I know that he loves me and I know that he loves you! He has not forgotten you. Please continue to call upon Him and continue to seek out new doctors. If you lost your medical benefits with your husband's job, look for some temporary assistance with a government agency. "Seek and ye shall find, knock and it shall be opened unto you". Keep seeking April don't give up on yourself, your daughters, or your husband (he needs you too).

I know this is kinda preachy, but I really felt impressed to type this to you. Just remember, you are NEVER alone! Just as Christ walked with his Father, you walk with your Father too.

Hi,

Where is everyone?  Hope all is well.

Phyllis

Hi Robin,

Sorry to hear you have not been feeling well...please let us know what surgeon says...

I'm still around, just a bit disappointed. I'm having to take Senakot in order to have a BM and sometimes it doesn't work. I have an appointment with my GI next Monday to see if we can go ahead with the colonoscopy/balloon dilatation or if I really should give it three to four months to open (the anastomosis). I feel like I did two steps forward and now it's three steps back. Either way, I do feel better than I did before having the surgery.

Terri and Robin,

It sounds like you both are having trouble even after a TC. I wish surgeons would express more of this type of information to patients before patients have the surgery. For many people who suffer from constipation and lazy intestinal problems, a TC only lessens the amount of discomfort but it does not omit the constipation. You still have an intestines and it is still lazy. You just have less than you had before. I hope you both find some relief. about a month after my TC, I had to take something to help me have a BM. By 6 months post, I was taking several different laxative type agents. And by 8 months post, I was fully dependant on over 6 different types of laxatives daily and I was hardly eating anything. Please when you see your Dr, ask him about laxative dependency. The whole reason for having the surgery is so you can go without medication, constipation, a bloated belly, or pain. Be very inquisitive and don't except medical jargon as an answer. Doctors like to talk over our heads when they do not have a "real" answer. This way they sound smart and we're too nervous to say "can you explain that again please in a way that I can understand it better." I get so frustrated by the medical community! Sometimes my hubby bugs me to go to medical school. My fear is that I may lose myself and become one of their desensitized drones who care more about seeing churning and burning 45 patients a day rather than spending one-on-one time with each person.

Sorry for the rant!

Peggy

Thanks for the reply and noticing that I have been missing. I'm still checking in on everybody, but haven't had much to add lately. My husband and I are both from San Diego and both of our families are still down there, so we've been worrying about them. So far everybody is safe and only my husband's brother and his family have had to evacuate. My son has CD and UC and I sometimes wonder which is worse; the constipation or the diarrhea. I'm thinking that I'm not really constipated per se, but that the stool I'm forming is just too large to pass through the anastomosis.

Amey

As I mentioned to Peggy, I'm hoping that I'm not actually constipated but that the stools are just too large to pass through the anastomosis. When I had my postop appointment, the surgeon checked and said that the opening was about the size of his pinky and would open within three to four months. He told me that I needed to have a colonoscopy at that point with the possibility of having a balloon dilatation done to open it up. Luckily for me, I work at a doctor's office and my boss called a surgeon that just did surgery on his brother-in-law to see if it could be done sooner. That doctor said that it is common to have strictures and that the dilatation can be done after six weeks. I have an appointment with my GI on Monday, so I'll have to see what he says. As for he doctor's trying to talk above me, they won't be able to since I do medical transcription and can pretty much understand what they say.

April

I'm happy to see that you've posted again. I was worried about you and I'm happy to read that you're going to start therapy.

AMEY - Thanks for your input, it is greatly appreciated.  Although I've had a few problems since my TC (almost a year ago on 11-09), in no way do I think it was unsuccessful.  I consider it the best thing I could have ever done for myself. 

When one comes to that crossroad of making the decision to have this surgery, there's NO PROMISES/GUARANTEES that they will be 100% problem free.  Yes, there are those who DON'T have problems, others have minimal problems, and then there are those that have continual problems resulting in somethnig totally different than the TC, you being one of those people.

I do have days where I may have a bm two times a day and other days once every two or three days.  I do take MiraLAX daily, sometimes twice a day - it just depends.  I will also take stool softeners when I feel I need to.  I really don't have the problem that Terri is experiencing with regards to the stool being too large to pass through the anastomosis.  I've not had any problems with the anastomosis, just a lazy small intestine.

My appointment with the surgeon yesterday went well and he prescribed Bentyl for what he thinks is spasms I'm having which could be related to the lazy small intestine or what he called IBS.  I also go for my third CAT scan on my abdomen next week to rule out anything more serious that could be going on in the abdomen.

APRIL - You continue to be in my thoughts.  I'm glad to hear you'll be going to therapy starting next week.  I think it will help you tremedously!!  I can so relate to the issues of depression and some of the "dark" thoughts you've experienced - I've also experienced them.  For me personally I know there's a God and I hope you will eventually know that too.  Sometimes our world is so clouded that we can't see the future, but God does and He will pull you thru this!!!  Talk to your sister, have her give you scripture, and trust in His word!!!!        

Peggy - Thank you so much for sharing the info on the Bentyl, I so appreciate it!!!  It's nice to know someone who actually takes it compared to the "written" information they have on it.  Are you still on the lowest dose possible (I think it's 20mg) or have you had to increase it over time?

Is anyone else taking meds for spasms in the small intestine? 

PEGGY - Thank you so very much!!  I really do appreciate the input.  My surgeon is having me take the Bentyl four times a day too and hopefully in time I will be able to go down to one a day like you or even completely off of it.  Lord knows I take enough medication now severe depression (manic). 

I guess the statement "IBS" or even a "LAZY SMALL INTESTINE" after a TC for Colonic Inertia is bothersome to me.  It's also bothersome to me that there is an apparent "mass/knotting" in the right side my abdomen that the two previous CAT scans are showing no abnormalities.  Hopefully the one I have this upcoming week will at least show something because there is no doubt something there, whether it be something very small and nothing very serious.

Thanks for listening to me vent.

Thanks a lot Peggy!!  I've responded to you on the other thread!!

Robin,

I too suffer from CI and have always struggled with consipation. I was wondering if you were aware that the #1 side effect of Bentyl is constipation. If you are taking it 4 times a day, you might be contibuting to your problem. Have you talked to your Drs about the side effects of Bentyl? It is not a strong medication so maybe it does not affect you like it affected me. My sister takes Bentyl to slow things down when ever her colon goes into spasms she will have 10-15 BM's in a night. So, this is what her Dr gave her to help.

I just thought I would share this with you.

NaNaJ - Hello and Welcome!!  Be assured that you've come to the right place - There are so many wonderful, helpful, supportive, and "been there" people here!!  It looks to me that you're doing a wonderful job using this site.

What was the reason for your Colectomy?  My goodness, you're for sure still in the very beginning phase of healing.  Just remember to take your time and don't overdo it.  If your surgery was done laparoscopic the pain under your ribs is likely trapped gas but I would consult the sugeon's office just in case.  Please be patient with yourself during this time and listen to your body.  Regarding your bottom - there is an ointment out there but I do not remember the name of it.  I know someone here will be able to come up with the name of the ointment and/or give you some tips.

AMEY - As always, thanks for the information and sharing it with me.  Yes, I am aware of the side effect of constipation, not to mention all the others.  I just started taking Bentyl on Friday and because I've been taking MiraLAX daily (sometimes twice for months now), I haven't really noticed it causing additional problems.

I also noted on the "patient" handout that people who've had a colostomy or an ileostomy may have issues with diarrhea - now I have neither one of these but maybe the Bentyl works differently in the small intestine due to the TC and the small intestine taking over where the colon once was - if that even makes sense.  The surgeon said Bentyl could possibly help move things along as well.  I don't know if this even makes sense. 

I know this sounds stupid but I hope the CAT scan I have Wednesday morning (the 3rd one) will finally reveal that something is going on inside of me when something (a mass of some sort) can be felt during an external examination.

TERRI - I wish you luck with the colonoscopy and balloon dialation.  Hopefully you won't have to go thru more tests - I know how you're feeling, I really do. 

Robin

I knew you'd understand since you're going through a similar situation yourself. When the GI mentioned the motility studies, he talked about having them done in the Bay Area. I asked him if they did them around here. He said yes, but not that often. He told me that Stanford and Pacific Medical Center in San Francisco have the best motility programs in the state. Both of us are hoping that the balloon will do the trick.

Amey

If I have to go to the motility doc, I'll definitely keep you updated on what happens. Our son has Crohn's and we're both jealous of each others bowel habits. Now is that 'family' or what? LOL