My name is Danielle and I’m 30yrs old. I have colonic inertia and after years of different treatment I’m going to have a total colectomy. For as long as I can remember the only way I was able to have a bowel movement was with the use of enemas (which stopped working 6 years ago) and Dulcolax suppositories. Phospho-soda and Go Lighlty have never worked for me at all. As of lately, nothing has worked and I haven’t “evacuated” in over a month. As many of you, I have taken the sitz mark test and ALL markers stayed in my colon, not one moved.
When I was younger and went to doctors explaining this, they told me that I was lying and referred me to psychiatrists all of which told me there is nothing wrong with my mental status. Yes, I’m not going to lie, I suffer anxiety and depression but that’s because that lack of control and helplessness I feel with this condition. On top of the bowels, I also have a connective tissue disorder which makes surgery more complicated. I guess I’m here for support and to know that I’m not alone. I never believed I was “crazy” but I have anger towards the docs who didn’t believe me.
I have a great GI now, but I’m terrified, especially of the possibility of a “BAG.” My life hasn’t been “normal” for as long as I can remember which falls into all aspects of my life. I feel like a liar. I mean how do you explain to someone (a date let’s say) that I can’t go out because I’m so bloated, haven’t gone to the bathroom in weeks, pregnant looking and my clothes won’t fit over my stomach? I’ve shied away from relationships because everyday is different and I’m in so much discomfort. I have two sets of clothing, my “bloated” clothes and my “normal” clothes. I haven’t worn my “normal” clothes in over 7 months.
I’m not sure if anyone has dealt with this too but I have constant bacterial overgrowth which is treated with antibiotics (flagyl, ech!!) but they don’t work anymore, so the last 7 months or so have been terrible. Without my big, baggy clothes, I look pregnant.
Regardless, I’m terrified and do not know what to expect. To be honest, I have NO IDEA what it will be like to go to the bathroom laxative free. That concept is so foreign to me. I’m also worried about weight loss. I’m 5’10 and weigh 125-130. Can someone advice me on what to expect? Have any of you felt as though you were living a “double” life like I feel? I’m not sure how this online group in regards to emailing and messaging (can you email me directly?) but any info would be great. I will be checking in for responses.
Thank you all
Thank you for responding to my post. To be honest, before finding this forum, I didn’t even know that other people dealt and are dealing with similar issues that I have. In a way I was suffering in silence. I feel that nobody really understands it. As for surgery, I know that it’s the only option now. I’ve tried EVERYTHING, but I’m suffering so much, physically, mentally, and emotionally.
When I was younger I was able to “manage” it better but everything felt so scheduled and everything revolved around the suppositories working (or not). I can’t even tell you how many events, dates, friends, etc… I missed out on because of this. I feel so secluded and yes, out of control.
I know this is a common fear, but I’m so scared of going under. When I was 14 I had an appendectomy and I was fearless, but now I’m terrified. I suppose it’s the feeling of lack of control as well.
So, you had a total colectomy and you have a pouch? How long where you in the hospital?
I have not yet met with a surgeon. I am meeting with my GI on the 13th to discuss everything and then schedule an appointment with a surgeon that he highly recommends.
I know though that the procedure is removing my entire colon and connecting the small intestine to the rectum, but I’m not sure if I will have a bag after surgery for a while or not. I’m uncertain as to when I will start going to the bathroom on my own. I’m sure all of my concerns will be answered by my docs and the surgeon but I really need the support of people that understand from a personal point of view.
I, too, had j-pouch surgery 5 years ago for ulcerative colitis. I was sick for several years with chronic diarrhea and wouldn't even consider surgery. At one point in my illness I was being hospitalized for 9 days on bed rest and no food. My ninth day there a nurse with a j-pouch came to speak with me about surgery. Everything I had ever heard about this surgery and its outcome contradicted what the nurse told me. Long story short, she looked great, was able to work 10 hour days, runs marathons, and lives a full life. Meeting someone face to face who had suffered as I did and who obviously was healthy convinced me that I needed a surgical consultation. My GI was not in favor of the j-pouch surgery and I was not in favor of a permanent ileostomy. I met my surgeon who convinced me I could have a normal healthy life and I signed on for surgery.
I had the surgery and immediately could tell my UC was gone. Within in a couple months I went camping and 3 months after surgery I traveled through Europe. I did a half marathon at six months and at 2 years I hiked 200 miles across England. I am leaving shortly for a 100 mile hike through the mountains of Scotland. My point is that you will get your life back and begin to experience things that you may not have had an opportunity to since you have struggled with CI for so long. Your surgery will not be as drastic as the j-pouch and you should lead a much improved life. The best advice I can give you is to make a consultation with a CR surgeon and ask him/her if they have any CI patients you can speak with. Talking one on one with patients who have been through this is far more enlightening than any information a doctor can give you. All my best for your improved health.
Make usure you ask your surgeon all of those questions! Sue is right, talking to someone one on one can also be very helpful. I know of a few people with permanent ileostomies so I have resources available incase I have any questions that come up along the way and that don't necessarily require a nurse/doctor to answer.
As for when you will be using the washroom on your own, to the best of my knowledge the surgery is rarely done in one step. You will likely end up with a temporary ileostomy for between 3-6 months. By the time you get used to dealing with it you'll almost be ready for your second surgery! I am also a favourable candidate for the j-pouch but I will have to wait 6-12 months for mine. And honestly, dealing with the recovery from this first surgery I couldn't imagine myself having surgery any earlier than 6 months from now.
If you have any questions feel free to ask, there are plenty of people who can answer them for you!
Thank you all for your answers. It’s so great to know that finally there are people who understand me. My family tries to be supportive but it's mainly "Dani, you have to do the dulcolax suppositories even if it doesn't work. Try again, it might work this time." I'm sick of hearing that. The suppositories stopped working!!! My colon does not work!! I know they are trying to be positive, maybe in a bit of denial, but it’s frustrating. I don’t even know how they can operate while so compacted. The “pre op” stuff doesn’t do anything for me but taste disgusting.
I've been dealing with this for about 20 years and it really got bad in my mid 20's. Like you Bryan, I don't leave the house unless I have to, I've secluded myself and in "hibernation" which I call those months where it's just too unmanageable. When I was a bit younger I would have a few good months then BAM, 6 months of hiding. My friends at the time did not know why I was acting so “mysterious” and “secretive” and pretty much I have alienated friends. I only deal with my family now. I feel like my body and mind are not in sync. I’ve felt like this for a long time.
Last night I was spitting up blood and feeling really ill.
I was told by my GI that I MAY have a bag for a while, but he said it's best to speak with the surgeon for all of the questions I have. I plan on writing everything down that I want to ask and the idea of speaking to others that have a had total colectomys is a great idea. I didn’t know if that was possible due to confidentiality, but I will ask the surgeon for names. I know that I would not mind at all speaking to others that will have this procedure after I have had it for comfort and advice.
On another note, I just found out that my dad has colon cancer, so now I don't know how to schedule my surgery. I feel so selfish, but I don't know how I will recover, how much pain I will be in and I want to make sure he's ok.
This is so hard!
Mom – My thoughts are with you today and I hope the Surgeon consult goes well. As for a surgery date, I don’t have on yet. I have two kinds of insurance, Blue Cross and insurance through my medical group. The only surgeons in my medical group are orthopedic and general and I need a colorectal surgeon so my GI put in a request with the medical group (The head happens to be my former primary) for me to see the specialist. I’m waiting for a reply. If he says no, then My GI will have to write a request to Blue Cross. I shouldn’t be worried about approval because they actually approved a consult at the mayo clinic. I am still worried though because I don’t want to wait. Waiting is the worst.
Bryan – Yes, it’s very hard for other people to understand if they are not going through it. Think about it, it took years for docs to believe me. As for the Ng tube, I have never had a problem with it, but just relax and know it’s for a greater good – a better life!!!
In the meantime, my GI has scheduled another round of tests to be positive that my small intestine and rectum work properly. I just had those tests, but it’s preliminary and I’m happy that he wants to be 100% sure. Right now, I’m seeing my GI tomorrow and I’ll see what happens from there. My GI is really great and gives me all the time I need whenever I see him. It’s surprising to me because he is the Head of GI and a professor of motility studies at two different hospitals and also speaks worldwide, but he always has time for me. He says that he finds my case “fascinating.” Honestly, fascinating or not, I just want to be well.
I had a subtotal colectomy, same surgery you are speaking about (removing the colon, and attaching just the very end of small intestine to the rectum). I had colonic inertia also. I had my surgery February 2005. It has been the best thing I could have ever done. I would recommend to you going back through the old posts named Total Colectomy, there are parts 1-10. Very long, but trust me, lost of information in there- AND lots of good, caring people too. Good luck with everything, ask any questions you want. My email address is RedVW28216@yahoo.com if you want to email me directly.
I wanted to write sooner. I know how hard this is on you considering your past surgeries and the lost of your parents. I have often questioned my strength and if I can deal with this anymore, but I have realized that you, I and everyone else here are very strong courageous people. Just asking for help is courageous. Remember, we are always given different roads in life and many have obstacles. Dealing with the obstacles is difficult and painful, but when all is said and done, it makes you stronger. Just think about all of the people you can you help who feel so isolated and scared. Hang in there, ok? You may want to think about seeing a psychotherapist for support and someone to talk to. I do and he has helped me a lot.
I, too, battled chronic constipating (colonic inertia) for 20 years. I am 41 years old and after battling this disease for 20 years through the use of laxative (which stopped working 10 years ago) and daily enemas (that also stopped working after 2 years), a colectal surgeon was recommended to me by a friend of my husband, who had colon cancer. Just the though of never having to use laxatives or give myself an enema was GREAT! But the possible outcome of having a open surgery, blood transfusions, an ileostomy just flew right by me. All I heard from the surgeons lips were you will never have to do what you did to go to the bathroom again. You might have 7 to 8 BMs a day, but in time, it will cease to approximately 2 times a day although everyone is different. I had all the appropriate tests completed and the results were either live with what I had been doing to myself which was a slow death in process or have a subtotal colostomy. With the support of my husband, my daughter, and family, I decided to take the chance especially being that my surgeon was the best in his field and plus I trusted him. Although I did end up with an ileostomy for approximately three months in addition to various admissions after my initial surgery for a PicLine to be inserted into my right arm for TPN 14 hours a day feedings to gain the appropriate weight to have my reversal ileostomy. I was definitely scared and depressed until the day of my reversal. Before I had my reversal ileostomy on 12/20/05 when I wasn't taking a nap, I was crying. I could not believe that my first surgery took 9 1/2 hours for a laposcopic subtotal colectomy and a morphine drip. I did not learn that I had "THE BAG" until day four of my hospital stay. The second day in the hospital, I had internal bleeding (clots around my right kidney) when they had to do open surgery and received four blood transfusions in total. After they took me off the morphine drip, the NG tube came out and so did my recognition of my ileostomy and my stomach which resembled a set of railroad tracks. On day seven, I was released and came home to my loving family and my gorgeous family pet, Pepper, a six year old pit bull mix. She took care of me during the day while my husband worked and my daughter attended high school. Every three days a home visiting nurse would come by and check my blood pressure, weight, and my stoma (ostomy wound) and change my PIC Line bandages (must keep them clean and free of infection). Other than that I would take my Tradimol (sorry about the spelling) and I would sleep until my family came home. My Pepper would give me her paw to pull me up from the sofa and walk along side of me to go to the bathroom and wait until I was done doing my business. Everyday I would cry and cry and say that I will never get this ostomy reversed. I said a "Novena to Saint Jude" day in and day out. Plus I had alot of people praying for me, I looked terrible and felt horrible and hoped that there was a light at the end of the tunnel on getting better. Low and behold I had my reversal four days before Christmas, everything did not go well at first. They gave me a private room for recovery this time. My second and third day were hell. I was vomiting the stuff that was built up in my stomach and one of the nurses found me on the bathroom with one of the bed pads kneeling on the bathroom floor covered in vomit. My surgeon's tech assistant during the surgery came in and said I need the NG tube again and that was painful trying to get it in. I cried and vomited more. I requested the tech assistant to stop and let me be. He left with the nurses and the minute he walked out the door, I vomited 500 liters of brown crap from my stomach in which he put me back on IV meds. The next (third) day my surgeon came in and said either we put the NG tube back in or you will have to have another surgery. The second he walked out of the room, I had my first BM but it was all blood. A few hours later, I had a BM and they kept me on fluids until my discharge. I was glad I got better because my body could not take another surgery after having a total of 23 1/2 hours for three surgeries. Christmas Day was GREAT being home with my family yet I slept most of the day away. Here I it is 4 months since my reversal ileostomy and I had obstacles to overcome such as a sore and irriated bum, loss of weight, loss of hair, insomia, still depressed hoping that I will get better especially after reading the different forums here. I must be patient and remember to keep a food journal and note what happens after you eat or drink something.
Keep you chin up and weigh the advantages and disadvantages of having this surgery. Remember, you and only you are the one that must live with this condition and you and only you can make the decision to have this surgery. Sure your condition may have an effect on those around you, but be sure about what you want to do ask questions and get more than two opinions. Good Luck! And TAKE CARE OF YOURSELF!
The second day after my reversal ileostomy, everything seemed to be going great until mid afternoon, I started throwing up brown stuff accompanied with a terrible headache and throbbing pain where they closed me up. I thought nothing of it until later that evening when my husband and daughter came down to first (an hour drive) and they brought Subway hoagies. Unfortunately, the smell of the hoagies was killing me and all I wanted to do is sleep. I felt bad they only stayed 45 minutes and the minute they walked out the door, I was throwing up so much that I took the throw away padding off my bed and placed it on the bathroom floor near the toliet. In a matter of seconds, the nurse came in and found me in a fetus position covered in vomit. She immediately called the doctor and he came in and said we have to place the NG tube back in her tonight. He tried and tried and it never happened. So he increased my IV, gave me something for the naseau and an hour later, I vomited all over myself, the bed, the floor approximately 500 liters of fluid (brown). The next day my surgeon came in, said it is Day 3 still no BM. He said the tube must go in or else. He let his chief resident give it a try. SHe was so compassionate numbed my throat and nose then tried. No dice. I was totally upset and scared. Now my surgeon will have to insert the tube. 15 minutes later - I had my first bowel movement filled with backed up blood resembled a placenta (afterbirth). Two hours later, I pooped. I was thrilled to death that everything finally worked out although they kept me on a restricted diet for three weeks. Mostly fluids at first.
I ended up with a temporary ileostomy because I had a leak with some air pockets that they wanted to give my small intestine and rectum heal appropriately.
Well, I hope I did not bore you. The best of luck to you on Monday.
I had my surgery Feb 2005. I did not have a temporary pouch or ileostomy. They reconnected me. I was in the hospital for 6 days. Stayed at home 2 weeks, then went back to work full-time. My husband was sort of "against" the surgery, it seemed drastic to him. Now, he is very glad that I had it and sees how much I feel better.