Problems after bowel resection

[aross123]

This discussion is related to Problems after bowel resection.


In February 2006 I had an emergency bowel resection.  For no apparent reason, a large portion of my small intestine had twisted and the blood supply to my intestine had been cut off and died.  About 40% of my small intestine (ileum and ileocecal valve) had to be removed.  For the next 2-3 months I had horrible diarrhea after everything I ate.  Within one week I went from 135 lbs. to 115 lbs.  I followed a very low-fiber, low-fat, bland diet.  My surgeon told me that I would suffer from diarrhea for the rest of my life and would have to control it with medication.  My doctor told me that things would get better in time, it just takes awhile for the remaining intestine to adapt.  It took about 6 months for me to maintain a weight of 120 lbs.  (I am 5' 4").    

It's been almost 2 years now and I have problems every day with digestion.  I have diarrhea every morning that lasts sometimes until about noon (some days are worse than others), and the rest of the day I have digestive pain, cramps, sometimes bloating and gas from whatever I eat.  I have tried cutting out certain foods but there doesnt seem to be any rhyme or reason to what causes my discomfort.  I know I am now lactose intolerant and cannot break down fats because of my ileum being removed but sometimes even just a piece of toast will not sit well.  I've recently started taking digestive enzymes to help break down fat, carbs, proteins, milk sugar, and fiber.  The suggested use is 1 capsule before each meal but I take 2 with regular meals and 1 with snacks.  The enzymes have helped considerably with the digestive discomfort (bloating and gas) but I still have diarrhea which I dont expect to every go away.

I've spent the last 2 years trying to find information on life after a bowel resection but I havent had any luck.  I went to see a nutrionist through my medical provider but ended up teaching her a few things about malabsorption.  I get monthly B-12 injections, take a multi-vitam, calcium, magnesium, and probiotics daily, and drink about a gallon of water everyday.  I've had to go to the emergency room a few times for intravenous fluid due to dehydration.

I'm a stay-at-home mom of a very handsome 1 year old so I am always near the bathroom but on the days I am away from home I usually dont eat for fear that my tummy will act up.  Food is no longer a joy, it is a complete hassle.  Anyone out there with the same kind of problem?  I would love to get some advice on how to cope and what things that have helped you to suffer less.

[Sue357]

Kit:  thanks for your kind words.  That's funny you should mention where the pain is.  I notice the soreness and burning and itching seems minutely better today but I have been watching diet more, plus, like I said, inlaws are here.  But I have noticed that sometimes the pain is down where you describe, as well as in the back area, too.  Also, what is Lyrica? It sounds familiar and I may talk to my doc about it.  Take care.

RX:  I admire your strength and courage.  Also, feel for you as you are going back to work.  I hope that everything goes well at work.  You are definately right about this economy.  So far, my hubby and I are okay with our jobs.  But I teach out of a county facility where they do unemployment filing, job searches, etc., and they are seeing their numbers go way way up... lots of people out of work.

[RxGirl95]

I hope you all are feeling well.  I am preparing myself to return to work on Monday!!  I don't think I am ready for this!  But, with the economy the way it is, I can't afford not to go back now.  If I don't return now, I don't think my job will be there.  Heck, I am not even sure my same supervisory position will be there on Monday!  I might have to work myself back up the ranks again!  
I have only one drain in now.  The output was too much for my surgeon to start the removal "process" on Tuesday.  I think I have him convinced that when the time is right,(hopefully, tomorrow) he will remove it all on the same day instead of backing it out in stages.  (I hated that!!)  Right now, the removal is scheduled for next Tuesday, BUT, I would then have to go from the Dr.'s office to work, which means I would not have any pain meds for the removal.  I called his office yesterday and spoke to his assistant (she is FANTASTIC!) and she is checking with the doctor to see if he will take it out tomorrow so I have the weekend to recover from that "trauma".  My abdominal wound is getting very, very small.  I still have a home health nurse for the rest of this week.  Once I go back to work, I am not eligible for home health care.  So, my husband and I will be packing the wound ourselves.  I am not afraid of that. We both have backgrounds in the medical field.  (Which has made this whole ordeal more mind-numbing, since we REALLY knew what was going on!)   We probably could have taken care of the wound when it was a wide-open, but we should we when we had someone else to do it!  Plus, it was reassuring to have an RN to talk to everyday!
Speaking of which, my nurse just got here!
Will post again soon!
Suzanne

[kitnkate]

when you had the set back where was your pain again? I know that when I have a day where its not so bad and then do more or have company the pain finds its way back! I feel for you. I am glad that you have the cononoscopy soon. I don't think that your pain is mild. Any pain is bad and we hate it. I get cranky and wonder why we are tested so much! I know that Rx is really having to go through a lot and I feel for her and praise her ability to do so with such grace! I think you should stay away for roughage still. It could block you if you are still swollen. A doctor told me that we stay swollen for about a year! Rx girl has in drains I know for infection, but the swelling stays with the bowel a long time. Does your pain ever go down the top of the abd where the leg meets the body? I am trying Lyrica because the dr said that I should not have such nerve pain. Maybe you could mention it to your docor. So far not many side effects. I hope it works.
I have you to thank that at 5 month out you still hurt because you are my hero! I just feel so alone with some of my other friends because they just do not get what we are going through.
Later,
Nancy

[Sue357]

Hope you are doing well. I was doing much better but have noticed a backwards step the last few days.  Not only the itching, but I am experiencing soreness in the surgery area as well as lower.  My bms are normal but to think a week ago, I felt almost no pain or soreness!! I also have company in from out of town, mother in law and brother in law, and work is hectic crazy.  Not sure if that is contributing.  Good news is I am scheduled for follow up colonoscopy on Dec. 2nd.  Hopefully, this is all normal.  Not sure if my diet is contributing, also, but am staying away from nuts, seeds and roughage still. Or perhaps stress.  I am taking pain pills, in evening, and motrin during day.  It's not unbearable but seems so mild in comparison to what RX is going through. Take care and thanks for everything.  How is your healing going?  

[Sue357]

So glad to read your post.  Isn't it funny how having BMs can make us so happy....lol.  I hope that all will be well by the time you go back to work.  So sorry about the pain.  I did not have to have drains or a bag, so don't really know what it is like.  They attached me back right away.  However, that has come with pain, as well.  However, slooooowly but surely, I am getting back to what ever "normal" will be.  On Dec. 2, I go for a colonoscopy as well as an endoscopy ( I have had GERD) for years, to see how everything is in there.  I am a little nervous as he is doing a full colonoscopy, not just sigmoid.  The good thing is it is being done at the hospital.  I have had 2 before, but they were only screenings as my older sister had colon cancer.  God bless all.

[RxGirl95]

Hi all!
I hope this post finds you healthy and doing well.  I saw my surgeon on Tuesday.  He decided it was time for the drains to come out, BUT, he wanted to consult with the colleague that assisted him during my last emergency surgery.  My doctor came back in the room and announced that we will be taking the drains out in stages over four appointments!!  I could not believe what I was hearing.  Drain 1 & drain 2 both share the same insertion site on my abdomen.  They were being held together with suture material as well as being attached to me with sutures!!  He proceeded to separate everything with a quick snip, and then he began to pull drain 1 out to the surface.  He stopped just short of taking the whole thing out.  So, I had a 5-6 inch plastic "sump pump" (no better way to explain it! lol) just under the surface of my skin.  It was one of the most horrible things.  I could actually feel this plastic thing under my skin!  I went back on Thursday for him to remove the rest of drain 1 and I could barely walk, apparently the plastic part decided to take a "tour" the bottom of it was neart the groin area! ouch.  I now have a long, skinny bruise on the right side of my abdomen.  I told him he is going to have to remove drain 2 all in the same day because I will not go through the pain again.  I told him that I have not felt that much pain since I was immediately post-op.  He said he would see what he could do!  I know he is trying to be very careful with me, but this is a little ridiculous!  Since the area around the drains was a little red and swollen, he put me back on antibiotics!  I am supposed to go back to work in 10 days, and I would like to go back without so many issues! lol  He also said that my abdomen was more swollen and distended than normal, so that is another reason for the antibiotics.  I was a little upset about that until yesterday...Mother Nature came calling!!  I haven't "heard" from her since August.  So, that is why I was so bloated.  I didn't have the heart to call my doctor to tell him that part.  I will share it with him on Tuesday! lol
I hope you all are feeling well and are in good spirits!
I will post again soon!
Suzanne