recovery from colon removal

[Christi71]

My close friend had UC/Crohns and as a result had his colon removed about a year ago. He is still extremely tired all the time and suffers from headaches, persistent cough and complete lack of libido. He is starting to lose all hope of ever being healthy again. Can you please suggest any medical (or perhaps holistic) options he should try? At this point I'd bring him anywhere and do anything I could to help him feel alive again. Thank you so much for your help!

[currangirl]

Does your friend have an ileostomy or was an S-pouch; J-pouch; or other internal pouch created?  My 17 year old daughter who first had symptoms at age 31/2 had her colon removed at the age of 4.  Her pathology was indeterminate for UC or Crohns however, due to where she was presenting (Colon only) we opted to have the surgery.  An s-pouch was created at the time. A couple years later she developed fistulae that is consistent with Chrons however no biopsy still has conclusively determined one or the other.

Hers is such a long story that I won't go into, but here we are 13 years later and just discovered that this s-pouch had failed completely. As a result she had such incredible amounts of infection in her body going on for "years" her surgeon stated.  For a year I was seeking to find out why she was exhausted all the time, etc. (all similar symptoms to your friend).  This may not apply at all, hence my question, but my daughter was not hooked up to her s-pouch for all of these years because she develpoed continual pouchitis.  We have moved around so much that we know know she didn't have consistent care.  What finally happened was a GI doctor checked her for B-12 deficiency ( could explain tiredness) but found nothing there.  He took her off of Metronazidole which she had always been on.  What that drug was actually doing was masking her symptoms.  She never had an elevated white blood count or any other symptoms (bleeding, cramping, etc.) that would indicate to us that it was Chron's related, so we were shocked to hear that there was so much infection going on in her body.  So, for all intense purposes, my daughter has always had an ileostomy, and we believe that is why she has grown so well, and has not ever had any absorption problems.  But with that much infection going on of course it makes sense that she would be exhausted all the time.  Without knowing any of the medications that your friend is on or what his exact situation is, I wouldn't even try to offer any advice except that he get a 2nd opinion.  We got the most help from the Cleveland Clinic in Ohio.  We  had just moved here to Michigan last July when she began bleeding from her bottom, and what a nightmare we have had with physicians here.  So, we contacted her original surgeon at the Cleveland Clinic who we had not seen in 9 years.  He remembered our daughter's case with expert clarity.  He is of course a pediatric surgeon, but one of the best in the country.  We followed him to The University of Hackensack Medical Center in New Jersey where he is now the Head of all Pediatric surgery, this past December for removal of this failed pouch .We have returned for two more out-patient surgeries since, so I hear you when you say you'd bring him anywhere to get good help.

Because my daughter has for all intense purposes grown up with this disease it hadn't really occured to us that she would really have no idea what it is truly like to feel well, unlike your friend who obvioulsy had a much later diagnosis. We are traveling back to the Cleveland Clinic this month to see an adult GI (Dr. Bo Shen) who was recommended to us by our surgeon. I have been most unhappy with the GI we have seen here. I don't know where you live, but definitely go to a large medical facitlity or University settings that are doing research, if you are not already doing so.  The knowledge base is so much greater than a local GI doctor can give you.

Also note that most of the absorption of nutrients occurs in the small intestine as opposed to the colon, where the liquid is removed, however, if some small bowel was taken in order to create an internal pouch or was lost through surgery this could affect absorption issues, but I am not hearing you say that he is losing weight or showing any other symptoms that would indicate a nutrition problem.  I would also be on the look-out for signs of depression which also can also present in  ways similar to those that you have described.  This is an extremely tough thing to go through and to adjust to. My daughter also suffers from depression . Please tell him to keep demanding good treatment--I know that this in and of itself is very taxing, , but the more educated he is about this illness,  the better questions he can ask , which will result in more information that he will get.  He is very fortunate to have you as an advocate for him, but this role too can be stressful and equally as taxing, so stay strong.

Goodluck and I will pray that you are both lead in the right direction.

[ggreg]

The only thought that comes to mind is deficient nutrient absorption.  The colon absorbs lots of nutrients.  Since it is gone, his docs should have advised him on a special diet.  They also should have advised him of possible negative results from the operation, such as nerve damage.  Major operations take a lot out of a person.  He needs to report his health issues to the doctor.  Perhaps some baby food and milk in the meantime would absorb quicker.