The usual reversal problems but anemia as well?

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darcy1
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/23/2010 7:12 AM (GMT -6)   
Hello,

My 66 year old father had ileostomy reversal in March after having stage IIIB rectal cancer surgery in November. After reading these posts about the excessive bm's... it seems he is not alone. In addition to the 20X he runs to the bathroom each day he is severely amenic. His lab results have been tanking over the last 2 months - ever since the surgery. On his last follow up two weeks ago with his surgeon they found bleeding and inflammation near his rectum. He was given 2 antibiotics to clear the inflammation, but there has been no change in his condition since his rx's ended a few days ago. I sent him to a hematologist who said that he has 'chronic illness anemia' and told us to go back to the surgeon. He was told to discontinue the iron supplements he was taking because even though his hemoglobin is low his 'iron stores' are high. He fell twice in the middle of the night last week and is very fortunate he didn't break anything other than his ribs. I'm very frustrated that there isn't anything being done to help him. He returns to his surgeon on Tuesday so I am writing to see if anyone else has gone through this so we are armed with the right questions.

I will definitely start him on a food journal today and make some diet modifications based on what I've read here. Thank you for any advice you can offer.

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 5/23/2010 7:22 AM (GMT -6)   
Did he have a resection or a jpouch or colonic pouch?

Is he taking imodium or lomotil to reduce his frequency?

Is he taking metamucil to bulk his stool?

He should probably be under the care of a GI who is experienced with follow-up with patients of his history. Surgeons usually don't treat CR patients after the surgery for the continual frequency issues etc. The GI is also more experienced with the chronic illness anemia although I wonder if your father's falls have anything to do with dehydration and not anemia.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/23/2010 7:22 AM (GMT -6)   
I am sorry your father is going through all of this!!!

Has he been running a fever? That could point to continued inflammation.

Has he been tested for C-Diff? Abdominal surgery and antibiotic use can exposed a person to it:(

Did he have any part of his rectum/colon removed with the cancer?

Has he tried Imodium to slow down the bowels? Did the doc give any instructions for it?

Welcome to the forum, too!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


darcy1
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/23/2010 7:32 AM (GMT -6)   
Wow... I didn't think I'd have such a quick response... thank you. Hopefully I can answer the questions. His cancer was so low in his rectum that the nurse said that if he had had any other surgeon he would have had a permanent bag. I thought I knew a lot about his condition, but I'm not sure how to answer some of the questions about the pouch and resection. He did have some of his colon/rectum removed but we were never told how much (or at least I don't remember if we were). I think the bag was called a j-pouch. We have not been referred to a GI specialist and will ask for that on Tuesday. Yes, my dad takes immodium and metamucil - but it doesn't seem to be helping. We were going to see if he should switch to lomotil Tuesday. He has had a fever with elevated platelets, but no one has tested him for C-Diff that I know of.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/23/2010 8:13 AM (GMT -6)   
See if you can find out exactly what his surgery entailed. A jpouch is not a bag but an false rectum made from the small intestine. We could give you better advice knowing what his situation is. You might ask the GI for codeine to slow his frequency. It works much better and since his is so high, 20+ per day, I doubt lomotil will be any better.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


darcy1
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/23/2010 9:39 AM (GMT -6)   
Hi,

His surgery involved removing part of his colon and rectum. There was very little left of the rectum to reattach, but they were able to reattach. He had a temporary ileostomy bag from November to March when it was removed. So, there is no j-pouch... I was confused. He does take codeine. He told me this morning that he does not take immodium anymore... he was put on a prescription diarrhea med, but I don't know the name right now. I will have him ask for a GI consult when he sees his surgeon on Tuesday, but I'm worried most about his anemia right now. Have you ever heard of anemia becoming a side effect after this surgery?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/23/2010 12:17 PM (GMT -6)   
Since it's chronic illness anemia, yes it can appear after surgery. I had chronic illness anemia that was diagnosed after my surgery. Has he had chemo too? I don't think any of this is abnormal but he should be able to get some relief from his frequency through working with the GI. He might try eliminating all sugar from his diet too and don't forget that fruit juices are high in sugar.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


darcy1
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/23/2010 1:46 PM (GMT -6)   
Hi Sue,

Thanks again for the response. Yes, he went through chemo and radiation last April and May. He almost finished his treatments but had to stop because my brother was killed in a motorcycle accident. My dad ended up in the hospital for a month last May initially because of dehydration, but things went from bad to worse and he ended up on a ventilator. He worked his way back, got off the vent, learned how to walk again and was strong enough to go through both the cancer surgery and the take down surgery several months later. Now, he feels worse than he ever has. I just don't know what to do for him. We were hoping the hematologist would have an answer, but he doesn't. I didn't know that chronic illness anemia could be related to his reversal surgery - so I'm in a way glad to hear that.

Did you ever have to have transfusions? Did you treat your anemia with anything other than dietary changes? How long did it take before your labs leveled out??? Thanks again for any info.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/23/2010 3:39 PM (GMT -6)   
Wow, you and your dad have been through a lot and I can understand you worry and desire to see him improve. I did not have transfusions but did have to take a liquid iron supplement for some time before reversing the anemia. Due to your dad's history it may take a while. If he can get a handle on the frequency and possible dehydration due to frequency he should start to improve. Keep us posted.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/23/2010 3:53 PM (GMT -6)   
Sue, do you know what the normal dose/frequency of codeine would be to slow the frequency?
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 2 Tsp. (4/day),, Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 5 mg (1/day), Florinef .05mg (1/day)

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