Feeling so down.

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Regular Member

Date Joined Jan 2003
Total Posts : 492
   Posted 5/10/2010 11:50 AM (GMT -7)   
I have been living with crohn's for some time... 28 years. The first 6 years I had 3 resections and then.. almost 15 good or maybe I should say, as good as they could be with crohn's years without much medication and no surgeries. In 2005 once again I found myself under the knife.
In all of these years I never once had blood issues or internal bleeding or needed transfusions.. not one single time.

Well, my luck ran out I guess. Since November I have had to have blood twice with my hemoglobin being at 7.1 the first time and 8. this last time which was just a couple weeks ago. I am testing positive for blood in the stool which to my knowledge is also a first for me. In years past it has always been obstructions from strictures that laid me out for weeks and sometimes months at a time.

I guess I am just wondering was I really really lucky for all those years or has something changed in the way my crohn's disease has come back this time. My GI says more than likely it is the small bowel that is in trouble... he did scope my stomach while I was in the hospital for the 4 days last week receiving blood and iron through IV, and he said everything looked good. I see him again tomorrow and I am quite sure he will want to schedule a scope down below.

I suppose what has me worried is, if nothing shows inflammation in the large bowel, how in the world are they gonna find the source of my blood loss?

I know so many of you have the bloody stool issues and I so wish you might tell me what they do to help it. I do not want to live the rest of my life so tired I stay in my bedroom 2/3rds of each day. I hate, absolutely hate watching blood dripping from a bag into my body. Maybe that is a stupid thing to admit to but it is what it is.

Anyway, your thoughts and experiences might be able to help me understand why things have changed and/or what I might be able to expect.

As always I appreciate everyone's thoughts and opinions.

Much thanks in advance.. Lynn
Dx'd 1983 Crohn's Disease, COPD 2000, Psoriasis 2002, Fibromyalgia 2005 along with Chronic Inflammatory Disease 2005.
4 resections 83, 87, 90 and 2005.
Currently taking Humira, Lomotil, Elavil, Sinemet, Flexeril, Nuerontin, Advair, Abuterol, MS Contin, Dilaudid and Xanax as needed.

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 5/10/2010 11:58 AM (GMT -7)   
Wish I could help you, Lynn... I hope the doctors are able to find out what's going on (I'm sure they will... hang onto hope)...

I'm sorry you're going through this... *Hugs*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/10/2010 12:15 PM (GMT -7)   
If nothing shows on the c-scope, ask for a pill camera test. That shows areas in the small bowel where the scopes can't reach.

I had a nearly 20 year remission med free, will NEVER be without maintainence meds again. I ended up in emergency surgery having a foot of intestine removed. Please get back onto maintainence meds so you can avoid these issues again in the future. Hope they figure whats going on soon, and get you feeling better soon too.

Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Apr 2010
Total Posts : 72
   Posted 5/10/2010 3:00 PM (GMT -7)   

I agree, the blood from your stool maybe coming from the small bowel. The small bowel (as you probably know) is the longest part of the bowel. So even if the large bowel looks OK and the a gastric area looks OK too, then there leaves the small bowel. A pill cam is probably the way to go. What I have learnt, is that if there is a positive blood result in the stool and the stool is dark in colour, then the small bowel is where the blood is coming from. Bright red blood would indicate the large bowel is where the bleeding is coming from. Go with your GI. See if a pill cam is the way to go. Your HB levels definitely indicate you are loosing blood from somewhere and this can be very dangerous. I know having a transfusion doesnt look pleasant, but you need to replenish what is being lost. Im guessing you were probably feeling fatigued with a HB that low. Im also guessing that you felt somewhat better post the transfusions. In any case - find out where the bleeding is coming from and stay advised by your GI. Hoping you get to the source of the problem soon. Take care.

37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil

Veteran Member

Date Joined Nov 2007
Total Posts : 4412
   Posted 5/10/2010 5:50 PM (GMT -7)   
Hi Lynn,
Several years ago, before I had a Crohn's diagnosis, I was admitted to the hospital with a hemoglobin of 8. The colonoscopy, endoscopy, and barium Upper GI test all came back completely normal and they couldn't find the source of my blood loss. They gave me an iron infusion and sent me home. about 8 months later, it happened again, and then they did the camera swallow where they found ulcers in my small intestine, and eventually the Crohn's diagnosis. If you have strictures, you should ask for the dissolvable camera so it doesn't get stuck. I think it's important to find out where the blood loss is coming from. Try to stay hopeful. You may get on good meds and go back into remission. Good luck and big hugs to you.
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics

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