Bleeding again [Update 6/29/09]

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Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 3/21/2009 11:58 AM (GMT -7)   
I'm bleeding again, black stools. I thought something might be up in the past couple days as I could feel my heart rate going up just from walking around. i was down to 17.5 prednisone, I guess I'll have to go back to 25 again and call the GI office on Monday.

The last few days my gut has felt great, I have a good appetite, I just don't understand. Sometimes it seems that I bleed more when I'm having less pain, it's so confusing.

I have no idea what to do....


32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 5mg prednisone. Udo's Choice Probiotics (30 billion). Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!

Post Edited (Rider Fan) : 6/29/2009 9:27:15 AM (GMT-6)


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 3/21/2009 2:08 PM (GMT -7)   
sorry! i know how frustrating it is tihnking you're heading in the right direction and then...
i was feeling a lot better than i have been for a long time...
then i got an infection on my finger- becasue of the 6-MP i'm on they put me on antibiotics which of course sent my gut right back in the wrong direction...

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/21/2009 5:37 PM (GMT -7)   
Thanks. I'm starting to get depressed about this. I'm always too tired and weak to do anything but work and come home. It doesn't seem to be getting any better and it makes me wonder how this is going to end.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 17.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 3/21/2009 5:53 PM (GMT -7)   

Hi,

Hang in there Rider Fan!  Hopefully your GI on Monday will offer you some good advice.  I know how frustrating it can be when you take your meds as prescribed, and then discover they may not be helping as much as you thought.  Have you talked with your doctor about your ongoing extreme fatigue?  Maybe some blood work is in order.

Let us know how things go.....

 

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/21/2009 6:05 PM (GMT -7)   
I'm know I'm anemic, but I'm getting a CBC done anyway on Monday. My last hemoglobin was 10, which sadly I was happy with. So I know why I'm tired, I just need to stop bleeding which is why I started Humira 3 weeks ago.

There isn't much to do at this point besides hope and pray that the Humira works, I believe. Thanks for your thoughts Blossom.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 17.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 3/21/2009 6:21 PM (GMT -7)   

Rider Fan,

Is your doc having you take iron since you're anemic?  If so, it's best to take it with a vitamin C supplement.  Also, for best absorption, don't take any other vitamins at the same time you take the iron---wait at least a couple hours between them.   My GI also periodically tests me for Vitamins A, D, B12, Zinc etc.  Have you ever been tested for any of those? 

I recently called a Humira nurse, and discovered that it can take up to 12 weeks for some people before the Humira is effective.  On the other hand, some people notice improvement fairly quickly. 

Good luck, and my thoughts are with you.

 

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/21/2009 6:30 PM (GMT -7)   
I thought I was feeling better from the Humira, so I started to reduce the pred.

Good advice about the iron but...... I should really put this in my signature already, but I've tried every possible iron supplement and they are all terrible for my gut. So unfortunately, I can take iron. :(

I was tested for B12 last spring and it was normal. I was low on D, so I've been taking 1000mg of calcium citrate and 1000 units of vitamin D3 every day since then.

Ya I know about the 12 weeks. I think if it doesn't kick in by then I'll need surgery. Except in June my wife is due with our first child so that timing really sucks. I don't know how that wold work out....I'm just hoping the Humira helps....

I've been following your post about that rash, I hope that resolves for you. Has the Humira helped your crohn's symptoms?

Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 3/21/2009 7:01 PM (GMT -7)   

Mike,

Bummer about you not being able to take iron.  I'm anemic at times, and borderline at other times.  I'm supposed to take iron regularly, but it sometimes also bothers me (stomach ache etc.)---so I tend to go back and forth between taking it and not taking it.

CONGRATULATIONS on you soon become a daddy!  So sorry you're having all these problems at this time.  I'm sure that the stress of your condition AND the stress (yes, excitement is also a stressor) of having a baby isn't helping your Crohn's. 

Hopefully you are being good to yourself and trying to relax, laugh etc. in spite of all this!  Even when you're fatigued, sometimes watching a funny movie can help a person feel better.  Also, even go outside in your backyard and spending some time with nature (watching the birds; taking in some deep breaths of fresh air; etc. can improve ones mood). 

Thanks for your comment about my rash.  Fortunately, it's not that bothersome.  It's just that I like to get at the bottom of things and understand what is happening and why---particularly when we are suppressing our immune systems with these meds.

As for whether or not the Humira is helping, I don't know.  Since I generally don't have D, there's not an easy way to tell.  I'm having my doubts, though, as I recently had to go to the ER for a partial bowel obstruction (after being on Humira for about 10 weeks).  Also, I recently noticed I had passed some blood during a BM---this scared me quite a bit, as passing any blood is a VERY rare thing for me.

Thanks for your communication, and keep us posted, OK?

Cheryl

 

 

 

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/21/2009 7:11 PM (GMT -7)   
Will do Cheryl. Thanks for the thoughtful advice.

I know what you mean about not having D making it hard to tell how you are doing, I'm the same way. I don't have D and don't get much pain either, other than bad gas pain sometimes. It's always bleeding with me, and weight loss.

Sorry to hear about the partial obstruction, I know that's very painful. I'll keep you posted, you take care.

Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 3/22/2009 12:38 PM (GMT -7)   

Hey Rider,

Sorry to hear you are still having problems with the bleeding.  Maybe your GI will increase your Humira to once/week, just a thought!  I do know though that it took a few months before I saw any results, and I have just started to have Humira weekly.  Lets hope that it heals your problem, and maybe one more blood transfusion will perk you right up on your road to recovery.  Soon you won't have time to be sick, you will be busy enjoying your new baby.

Take care,

Julia

 


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/22/2009 1:01 PM (GMT -7)   
Hi Julia, good luck with the once a week Humira, let us know how it goes. I was going to ask about once a week too, I'm thinking they probably want me to give it a few months at bi-weekly first.

take care,
Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 3/22/2009 1:52 PM (GMT -7)   
I have been bleeding fresh blood none stop since October last year..
I feel that i worse than the pain, seeing fresh blood just kills my little soul :(

I am very thankful though because I never need blood infusion just iron :)
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 3/22/2009 2:07 PM (GMT -7)   
I get iron and B12 shots once a month and they are wonderful!! I don't know how I survived without them. Then I quit bleeding and didn't really need them very much. Now just once every three months or so to keep steady. Have to admit I do sleep more than used to.

Hope they treat you well and the Humira works for you. Keep having hope because there seems to be another drug trial around the corner all the time. (Just have to get around that corner)

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/22/2009 6:16 PM (GMT -7)   
Thanks. :)
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/23/2009 9:42 AM (GMT -7)   
I got the result of my blood test. It was 8.1, the lowest it's ever been. So I guess I'll be going for blood transfusion #4.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 3/23/2009 8:31 PM (GMT -7)   

So sorry to hear that, Mike!

Take care and please keep in touch.

Cheryl

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 3/24/2009 7:09 PM (GMT -7)   

Hi Rider,

Well lets look at the bright side, you will feel better and have more energy.  If the Humira helps you, this could be the last transfusion for awhile.

Keep smiling,

Julia

 


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 3/25/2009 6:54 AM (GMT -7)   

Boy how I can relate to this thread. Last week my hcb was 9.7 but at least I was holding my own. Then I began having multiple bloody stools big time! I was losing 1/4 pt of blood each time. 24 hours later I was at 7.9 hgb. They gave me 2 units of blood and after I took 3 dose cups of Pepto Bismo, the bleeding stopped. I see my Hemotologist Thursday (tomorrow) to get another Iron infusion to maybe get me up to the 10.0 or above region. Tuesday my G.I. will scope me again to see where I'm bleeding. If it's the Crohns, then he'll probably put me on Humira.

It's sure hard to remain positive after all this.

Dave D


Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Had cataract surgery on June 05 on bad eye. Eye returned to a correctable visionary level of 20/50. 11/08 had reaction to Remicade; trying to keep going with Imuran and Pred. Corrective eye surgery and Fresnel prism lense corrected that eye from turning out. It worked. Double vision stopped. Eye is back to work except far poorer vision than the other.  Life looks fairly good (literally) today.
Married with 4 grandkids.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/25/2009 8:08 AM (GMT -7)   
Good luck Dave. I'm getting 2 units on Friday. Yes, I'm trying my best to be positive, but my flare is almost a year old now and it's getting hard.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 3/31/2009 10:18 PM (GMT -7)   

Hi Rider,

Just wondering how you're doing after Friday's blood transfusion.  Hope you're doing OK!!

Cheryl


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/1/2009 7:31 AM (GMT -7)   
Thanks for thinking of me Cheryl! The transfusion went fine, I have much more stamina than I did last week, that's for sure. I seem to be holding my own so far, no noticible bleeding (ie. no black stool) since the transfusion. My gut symptoms seem pretty good too, I did a Humira injection on Friday as well. Part of me wishes that I could do another on Friday, but I'm on bi-weekly.

I get my blood done on Monday, I'll update on my levels.

I hope you're keeping well Cheryl. How are you?

Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/1/2009 9:29 AM (GMT -7)   
Hey Mike,

I like you can't take oral IRON supplements, but I get IRON infusions when needed and they help alot. I just wondering why they give blood transfusions instead of giving you a IRON infusion? Just curious and good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/1/2009 10:24 AM (GMT -7)   
Hi Nanners. I get blood transfusions because it takes a few weeks for the iron to boost the blood, and my hemoglobin was already at 8 and dropping.

I've had 2 venofer transfusions and they don't agree with me either. They seem to make my blood pressure go down, I passed out after one. I think they were 300mg transfusions, they took about 4 hours. Maybe going with smaller ones would work, I don't know...
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 4/2/2009 7:28 AM (GMT -7)   

Hi Mike,

So glad to hear that you're feeling better after your transfusion and Humira injection---let's hope it lasts for awhile!!

Nanners---Glad you brought up the question about iron infusions, as I also wondered about that.  I wasn't sure whether or not a person could simply get an iron shot (similar to a B12 shot).

Mike---thanks for asking about me too.  Yesterday, I had a bad afternoon & evening; as something I ate gave me lots of intestinal distress.  But I'm feeling better this morning.  I don't want to hijack your thread, so will do a new post today on "Humira & food sensitivity".

Hope you continue to do well, and I'll follow your thread for future postings from you on how you're doing.

Take care---

Cheryl

 

 

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 4/2/2009 7:44 AM (GMT -7)   

After my 2 unit transfusion, my hgb went from 7.9 to 9.1. So, I went back for an iron infusion  (2,000mg). My guess my hgb is now somewhere better than 11.

Now that it has been 4-5 days since the infusion, I'm good to go.

Dave D


Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Had cataract surgery on June 05 on bad eye. Eye returned to a correctable visionary level of 20/50. 11/08 had reaction to Remicade; trying to keep going with Imuran and Pred. Corrective eye surgery and Fresnel prism lense corrected that eye from turning out. It worked. Double vision stopped. Eye is back to work except far poorer vision than the other.  Life looks fairly good (literally) today.
Married with 4 grandkids.

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