HealingWell
Search Close Search
☰

Bleeding again [Update 6/29/09]

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/6/2009 6:09 PM (GMT 0)
So here's an update. 1 week after the transfusion by hgb is 10.5, up from 8.1. Will check again in 2 weeks. Stay tuned for the next episode of Mike's Chronic Bleeding Adventures.
Posted 5/4/2009 4:36 PM (GMT 0)
I have an update. My hgb is still at 10.5. So this isn't great but it's not bad either. It's the first time since last November that it has managed to stay level on it's own for this long without a blood transfusion. I'm now down to 12.5 prednisone. Hopefully the Humira will continue to kick in over the next few weeks. Thanks for everyone's support so far.

I'm still too chicken to try iron pills again, but I'm eating chicken livers every day with a vitamin C tablet. Perhaps I will try something called Proferrin that someone here recommended but I haven't decided yet. I've been dead tired the last few days but hopefully it's just becuase of the cold a have.

Mike
Posted 5/4/2009 7:24 PM (GMT 0)
Rider Fan: I've had time to read a few more posts & happened to finish reading yours. I'm so sorry to hear you've had more than your share of problems with Crohn's. 10 yrs & you are still having bleeding problems. Yet you still joke about it! And you are just a young fellow as well. I have great admiration for your strength & stamina & envy you for your courage to face each day with such a positive attitude. Sometimes that has got to be difficult, Mike. It scares me to realize that my g'son has soooo many more hurdles to encounter throughout his lifetime. I sure hope he can face them as well as you & others on this forum.

I'm hoping Curcumin 95% will help my g'son. Have you thought of trying it yourself?
Posted 5/4/2009 8:06 PM (GMT 0)
Your post on Curcumin was the first I've ever heard of it, so I'll have to look into it.

And don't fret too much about me, I haven't been bleeding the entire 10 years, just the last 1 (and 10 yrs ago for a while when I was first dx'ed). Once your g'son recovers he may have many many symptom free years, as I expect to have....
Posted 5/4/2009 9:45 PM (GMT 0)
Well it's definitely a good sign that everything is leveling off without a transufusion, hopefully it stays there. I was the one who mentioned Proferrin, I've been on it for a while longer and it seems like it's reacting really well to my body, personally. No bad side effects at all but I may be going off it because I've been really broke and haven't been able to afford the pills (lol). Hope you continue to do better!
Posted 5/5/2009 3:17 PM (GMT 0)
Boy you aren't kidding. I had my pharmacy order some yesterday, 30 pills for $18. Oh well, if it helps it's worth it.
Posted 5/5/2009 7:27 PM (GMT 0)
Ouch! It is totally ridiculous lol. Let me know how you react to them, I hope you don't have a bad reaction since you don't seem to have the best luck with iron. They say they're as effective as transfusions, and they're naturally derived so hopefully they won't give a reaction. Good luck!
Posted 5/18/2009 9:06 PM (GMT 0)

Hi Rider,

Good to hear from you again, and glad you didn't need another transfusion!  I'm also anemic, but only slightly.  I'm supposed to take iron regularly, but I can't seem to tolerate it either.  So, I am VERY curious as to how the Proferrin works for you and if it bothers you at all.

I sure hope the Humira ends up working for you too!!  I've been on it since December, yet I'm currently having more problems than I've ever had before.  I fear (as does my GI) that the Humira isn't working.  So tomorrow I'm having a colonoscopy & endoscopy to see what's going on.  Please keep us posted and let us know if the Humira helps you, OK?

Take care---

Cheryl

Posted 6/1/2009 6:37 PM (GMT 0)
Update today. My hgb is now 11.3, up from 10.5 a month ago. This is the first time it's gone up since last summer. It's now been 9 and a half weeks since my last blood transfusion. I'm down to 8mg prednisone. My gut is actung up a bit lately, so I'm going to taper this last bit very slowly...
Posted 6/1/2009 8:29 PM (GMT 0)
Hi,
I have also been having trouble with bleeding but seems to be a slow leak that we can't find. (I'm not seeing any blood or in stool specimens) My hgb has been as low as 6.3 & iron level 3. Had all the tests & saw hematologist for a year. Had 2 transfusions 06 & 07. Hgb stayed around 9.9 & I was very happy with that. Then dropped again to 7.6 after Hematologist stopped my iron pill to see if I could keep blood levels up. Now I am on Entocort EC which seems to be working & Repliva 24/7 which is an iron pill. My levels are up hgb 12.8 which is unheard of for me.
Good luck & hope things stay up for all of us
Posted 6/1/2009 9:54 PM (GMT 0)
Wow, 12.8. I hope I get there one day! I actually started taking Proferrin on the advice of Valerie. I guess they're helping, along with eating chicken livers. Stay well.
Posted 6/1/2009 9:58 PM (GMT 0)
Rider - You haven't had any bad side effects with the Proferrin yet, have you? I was wondering about that. Glad to hear your hgb is going up though. I feel a lot better too, I'm getting my color back and have tons of energy compared to before, which is great. Hope everything continues to improve!
Posted 6/1/2009 11:18 PM (GMT 0)
I have been bleeding none stop for 8 months, someday's there is no blood but then I just get more D, how lucky am I ;)
But I was so depressed and stressed about all this blood and it was making my life miserable.
So I just stopped thinking about it.

Of course I tell my doc and I tell him if I think it is more than usual.
But there Is nothing I can do about this so I try not to worry and get on with life.

I just get regular Iron infusion's and blood if I would need it.

Cant you get some time off work while you are getting through this or do you have more energy some part off the day ?
When I am like this I do as much as I can while the energy lasts and then I take a good nap.
I am not working at the moment I think I would not be able to stay awake for 8 hours working :S

And about the depression try not to focus to much on this bleeding, I know it is hard. But you will feel so much better.

Good luck hope you feel better soon..
Posted 6/1/2009 11:37 PM (GMT 0)
Rider,
Congrats on getting your hemoglobin up past 11! An increase of almost a whole point in a month without any transfusions definitely seems like a sign that things are going well, even if you're still low.
I've had constantly low hgb for probably over a year now, with the lowest being about 8. After a transfusion and an iron injection, and consistent oral iron supplementation, it's been hovering in the 10-11 range for the past few months. I just started Imuran last month, so I'm getting very frequent labs, and even though I didn't think I was losing much blood at all and found a supplement that didn't upset my stomach, I was always anemic. But last week I finally hit 12 and broke into the normal range! It's still the lowest level that's considered healthy for women, and ideally it'll go up a bit more, but I'm thrilled. My theory is that it's because I started eating chicken livers fairly frequently, and I absorb iron from them more easily than from any pills. Anyway, you mentioned you've been eating chicken livers too, and if I were you, I'd eat them just about as much as you can stand, because I think that's what finally worked for me.
Posted 6/2/2009 1:02 AM (GMT 0)
Thanks Lena! I'm thrilled to have it over 11, even though it should be 14 for a male. Like you, my lowest was 8, I was very tired but still worked full time, but it wasn't fun.

I try to eat 3-4 chicken livers a day, how about you?

Thanks Valerie, I don't think the pills bother me. I've been a little more symptomatic the past few days, but I don't think it's the pills, probably the pred taper.

Iser, I can't seem to tolerate infusion, they drop my blood pressure and I pass out. What kind do you get and what dosage?
Posted 6/2/2009 8:54 AM (GMT 0)

Rider Fan said...
Iser, I can't seem to tolerate infusion, they drop my blood pressure and I pass out. What kind do you get and what dosage?

I am not sure but I am going to the hospital today, I shall ask them..
I never get any side affects and I takes only 15 minutes to do one infusion.
Posted 6/2/2009 2:46 PM (GMT 0)
Awesome thanks!
Posted 6/2/2009 3:38 PM (GMT 0)
I did the iron shots, and infusions for awhile after my last infusion. How are you tolerating the Proferrin
Posted 6/2/2009 4:02 PM (GMT 0)
So far so good I think. No cramps or D or C. Stomach has been grumbling a bit more lately and some gas coming back but it could be because I'm down to 8mg pred. I'm taking 2 tablets a day.
Posted 6/2/2009 6:15 PM (GMT 0)
Hi Riderfan,

Glad you're tolerating the Proferrin so far!  I just went online to check into it, and they say there are 2 different forms---Proferrin ES and Proferrin Forte.  Which are you taking?  I'm curious because I also have problems tolerating iron supplements and would possibly like to try the Proferrin.

Thanks,

Cheryl

Posted 6/2/2009 6:25 PM (GMT 0)
Hi Cheryl! How are you? Are you going to have surgery?

The Proferrin I use just says Proferrin on the bottle, like the one in this picture:

http://www.proferrin.ca/home.html
Posted 6/2/2009 7:42 PM (GMT 0)

Hi Mike,

Thanks for the info on the Proferrin---I'll look into it.

Thanks for asking about me!  I'm actually doing better the past couple weeks---have been able to re-introduce some foods.  My terminal ileum @ the IC valve is very, very narrow and most likely scar tissue.  I will see my GI in week to discuss whether or not I "should" have surgery.  At this point I'm not sure how "dangerous" it is for the IC valve to remain so narrow.  Will need to weigh all and then make a decision.

Keep in touch,

Cheryl

Posted 6/29/2009 3:36 PM (GMT 0)
Here is another update. Still on the Humira bi-weekly and the Proferrin iron pills, down to 4mg prednisone (going down 1mg every 1 week). Hemoglobin is up another .7 this month, now at 12.0. Slightly increased RDW, probably from the anemia? I've gained about 1-2 pounds, now at 132.

I've been somewhat fatigued, but in a different way than when I was anemic, but nothing terrible (kind of foggy maybe?), SOME days I feel pretty much normal! I think more fatgue for a few days after the injection. Also have noticed acne on shoulders and back, pretty sure it's from the Humira. No other side effects that I've noticed.

I shot some baskets in the driveway for the first time in over a year last night, so that's a good sign.
Posted 6/29/2009 6:57 PM (GMT 0)

Hi Rider Fan,

Glad to hear that things are progressing in a positive direction for you!  I've also noticed the fatigue and body aches the first few days after each Humira injection.  My RDW was also high with anemia, so there's probably a link between the two.

Hope your health improves as you continue with the Humira and slowly wean off the prednisone.

Take care,

Cheryl


Posted 7/1/2009 4:02 AM (GMT 0)
Hi Blossom. Sorry for the late reply, my wife delivered our first and only child today at 2:09 AM! Please let me know how you are doing these days, either on this thread or simply email me.

Mike
✚ New Topic ✚ Reply
123