Tips please - recovering from blood loss

[alexandros8]

Hello community - it’s been some time since I’ve posted. I’ve been in remission for many years with the help of Remicade until very recently. Unfortunetly the skin doctor found some melanoma early this year and we made a decision to stop Remicade due to the ties to skin cancer. Cancer was removed completely with no major issues - just need to get checked very often now and be more mindful about being in the sun. At that time I had a colonoscopy and all was clear - no disease! I’ve historically had an aggressive form of Crohn’s (ileocolectomy in 2009) but we decided to try going medication free for 6 months. Unfortunately the colonoscopy at that time (now 6 weeks ago) showed new signs of disease so I have started Entyvio.

Last week I had blood in my stool for the first time in my history. It started as a little before bed time so I went to sleep. I woke up at 3am with an enormous amount of blood. I then passed out 3 times and my wife needed to call 911 to have paramedics get me out of the house and to the ER.

The bleeding stopped but after multiple tests (another colonoscopy and an endoscopy) no exact sign of where I bled from... which is frustrating. I’m doing the camera pill test for upper GI next week. The going theory is an ulcer bled out and healed quickly which sounds common- though very new (and scary!) for me.

I’m now on prednisone, iron, 6MP (which I’ve been taking for 16 yrs), and will continue Entyvio.

My hemoglobin dropped from 14.8 (baseline at colonoscopy 6 weeks ago) to 10.1 while in this hospital this week. I did not need a transfusion as they say they require those at +/- 7. Got home Thursday but am now exhausted all the time, have recurring headaches, and sleep a ton. I’m in pretty good shape having just done a sprint triathlon two week ago but now can barely make it up the stairs without my heart racing.

I’m looking for advice and what to expect over the next few weeks and months:

- how long does it take to recover?
- anything I should avoid??
- anything more I should do?
- success stories?

Would love to hear anything and everything. The last time I posted here was in recovery for my ileocolectomy (almost 9 yrs later and married with 2 kids now!). I feel the need to apologize for going silent while in remission- I should have stuck around to support! Now back here - I pledge to be more active. I have some great stories and clearly some not fun ones - I know I can help others too.

Looking forward to hearing from you all and being part of this great community.

~Alex

 

[Guerrero]

Hi Alex.. Something very similar happent to me last year... had blood in my stool, then after 10 hours i passed out in the street and an ambulance bring me to the ER... my hemoglobin had dropped from 14 to 8... i stayed almost 2 weeks in the hospital and did all the exams and they found out important inflammation and thickening in my ileum (even if i was on humira..). So the bleeding came from an ulcer there..

I can exactly understand where you are now.. all kicked me down too... lost a lof of weight as i couldnt eat solid food at the hospital.. and it took weeks to fully recover. The prednisone worked well to stop the bleeding and ease the inflammation but was hard for all the other side effects.
I also started entyvio, took time to fully kick in but 7 month later i did another endoscopy which showed most of the inflammation disapeared thank to entyvio.

The advice i can give you in terms of diet is to avoid food and beverages that could irritate your bowels (spicy food, high fiber, alcohol).
Think positive, you'll make it!

Dont hesitate to send me PM if you need.

Hope you'll feel better soon.

 

[alexandros8]

Thanks so much - really appreciate your response. Did you have a lot of fatigue from the blood loss? That’s my chief complaint right now... I can’t climb a flight of stairs without getting exhausted!

 

[Guerrero]

Yeah I was very weak too... and so anxious I would bleed again. Thank god all went well and i regained weight and energy after a month or 2...

 

[Scipio]

I was first diagnosed with Crohn's while they were looking for the reason why I had suddenly come down with severe anemia. There was no visible blood in the stools. But a whole lot of blood disappeared somehow.

I had transfusions to bring my hemoglobin up to about 9, and after that I took iron pills together with vitamin C each morning before breakfast to eventually get it back up to normal. The pills did cause some mild nausea, but iron absorption is better on an empty stomach.

Also, if you take iron pills, do not use the slow, coated, or delayed-release type. Nearly all the iron absorption takes place in the duodenum - just south of the stomach. So those coated or delayed release formulations are mostly a waste, because they release their iron when they are already too far downstream to do much good.

If you cannot tolerate the iron pills, ask your doc about the possibility of iron infusions. They are easier on the gut.

 

[Guerrero]

Ah yeah i also did at least 2/3 iron infusions over the next 2/3 month after the bleeding. I guess it helped a lot.

 

[Jabee]

I can third the iron infusions. When I had severe crohn’s in my duodenum my hemoglobin went below 9. I didn’t get transfusions but did get iron infusions and then had to again a few years later. They’re very effective. My biggest problem with the anemia was the inability to do anything without getting winded so I understand completely. For iron I now take ferrous gluconate, uncoated, and it doesn’t bother my stomach.

 

[Gabriel89]

Hi,

I got blood transfusion when it was very severe, (twice in my life so far) that helped me obviously very quickly.

When it was not that severe (but severe enough not trying to walk around even the house LOL) i had iron injections. It is very helpful. I dont remember the dosage but helped a lot.

For me it took a good month to feel better and be able to function "normal" without fainting or something. And of course the ulcer must be healed. If its still bleeding a bit its not going to improve.

Hope this helps

Gabriel

 

[Kas8173]

I had a very similar experience about 1.5 months ago.

I didn't feel unwell at the time. My Crohn's diarrhoea was only mild and occasional, I also had a bit of occasional spotting blood on toilet paper for a few months. My haemoglobin had been between 95 - 110g/L for around 6 months, so slightly low but not too low.

One morning I suddenly had severe diarrhoea with a lot of blood in it. I must have gone to the toilet about 6-7 separate times and lost about 100-200ml of blood down the toilet each time.

I phoned 111 (this is a service in the UK which gives medical advice in non-emergencies) I was on the phone describing my symptoms and suddenly my ears began to ring and my limbs felt very weak, I said I was about to pass out and the person on the other end of the line was like "Ok, I'm sending an ambulance".

I pretty much collapsed on the floor at that point, I didn't loose consciousness but was close to. I laid on the floor for about 20 mins and began to feel a bit better. I got up and looked in the mirror and my face was white, my lips were not red and were the same colour as my face.

The ambulance took around an hour to come. When they arrived my blood pressure was very low and I almost passed out again on the way to the hospital.

When I arrived I was promptly put on IV metronidazole and fluids. My haemoglobin was about 85. They carried on taking my bloods every few hours and eventually my haemoglobin dropped to 74 and I was given two units of blood and an iron infusion.

I was also given hydroxycortisone in hospital. The bleeding stopped of it's own accord and I was in for 3 days.

Immediately after the first blood transfusion I felt much better and the colour came back to my face.

My haemoglobin was 95 on discharge and a repeat blood test after a month it was up to 135, so the iron infusion must have really helped replenish my iron stores.

I did begin to feel better, but now my treatment is being stepped up as my Crohn's is not really under control.

I had an MRI a few weeks ago that showed multiple lesions in the small intestine and inflammation in the large intestine. The doctors think it was a spontaneous bleed from one of the lesions.

I would recommend an iron supplement called spatone. I don't know if they sell it in the US but they have it here in the UK. It's basically a sachet of water with a high amount of iron dissolved in it. It doesn't give me any of the gastrointestinal upset or black tarry stools like I used to get with the ferrous sulphate tablets. The absorption is much higher because of the form of iron it has in it, and also because it's a liquid.

If you didn't have a transfusion then the anaemia will probably be hitting you quite hard and make you really fatigued. I would see if you can get an iron infusion.

Iron infusions take a few weeks to a month before it starts to help. Your body needs time to make new red blood cells out of the iron. Iron supplements can take 2-3 months because you can only absorb a small amount of iron per day.

Also, if you take iron pills, do not use the slow, coated, or delayed-release type. Nearly all the iron absorption takes place in the duodenum - just south of the stomach. So those coated or delayed release formulations are mostly a waste, because they release their iron when they are already too far downstream to do much good.

I completely agee with Scipio here and have always thought the same thing but never actually heard anyone else say this, so it is good to know.

Keep up your vitamin D levels as well with supplements and sunshine. Vitamin D helps to lower hepcidin levels which is a protein in the body that inhibits iron absorption.

Also make sure that your vitamin B12 and B9 are kept at good levels which are used in the production of new red blood cells.

 

[hikerneil]

I will echo the comments above about the power of an iron infusion. My Crohn's symptoms (pain, diarrhea, etc) have been absent for years since I had bowel resection surgery in 1986. However, recently I began feeling run down and my doctor discovered low red blood count and low iron level. My GI performed a colonoscopy and it showed I do have some strictures that are bleeding. I had an iron transfusion and I felt great about 10 days after the infusion. (I felt so great that I was able to backpack 75 miles and hike to the top of 14,500' Mt Whitney with no issues.)

Now I am faced with decision - what do I do now???

I am guessing my iron and red blood counts will begin dropping again, and that I will eventually feel fatigued. I have not yet addressed what to do with the return of my issues in my gut. I have lived with no pain for so long, I don't want to even think about it....... The thought of starting one of the biologics scares me.

If I had my choice I would just keep doing iron infusions, but I hear that is not an option as it will damage your liver eventually.

ugh

 

[Guerrero]

Hi hikerneil,
Yeah you right it would be great if iron infusions only were the solution...
What is your treatment now?
I was in a similar situation 5 years ago with my hemoglobin that keep dropping every 2 months and i was scared of biologics so i was on azathioprin only... after my scopes showed stricture i decided to go on with humira instead of risking a surgery... humira didnt work that well though. I switched to Entyvio then that seems to work much better for me to keep my hemoglobin high.

 

[tots]

A few months ago I was in the hospital with a GI bleed, my hemoglobin went from 15 to 7. I had a blood transfusion. lost 13 lbs. I was a mess. My Dr seriously put me on Flintstones vitamins with iron and said I would never go back up. I am now at 12.9 !!


Lauren

 

[aypues]

Yikes that sounds scary. I got off iron pills awhile back, too much GI upset and they take a long time to work. IV iron is the way to go like others have mentioned. I've taken most all the IV preparations, but there best for me has been Feraheme, 510mg x 2. I started off on Venofer but it takes 5 trips of 200mg to get the same total dose. Injectafer is a higher dose 750mg x 2 but commonly gives hypophosphatemia, and gave me problems with too much iron (temporary arthritis). Good luck!