Multiple blood transfusions. Pouch failure?

Dr. Remzi is one of the most experienced JPouch surgeons in the world, based on my research. He specializes in failing Jpouches. He is also a wonderful man. He did all of my surgeries and he was awesome.

I am sorry to hear about your plight! I would suggest seeing Dr. Remzi as well.

Are you having any bleeding in the stool? And are you eating a good amount of protein in your diet? And have you gotten a bone marrow test done?

Is there any reason or reasons in particular that you are not ready for a permenant ostomy?

If the blood is coming from the pouch or near the pouch they should be able to find the source. If it’s coming from higher in the GI tract then pouch removal might not help at all. If it were my pouch I’d find a second (perhaps academic) gastroenterologist for another approach to finding the source of the bleeding, and to make sure other possibilities (e.g. red blood cell destruction) have been properly ruled out. Perhaps Bo Shen, as long as you’re willing to go to New York? That much bleeding shouldn’t be a mystery, I think, and surgery rarely fixes mysterious bleeding.

@Mary2017 No bone marrow test has been done or suggested. As for blood in the stool, I will be fine for a while then see only blood for a day or two and then I can feel that my hemoglobin has dropped. I forgot to mention that I have to be on Eliquis, blood thinner, due to previous DVTs. As for the permanent ostomy, I had a terrible time with the temporary one back in 1991 when I was 21 years old. They actually had to do surgery to move it to the other side and I had problems there also. I was miserable and cried almost every day.

@Scott F I need to talk to my GI again and get copies of his notes. He may have mentioned where he thinks it’s coming from. And I also think that my hematologist did that test to check for red blood cell destruction, as well as many other tests. I believe he has tried everything he can think of, even if it was a remote possibility. He has been very thorough.
I will see what I can find out about Bo Shen, as I have seen him mentioned several times on the board. Thanks so much for replying.

@beachlove posted:

@Mary2017 No bone marrow test has been done or suggested. As for blood in the stool, I will be fine for a while then see only blood for a day or two and then I can feel that my hemoglobin has dropped. I forgot to mention that I have to be on Eliquis, blood thinner, due to previous DVTs. As for the permanent ostomy, I had a terrible time with the temporary one back in 1991 when I was 21 years old. They actually had to do surgery to move it to the other side and I had problems there also. I was miserable and cried almost every day.

I am surprised the hematologist has not mentioned a bone marrow test. I would definitely suggest that to rule it out. I was in the same situation as you and my hematologist suggested we do a bone marrow test, it ruled out cancer. I think you should suggest that to the doctor that is in hematology.

Yeah since you have blood in the stool at any point, I would definitely try to get that under control. If it does not stop bleeding, then that means that something is wrong and it needs to be addressed not ignored. I think an ostomy is definitely in the future if the bleeding does not stop. SInce you will be going on blood thinners, the bleeding will be worse- trust me on that. It may be safer to get an ostomy just to end the plight.

If you’re seeing bright red blood in the toilet (which I *think* is what you’re saying) then there’s not much of a mystery about why your hemoglobin is dropping, nor any need for a  bone marrow evaluation or hematologist. It could be worth carefully reassessing your Eliquis dose, because this much bleeding is really an unacceptable side effect, but it can be very difficult to anticoagulate enough without overdoing it.

I would not give up my pouch unless I knew specifically that it would cure your issue!

3.5 years ago, after my emergency takedown redo, I received three transfusions within 7 days due to critically low hemoglobin. They did every test to pinpoint the blood loss, but could not, only concluding of occult blood in my stool.

Miraculously, I was discharged with stable hemoglobin, and now only receive the once a year iron infusions.

My point is that, consulting a surgeon/Remzi is for surgical purposes; that’s what they do.  I would want to know what is the therapeutic value of being cut open.  What is the fix? From what you describe it seems like a massive undertaking to maybe fix the problem. I would be very weary of this course of action.

@Scott F We actually stopped the Eliquis to see if it would make a difference. It did take longer for the bleeding to return, but it did return. And after three months off of the Eliquis, I ended up in the hospital with a DVT.

@New577 I’m sorry you went through that. I’m glad you no longer need the blood transfusions. I will definitely do everything I can to figure this out without surgery. I appreciate your input.