I'm 32 years old. I've had 107 iron infusions since 2020. I've tried about 7 different iron formulas and trying another new one along with nettle leaf tea, but I doubt it's going to help.
I tried Remicaid: failed; Humira: failed. I've been on Entyvio and can't say I'm better off. I had a pouchoscopy in June and it looked good; there were two spots of ulceration but nothing that would warrant such large amounts of blood loss (plus I don't see blood loss like before surgery) I had an upper endoscopy done and got an A+. Nothing to speak of there.
So I've got about 4 doctors now telling me that this must be gynecological. It didn't seem like I had heavy periods but my surgeon said they may be heavy for me. To note: after an iron infusion my next period is exceptionally heavy with clots and sheet-like passings of blood. This last one, I had some serious pain, pain I've never had before, but I had COVID at the same time so not sure if that added insult to injury. The severity of bleeding decreases as my ferritin levels fall. So by time I'm anemic again my periods are light to normal and I have very little pain and cramping. But by that time I get another round of iron infusions I'm heavy (up to 8 days of bleeding) and the next month down to 6 days then the next down to 4-5 and boom anemic again. And so the cycle goes.
I lost my job because of anemia and with so many appointments, infusions, and feeling ill I got approved for disability. This is has literally disabled me.
I see a new gynecologist Wednesday. I have avoided one for a while now because I just wanted to deal with my GI issues and didn't want to deal with more than I could cope with but now that I've been through the ringer, and the GI is no longer the murder suspect, I'm going to a gynecologist my surgeon recommended.
I don't want birth control or IUDs; I have adverse reactions and it upsets the Crohns. I know they have to diagnose my condition, rule out cancer, fibroids, endometriosis etc. but given bad side effects for medications and my personal aversion to more medication therapy (I'm just tired of pills infusions and being medication dependent) what is the probability of surgery? Would the doctor even be agreeable to a hysterectomy (I'm not married; not in a relationship; not looking for a man and not going to have kids) or will I have to continue to suffer?
I'm not actually afraid of surgery in fact if it relieved my problems physically and emotionally, I'm completely on board, but having the j-pouch what are risks to the pouch?
To any women who've had a hysterectomy or ablation how did it effect you? If you had an ablation did it fail? (I'm worried about a uterine ablation failing being I'm younger and the lining grow back and make things worse, and I don't want to have to go through more test/procedures and then just wind up with surgery in the end anyway) I just want this all to end and have my life back.
What would other options are there besides surgery and medication?
Men who've seen J-pouch/hysterectomy/ablation cases what are your clinical experiences?
I'm at my wits end and if I can't stop the anemia, I want to die. I'm giving up. I don't love life anymore.
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I’m sorry you’re dealing with this - it sounds extremely difficult. Have you seen an endocrinologist or hematologist? They might be able to work out the cause of your body’s war against red blood cells. Adding more doctors can be frustrating, too, of course.
@Scott F posted:I’m sorry you’re dealing with this - it sounds extremely difficult. Have you seen an endocrinologist or hematologist? They might be able to work out the cause of your body’s war against red blood cells. Adding more doctors can be frustrating, too, of course.
I have a hematologist; he also believes it's gynecological.
Bummer. One area of caution to consider is that surgery often doesn’t eliminate the need for medication. It sometimes does, of course, and I chose a J-pouch in part so I could stop taking prednisone (and I’m glad I did), but I need other medications now. At a minimum it’s worth asking the gyn what medications might be needed after surgery. I hope you find relief!
You may want to search the Women’s Health forum for topics on hysterectomy. I believe there have been a number of members who have had a hysterectomy post j-pouch. I think the main issue is adhesions that may be present from prior surgery that complicate the surgery.
Jan 
I so sorry you are going through this and your quality of life is not good. I also have chronic anemia from what my GI suspects is Crohns and I need iron transfusions. It seems that your periods are complicating your anemia. One option (although I definitely understand you don't want more meds) is to take a low-dose estrogen-progesterone tablet daily and stop your periods altogether. I did this for many years because my periods were so bad and the hormonal fluctuations caused breast pain. They were very happy years for me--a quiet uterus with no periods. You could explore this option with your doctor and see if it helps with your anemia. Eventually, I had my uterus removed at the same time as my colon, because of Lynch syndrome.
Hi,
Its frustrating dealing with health issues. I haven't been on this site in years but felt the need to respond to your message.
I have chronic iron deficient anemia. I have FAP and my polyps were found in 1998 when I was 35 yrs old. I had a total colectomy with a temporary stoma. My reversal was done 2 months later, successfully. 2 years later I had to have my gallbladder removed. The next 2 years, my GYN followed me very closely (at my request) . I was having menstrual migraines 9 days every month. My pelvic pain was excruciating and I was bleeding every month from my vagina and butt. I had different tests done and my GI surgeon (was a blessing) decided a total hysterectomy was needed. So I was 39 years old and my GI did lead on my surgery with the GYN attending. What they found was totally surprising. In the 4 years that I had my J-Pouch, I had 2 large cysts one on each ovary and the cysts were attached to my J-Pouch. It took the GI over 4 hours to unattach the cysts from my pouch so the GYN could do the total hysterectomy.
With all that being said, The total hysterectomy worked great for me. I do have 2 children I had in my 20's. Obviously I went directly in to menopause which is par for the course and lasted 10 years but I survived and so did my husband lol.
My JPouch is 26 yrs old. I also get iron infusions but not like you. Usually every couple of years. I feel the hysterectomy helped me.
I apologize if this is long and I hope this helps you. Just always keep in mind that YOU know your body better than anyone and you are not a statistic. Advocate for yourself and your health and never accept anything less. No one will do this for you, unfortunately.
Stay strong, keep your chin up and live your best life. I believe in you.
By the way, I had all my surgeries at Johns Hopkins Hospital in Baltimore, MD.
Take care.