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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