• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Life after Crohn's flare hell - getting back to "normal."

I've been on this forum for about a week and my husband tells me that proper forum etiquette is to introduce oneself first. It is so good to be able to talk to other people who know what it's like to have Crohn's! Here goes my experience with hell:

When I was in my last trimester of pregnancy with my daughter I started having a lot of bleeding. I told my midwife and she dismissed it as hemorrhoids even after me insisting it was a lot of blood. Well, after having a labor from hell and a c-section I forgot all about the bleeding. When my daughter was 3 months old I got mild food poisoning that developed into a full blown flare within 2 months. I didn't see a doctor soon enough and when I did he was terrible! He misdiagnosed me with UC. I just wrote a 2 page letter to the hospital about how bad he was.:evil: Long story short, I wouldn't do what he said, he refused to see me as a patient along with another doctor at that hospital.:voodoo: I was afraid to see doctors after him. I saw a naturopath at that time which was of almost no help. I saw a GI dr. at another hospital. She scared me with a joke that my condition was "completely curable." Meaning they could remove my colon and I'd be cured.:eek2: Still afraid of doctors at that point.

At this time I was bleeding with every bm, going 7-12 times a day explosively (I cried and screamed with every bm for months), couldn't walk from severe joint pain, was bedridden for a couple months, was in diapers for a while (at the age of 25), had to move in with my parents because I couldn't take care of myself let alone my 6 month daughter, developed a fistula and a very painful hemorrhoid, and felt so miserable I wanted to die. :ybatty:

My naturopath talked me into upping my prednisone which helped. I went to physical therapy for a few months for a compressed disc which got me walking again!:dance: Isn't that nice I had a compressed disc present itself from labor while I was going through all of that. I was doing a better for a few months but still in bad shape - going 5-7 time a day, exhausted, hemorrhoid and fistula getting infected all the time, fistula drainage eating away my skin.

Eventually our marriage mentors found out I had been sick and recommended a GI doctor they had seen. She was friends with his wife and he made sure I got in within 2 days! He got the ball rolling right away, immediately suspected Crohn's and confirmed it. He put me on Humira (7 months now) and I felt better almost immediately. He's hoping the fistula closes on it's own. I had a surgeon ready to remove my hemorrhoid, but I backed out at the last minute because I wasn't ready for the recovery involved. We started trying to have another kid but no luck so far (last time was EASY). I see a fertility specialist next month just to tell me what's going on. I'm starting to have doubts about it too because I would feel terrible if my kid ended up with crohn's. So that's my long, somewhat condensed, crappy Crohn's story.:ybiggrin:
 
Sorry to hear you have to be a part of this forum but welcome; it is reassuring we can all chat about our illnesses.

You've been through a lot which has put a strain on your body so you may not fall pregnant as easily as the first time.
I've successfully had 4 healthy babies; for some reason my UC vanishes while I'm pregnant. (Unfortunately I can't keep having babies to keep it at bay ;) )
Have you had all your iron, folate, B levels, zinc checked. If you are lacking in these, especially zinc it can make it harder to fall pg.

Good luck :)
 

xJillx

Your Story Forum Monitor
Hi and welcome! Boy, your new GI sounds like a hero. I am so glad he was able to diagnosis and treat you quickly. I hope Humira continues to work well for you.

Good luck with trying to get pregnant. Keep us posted in the Pregnancy & Crohn's forum.
 
Hello and welcome to the forum..:)
It really was a hellish time. Glad the pain has eased. Just not going to the toilet as much is a real energy saver..(I was worn out)
With the new GI on board, hopefully things can be brought into line and not all children can go on to inherit CD.
Who knows by the time they are born...there could be a cure...:)
Keep the faith on all fronts..:)
 
I didn't know about having the vitamins and minerals checked. My new GI is a hero to me and I don't use that term much. I didn't know about the Pregnancy and crohn's forum yet. Thanks! I'll have to check it out. I'm hoping the fertility specialist can shed some light. I'm a little afraid my witch doctor midwives damaged my cervix trying to shove it over my baby's head, not to mention a nasty infection after c-section, and crohn's - who knows. Thanks for the replies.
 
Top