If you have been diagnosed , where is your pain?

[Deleted]

Dx: Crohn's disease (perforating) 

before surgery:
extreme abdominal pain (take your breath away/can't move) that was distributed throughout my abdomen. I used to be able to feel lumps throughout my intestines and one doc told me those were intestinal spasms - in hindsight I know they were obstructions and I was feeling blocked waste. yuck. I also start vomiting uncontrollably (in Jan I vomited 17x in one afternoon. I couldn't even make it home from school - had to get off the train early, and I still vomited in my hands. only stopped w/ the help of zofran) which makes sense because the slow motility/multiple obstructions means waste had no where to go. I had fecalization of the small bowel contents which is also gross. basically I was as backed up as backed up can get. I never had D, but I was chronically constipated. I didn't realize many people actually pooped daily.

I also tried to treat anemia for a year with oral iron therapy but my numbers were getting worse. now we know that's because my body couldn't create enough new RBC to keep up with all of the ulcerations and bleeding in my intestines. I also have malabsorption issues due to inflammation and scar tissue. 

I also would sometimes get ulcers in my mouth, which is common w/ CD.

after surgery:
pain is more localized. I felt some severe pain a few weeks after surgery in my lower left quadrant that left me pretty incapacitated. I still went to class but I couldn't work in the clinic because I couldn't even stand upright. riding in cabs (to/from class) was excruciating because any little bump made me want to cry. my doc thought it was nerve pain from the surgery - I don't know if I buy that. I'm wondering if I have colon involvement and that was a flare in my colon - we'll find out next week at my colonoscopy.

If I eat too much fiber, I feel pain in my lower right quadrant. luckily it doesn't last too long, and I welcome this as a sign of what I shouldn't put in my mouth. still no D, but I started to get constipated on Monday. luckily my period came yesterday and those hormones moved everything along (contractions in ute = no more C!).

I can't really tie fatigue to a flare because I am pretty anemic so I'm chronically exhausted. I used to have daily headaches before surgery but those have stopped - I've only probably had 3 in the month I've been out of the hospital, which is great!

since surgery I feel like a new person. I'm a little more tired on a day-to-day basis, but my tummy feels great and I'm not longer a slave to painkillers. hoping it stays this way.

accompany flares both before and after surgery:
anemia worsens
joint pain 

[bcv513]

My pain is mostly in the lower right. My GI told me the Crohn's is mostly located on my right side. Sometimes, if I eat something really bad, I get pain higher, like where my gallbladder was

[Deleted]

Mar 27, 2013 10:19:33 GMT -5 bcv513 said:

My pain is mostly in the lower right. My GI told me the Crohn's is mostly located on my right side. Sometimes, if I eat something really bad, I get pain higher, like where my gallbladder was

yep, most patients with CD have most of the damage near the terminal ileum (where the small intestine meets the large intestine), and this junction is in the RLQ. 

my jejunum was the portion of my intestines that was impacted the most, which is why I didn't have localized pain. now that the useless (and very painful!) portion is gone, I can feel that pain in the RLQ when I eat too much fiber. carrots the other night? no beuno. if anyone wants to come over I have a pound of baby carrots slow roasted in thyme and EVOO. 

[bcv513]

I've noticed that carrots are tough for me too. If I boil the life out of them (until they're basically mush) they seem to be fine. I would kill for a salad though. I'm afraid to even try

Mar 27, 2013 10:54:27 GMT -5 tacom said:

Mar 27, 2013 10:19:33 GMT -5 bcv513 said:

My pain is mostly in the lower right. My GI told me the Crohn's is mostly located on my right side. Sometimes, if I eat something really bad, I get pain higher, like where my gallbladder was

yep, most patients with CD have most of the damage near the terminal ileum (where the small intestine meets the large intestine), and this junction is in the RLQ. 

my jejunum was the portion of my intestines that was impacted the most, which is why I didn't have localized pain. now that the useless (and very painful!) portion is gone, I can feel that pain in the RLQ when I eat too much fiber. carrots the other night? no beuno. if anyone wants to come over I have a pound of baby carrots slow roasted in thyme and EVOO. 

[Deleted]

I know. I really miss salads!

Gluten free would be a lot easier if I could actually tolerate veggies. So far the only safe "veggies" are skinless potatoes and skinless sweet potato. I do that with rice, melon, banana, avocado, lean meat, fish, aged cheese, Greek yogurt, eggs. It's not so bad when I'm home and can season the hell out of everything with garlic, lemon, and thyme but eating out options are limited.

[anna7602]

If we're talking purely about pain and not flare-up symptoms (ridiculous diarreah, inability to keep anything in my system, rapid weight loss, feelings of dehydration and dizziness), then my pain is concentrated in two areas- intense menstrual-like cramping across my abdomen and really bad heartburn. I have ulcerative colitis and acid reflux.

See flare-up symptoms above for what an episode feels like, plus bleeding in some cases. I stop even trying to eat real food and stick to veggie broth, Jell-O and maybe white rice if I feel a bit adventurous.

I don't know why, but when I am having a bad UC episode, the acid reflux goes haywire, too. It's all related. But some days, I just have bouts of bad heartburn and I don't get as freaked out by that.

tacom, I knew the last couple of months were particularly rough for you, but reading your detailed description makes me want to give you a really big hug.

[Deleted]

Mar 27, 2013 17:00:10 GMT -5 anna7602 said:

tacom, I knew the last couple of months were particularly rough for you, but reading your detailed description makes me want to give you a really big hug.

aw, thanks. you are sweet.  

[aimeedyan]

I have Crohns.

My terminal ileum is usually my problem spot for blockages, but a lot of it is missing now and my whole intestines are rearranged. They hooked some stuff together after they took a bunch out. So... the location of my pain probably wouldn't help you much

I HAVE had issues around my belly button in the past, though, and that's always been a very tender area on me. My GI always knew when I was flaring because he could press there and I responded with choice words I think that was pre-surgery, though.

At least for Crohns, one person's flare looks differently than anothers. While there are common symptoms, the disease affects the entire digestive system so it can play out very differently among people with it. My typical flare looks like mind numbing pain in the gut, ulcers down my throat and in my mouth, severe joint pain, inability to process solid foods, bleeding, low hemaglobin, etc. Pre-surgery, I didn't have diarrhea EVER. I have it now as a last effect of the surgery, not a flare.

Are you seeing a GI? What medications are you on? Any signs of relief? Have you been scoped? I'm sorry I can't remember your whole story, but I hate to see anyone suffering when there ARE great drugs out there.