I'm usually not into self-pity, but....

[SarahAnne]

No long back story, I promise! I was diagnosed with CD 15 yrs ago April, in finals week my first year of college. I had been suffering with symptoms from the age of 11 or 12, but cleverly hid most of them. Had my first surgery in October of the same year, had 14 inches total removed along with my terminal ileum. So no absorption of B12 for me.

I've pretty much been in a flare since then with the exception of both of my pregnancies. I NEVER had morning sickness, and I could eat whatever I wanted! About a year after each one was born, the flares got worse.

I've now restarted Remicade and it is helping, somewhat. I have a stricture at the site of my resection, and it has caused a complete blockage twice. My GI scopes me yearly and dilates it, but that only lasts a few months, then it's pain, worse pain, and finally vomiting everything back up. I am 34 and I weigh 85 lbs. I'm embarrassed to pick my son up from school or go to the beach. I know I look anorexic and it makes me angry. I want to scream at everyone I see, tell them I have a chronic disease, and try to make them understand I don't want to look like this. I'm also really worried that I need another surgery and my doc is putting it off for whatever reason. I simply can't live like this anymore. I can't even wait the 8 wks. for my next dose, I can feel it stop working after week 4 or 5.

I just want to live a normal life!

 

[mayhavecrohn's]

i know what you mean i have been sick throwing up and having the diarrhea now for 2 weeks and my reg doctor throught i had the flu but i should not still be this sick he thinks i have crohn's so he is sending me to a GI doctor to have me tested for it i am also new here to i suffer with chronic pain i have a diease called endometriosis,fibromyalgia i went to my endometriosis doctor today and told her what was going on and when they checked my weight its 128 right now but i know i have lost more then that before i started to get sick last week my weight was 132 but i have had this trouble with keeping my weight up before i met my husband and got married my weight was only 84 or 85

 

[dreamintwilight]

SarahAnne - Have you tried any other medications and/or drug combinations besides Remicade? Perhaps you need a stronger dose of meds than just the 8 weeks of Remi. I've heard many people have success when switching from Remicade to Humira. There is also the option of getting Humira shots every week instead of just every 2 weeks.

What have you tried already? Havr you considered getting a 2nd opinion about your treatment from another doctor? Don't give up hope!

 

[margie]

SarahAnne,
I sure know how you feel about living a normal life. I am seriously beginning to wonder what a normal life with no vomiting or diarrhea would be like. My life every single day now for years has been either sitting on or hovering over a toilet, and still the doctors have me on no treatments.
We can only hope that eventually that all of the research being done will come up with a cure for this disease so that we can live a somewhat normal life.
I hope that you will feel better soon,

 

[SarahAnne]

Thanks everyone. I have had Crohn's for a long time, but when I was diagnosed it was '96 and even less was known about IBD than now. My GI at the time actually told my mom he would have to research it because they only barely mentioned it in med school!

MayhaveCD: My mom has fibro, so I really feel for you. I know how debilitating that can be. I am showing a few symptoms and have some of the trigger points, but all of my labs came back clear (we all know that they aren't always accurate). My mom got it when she was about the age I am now, so I am dissecting every symptom I have. I hope it's not Crohn's for you, but sometimes it's nice to get a diagnosis just for validation that something really is wrong!

Dreamintwilight: I was originally on remicade, but went into anaphylactic shock because the infusion lab neglected to pre-medicate me one time. I had it successfully several times before. I was scared, so I stopped the treatments. I was on humira, but I lost insurance and had to go off. Then I got the humira free from Abbott, and was on it for a while. It worked, but not as well as the remi. My free stuff ran out, then hubby got insurance! Only, the humira was still going to be $2500 a month. NO THANKS! I have restarted the remi at a different infusion lab and very specific orders.

About the meds, I'm just so confused. I feel like I know less than some of the newbies here! My doc doesn't have a lot of IBD cases, he mostly specializes in GERD, Barrett's (which my dad has), and things like that. He has never recommended any type of probiotics (I had to Google, didn't even know what they were), excersize, diet, or supplements. I am also on Pentasa, but I told him it never worked for me when I took it years ago. I'm about to make an appt. with another GI here, but I live in a small town, docs are few and far between, specialists even more so.

Sorry about the long post, I am hoping to get better care soon. I really feel like I am being mismanaged and forgotten about with my current doctor.

 

[dreamintwilight]

I don't know if they had it back then when you were on Humira, but they do have a Patient Assistance Card that should make your co-pay at most like $5. Last year I paid $2, this year it went up a little for me and I pay $3.25. Still great! Just something to keep in mind if you ever wanted to go back and try Humira at a stronger dose

Don't feel bad about not knowing as much as newbies on here. You've been diagnosed for a very long time and many things have changed since you were first diagnosed. Things are still changing, even with testing! I was completely overwhelmed by all of the information at first, but this forum really helped me understand it better. I consider my GI very good, but he had no recommendations as far as probiotics, diet, exercise, etc. He was purely on the medicinal side of my treatment. Other than "stay away from seeds, nuts, and skins" at first (because I had severe narrowing), I was left to figure it out on my own. "What To Eat With IBD" was a book I found extremely helpful as far as figuring out what supplements I should be taking. Another book "Eating Right For A Bad Gut," while a bit conflicting with some of the info from the first book I mentioned, it explains more of the science behind what our diet should be like. I could not do many of the things in my diet that the Eating Right book mentioned, but I found out it was because for me, that diet was was more for maintenance purposes (once the active inflammation is gone or more controlled--where I am at now!). It does have a lot of advice for exercise and nutrition though. I found both books on Amazon.com for a realy cheap price!

I definitely concur with your decision to get a 2nd opinion. don't settle for so-so care from your doc. It can be a pain, but when you find a good doc you will be happy! And you deserve to have great care! I do understand it can be hard to find another one when it seems there aren't many to choose from. Sometimes you have to be willing to travel a bit farther I am originally from Florida, by the way!!

 

[Grant]

SarahAnne, thats not self pity. Its telling us all about the hellish time your having. Its what makes this board tick. I've had no end of trouble with strictures & my gut feels tight now so I'm in for a colonoscopy & balloon dilation 21st of this month. My last dilation was in December after surgery last August. For a dilation to last 6mths for me is some sort of record TBH, they normally only last weeks. Previously I've stated that the Humira I'm on has failed but thinking about it it must have helped.
Painwise-what can I say. Never had appendicitis, wont have either because they were whipped out during a Right Hemicolectomy in 97, but apparently the pain of a blockage is the same. I've had 3 so can fully understand what your going through. I have Tramadol as a pain killer, very strong but very good. And when I have a blockage I've been told to go straight to A&E. And I now request & Nasal Gastric tube, it empties your stomach & takes the pressure off. The relief is worth the discomfort.
I really hope you get through this, there is always light @ the end of the tunnel somewhere somehow.
Best Wishes
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[SarahAnne]

This stricture is giving me no end of trouble. My GI is against surgery because 1. I'm so young and 2. He's worried about short bowel syndrome. I understand both concerns, but my surgery was almost 15 years ago. The last time I was dilated, he said the opening had shrunk to the size of the tip of a pen. No ****, that's why everything was coming back up! I certainly don't want another surgery, but not having one is looking bleaker and bleaker. This stricture is my only problem right now with the CD. No open or active fistulas, no inflammation, and my BM's are loose but I'm only going 5-10 times a day. For me, that's not bad, it's a blessing. I can't keep having scopes to dilate, I'm sure my insurance company would not approve more than 1 a year. I mostly feel frustrated.

So glad I found this forum. It helps to talk to people who understand.

 

[Grant]

SarahAnne I guess he's erring on the side of caution but sometimes a stricture can be maybe 2-3 cms long. They have to remove a bit more usually to make sure there is a decent blood supply. The problem is maybe he just doesn't realize the hell your going through. Perhaps the Remicide & then dilation will help. Well worth a try perhaps.
Ref the nausea have you tried Ginger, maybe in the form of biscuits. Does seem to work a bit for me. Maybe ask him about an NG tube as well.
Best Wishes
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[ameslouise]

Hi Sarah Anne and welcome!!!!

I concur with Marisa above - a second opinion might be in order. Any patient that feels like they are being neglected or not important to their doctor - time to find a new one!

Good luck - I hope you can get back on track and start feeling better soon, either with additional meds, surgery, or both!!

- amy

 

[Karissa]

Sarah Anne,

I agree with Marisa and Amy- it might be time to look into other options. Also, as much as medications help, you might want to look into natural remedies and diets. Food is a big part of Crohn's and it is really helpful to figure out what causes your flare-ups. Of course, if your bowel is severely inflamed, everything will cause pain. I would get a second opinion. Sometimes, medications don't work and you need to try something new. Sometimes it's worth it to go to a larger hospital that is farther away because they have more resources and experience. I live in Agawam, MA and travel two hours to Boston Children's for my appointments because they can help me so much more. Local hospitals did not have enough knowledge to help me.

I hope you get some relief soon!

-Karissa