I started developing symptoms when I was 12 or 13 and was finally diagnosed around 2002. (I'm 24 now) I went through a couple years of remission thanks to remicade but I have been fumbling with different meds for the past year or two trying to get it back under control. Today my GI told me to schedule a surgery consult, so that will probably be my next route.
Hi everyone
- Thread starter curtis
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HI Curtis, Welcome to the forum. Good luck with your doctor vist.
Thanks everyone! I'm kind of looking forward to the idea of surgery as well... I'm a little bit worried about how it's going to play into work, but the risk/reward type considerations sound appealing.
I switched to humira around 3 years ago, doubled it to weekly injections a year later, added pentasa about a year ago. Tried a month or so of anti-biotic around then as well. Up until this point everything was bearable, I just had more symptoms than we felt I should. Then, in March, my insurance stopped approving Humira and it took a month to get back onto an "every other week" dosage. By that time I was in pretty bad shape, missing a couple days at work and just being generally miserable from time to time. So they put me on a round of steroids, starting at 40mg, which worked well until I got down to 5 or 10 mg. Then I had my first ER visit when I unexpectedly developed unbearable pain and accompanied with vomiting. (just spent one night though) Went back up to 40mg prednisone and my dr and I decided it was worth the risk to add 6mp so we did so. The Hospital bill seemed to be enough to persuade the insurance company to get me back on weekly Humira though, lol. So I've been on weekly humira, 6mp, pentasa, and various prednisone levels for the past 3-4 months. I guess 6mp should be kicking in by now, but every time I drop the prednisone i get sick, and even 40mg doesn't seem to be cutting it any more. My dr gave me tramadol for pain though so I was able to sleep well lastnight. I think that that, coupled with staying on a higher level of prednisone should keep me out of the hospital until the surgery. Oh yeah, I got hyocyamine a month ago as well and I think its been mildly effective for some of the pain.
I switched to humira around 3 years ago, doubled it to weekly injections a year later, added pentasa about a year ago. Tried a month or so of anti-biotic around then as well. Up until this point everything was bearable, I just had more symptoms than we felt I should. Then, in March, my insurance stopped approving Humira and it took a month to get back onto an "every other week" dosage. By that time I was in pretty bad shape, missing a couple days at work and just being generally miserable from time to time. So they put me on a round of steroids, starting at 40mg, which worked well until I got down to 5 or 10 mg. Then I had my first ER visit when I unexpectedly developed unbearable pain and accompanied with vomiting. (just spent one night though) Went back up to 40mg prednisone and my dr and I decided it was worth the risk to add 6mp so we did so. The Hospital bill seemed to be enough to persuade the insurance company to get me back on weekly Humira though, lol. So I've been on weekly humira, 6mp, pentasa, and various prednisone levels for the past 3-4 months. I guess 6mp should be kicking in by now, but every time I drop the prednisone i get sick, and even 40mg doesn't seem to be cutting it any more. My dr gave me tramadol for pain though so I was able to sleep well lastnight. I think that that, coupled with staying on a higher level of prednisone should keep me out of the hospital until the surgery. Oh yeah, I got hyocyamine a month ago as well and I think its been mildly effective for some of the pain.
Yeah, I saw the surgeon this morning. He is going to talk to my GI and review everything before he says it's the best choice (he's a good doctor, he did a couple fistula repairs for me in the past couple years as well and I've been pleased). Then I have a small bowel follow through on Monday and it sounds like I will probably be doing the surgery the following week if it happens.
Well, sorry to hear you need surgery but I will tell you that for some time afterwards you actually feel pretty good and somewhat normal again, at least I did following my bowel resection. I was 27 when diagnosed with Crohn's. I've been on multiple meds, so I've been there too.
I hope things go well for you and that you're feeling much better soon! Have a great weekend!
I hope things go well for you and that you're feeling much better soon! Have a great weekend!
Thanks again everyone for the warm welcomes!
Update:
I'm 4 days post op and doing great. My bowels seem to have woken back up yesterday and so I'm hoping to be sent home tomorrow
Surgery was definitely the right option for me. They removed the last 10 inches or so of small bowel and then a couple from the top of my colon. The best part though is that the surgeon found that one loop of my small bowel had fused to my pelvis or some tissue down there, creating a kink/partial obstruction, abscess, and somehow knotting up part of my colon as well. All stuff that wouldn't have gone away with medicine changes and he said it was probably causing the majority of my pain. (maybe an extraordinary radiologist should be a priority with CD? I'm gonna ask my dr) The surgeon separated the fusion and straightened everything out (a quick scope didn't show any internal colon damage i guess). I have a "J.P" bulb/drain thing that is draining that area now, so I don't know if I have to wait for that to stop draining before they'll send me home, but either way I'm very satisfied / optimisitic
Thanks again everyone, I'll try to stick around and keep an eye out for opportunities to lend my experiences
Update:
I'm 4 days post op and doing great. My bowels seem to have woken back up yesterday and so I'm hoping to be sent home tomorrow
Surgery was definitely the right option for me. They removed the last 10 inches or so of small bowel and then a couple from the top of my colon. The best part though is that the surgeon found that one loop of my small bowel had fused to my pelvis or some tissue down there, creating a kink/partial obstruction, abscess, and somehow knotting up part of my colon as well. All stuff that wouldn't have gone away with medicine changes and he said it was probably causing the majority of my pain. (maybe an extraordinary radiologist should be a priority with CD? I'm gonna ask my dr) The surgeon separated the fusion and straightened everything out (a quick scope didn't show any internal colon damage i guess). I have a "J.P" bulb/drain thing that is draining that area now, so I don't know if I have to wait for that to stop draining before they'll send me home, but either way I'm very satisfied / optimisitic
Thanks again everyone, I'll try to stick around and keep an eye out for opportunities to lend my experiences
Jessi
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Hi Curtis! Welcome and congratulations! I just discovered this thread today. It sure sounds like you've been through plenty of hard times recently, and you really deserve a nice break. I'm glad the operation went well and that you're recovering. :hug:
I have always been afraid - in the back of my mind - of a possible surgery someday. Your experience so far has helped me to feel better about it. I'm a bit of a worry-wart, as I am in remission now and have no real need to think about surgery at all... But thank you, anyway.
I have always been afraid - in the back of my mind - of a possible surgery someday. Your experience so far has helped me to feel better about it. I'm a bit of a worry-wart, as I am in remission now and have no real need to think about surgery at all... But thank you, anyway.
Yeah I know exactly what you mean. I always thought it was a last resort, hopefully-we-never-get-there kinda thing, but I think i learned that it doesn't matter if it is or isn't; it might just be the right tool for the job sometimes.
Also, I'm recognizing that it's only been 4 days and I don't know what's to come, but i'm still very optimistic.
Also, I'm recognizing that it's only been 4 days and I don't know what's to come, but i'm still very optimistic.
David
Co-Founder
Hi Curtis,
I'm so pleased your surgery went well! Hurray!
The last 10 inches of your small bowel is the terminal ileum. That's also responsible for vitamin B12 absorption. I would strongly recommend discussing supplementation with your doctor the next time you speak with them. We're still working on this, but you can start reading about Vitamin B12 here.
Continued success to you good sir
I'm so pleased your surgery went well! Hurray!
The last 10 inches of your small bowel is the terminal ileum. That's also responsible for vitamin B12 absorption. I would strongly recommend discussing supplementation with your doctor the next time you speak with them. We're still working on this, but you can start reading about Vitamin B12 here.
Continued success to you good sir
thanks for the tip! I had asked my GI about that, kind of aware that different sections have different functions, and he did say it might be needed. I'll be sure to read up some more and mention it again as a concern; I have a follow up with him in a couple weeks to discuss my maintenance plan.
Crohn's 35
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Hey Curtis glad you got your surgery done and succesful. I to have had two resections and not much of my Ileum left and therefore on B12 shots monthly..depends on your deficiency. Helps brain function and absorption. Also a good idea to get Omega 3.6.9 or fish oil. Helps inflammation and good for the brain. Keep us posted on how you are doing.
