Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Yes Debbie. My main symptoms were pain and C. The pain was debilitating. When I went in the hospital October 07 my doctor told me I had inflammation from my stomach to my rectum. Every time I took a bite of food it hurt for 2 hours. I lost so much weight in those 3 or 4 months. My doc informed me that everything but your colon has pain receptors in it. As the food moved through my inflamed intestines it was very painful. I still get that from time to time. Broccoli, nut butters, nuts, and a few other things cause it. Since I ate an illegal at my Christmas party on Dec. 18th it's back but not nearly as bad. I had to leave work Monday. I made a on big pot of chicken soup and the pain is almost gone. I'm still bloated and have C pretty bad though. As I type I feel a tightening with a sharp pain under my belly button but not terrible. Misty Kimble CD - no meds SCD - 2 years > > I have a question for anything with a cd dx. Do you have gut pain/stinging > if you eat the wrong food or for no apparent reason? I've been told this > isn't possible--no feelings in the guts or something. > > Thanks, > Debbie 40 cd > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 I am with Misty. I have pain when I eat too much roughage. My pain was also very debilitating, so much so, that I could not have a BM (severe Bdy D) without having an ice pack on my abdomen. I would often vomit the pain was so bad. I am not like that now unless I eat too many raw veggies, too much fruit with skins or too much salad and even then, not with the B or D, just not comfortable as it moves along my digestive tract. UC/C- remicade SCD May of 07 > > > > I have a question for anything with a cd dx. Do you have gut pain/stinging > > if you eat the wrong food or for no apparent reason? I've been told this > > isn't possible--no feelings in the guts or something. > > > > Thanks, > > Debbie 40 cd > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Thanks for the responses. I noticed a few said left side pain. Mine is always on the right to start but if it's bad then it's my entire abdominal area. It's intense burning--like 8 level pain on 1-10. I usually have to lay down, it feels like the blood is dropping out of my face and I feel 'greenish' like I've been poisoned. At least I would think that's how someone poisoned would feel. I mentioned food because the killers are watermelon, butternut squash or raw salsa. Some things I will try again (salsa) and some things I'll never try again;-). The pentasa is the *only* thing that works. I don't think a pain killer can touch this, at least none that I've had which has only been vicodin or hydrocone (generic vicodin). Has anyone with any dx experienced that? Just curious. Interesting that a lot of people say no pain with cd but others say it's worse than anything up to this point. Debbie 40 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 My doc tried me on Imuran first. Results were good for a couple weeks then a decline. Then she tried me on Entocort, same thing. Then she tried me on Entocort and Pentasa together, same thing. The only thing that touched my pain was Darvocet. I tried Loritabs, and they would take an hour to kick in, last 2 hours, and then start to wear off. By hour 4 I was looking for more. The Darvocets, actually made the pain bearable for about 8 hours at a time... enough to get through the work day. I haven't had to take pain meds since I started SCD though Monday, I thought I would. The only way I could sleep before SCD was with a heating pad on my back and across my right hip over my abdoment. At the 2 hour mark when they would turn off, I'd wake up and have to turn them back on. I'm so thankful I found SCD. My Crohn's is in my terminal illeum (sp?) which is on the right side and my doc said the " classic " place for Crohn's to start. Misty Kimble CD - no med SCd - 2 years > > Thanks for the responses. I noticed a few said left side pain. Mine is > always on the right to start but if it's bad then it's my entire abdominal > area. It's intense burning--like 8 level pain on 1-10. I usually have to > lay down, it feels like the blood is dropping out of my face and I feel > 'greenish' like I've been poisoned. At least I would think that's how > someone poisoned would feel. I mentioned food because the killers are > watermelon, butternut squash or raw salsa. Some things I will try again > (salsa) and some things I'll never try again;-). The pentasa is the *only* > thing that works. I don't think a pain killer can touch this, at least none > that I've had which has only been vicodin or hydrocone (generic vicodin). > > Has anyone with any dx experienced that? Just curious. Interesting that a > lot of people say no pain with cd but others say it's worse than anything up > to this point. > > Debbie 40 cd > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Debbie I don't have Crohns, but I have pain in various places in connection with digestion. Certain foods trigger more pain, and a few other symptoms I work to keep minimal. We have pain receptors along our digestive tract, along with what is labeled a "second brain", a complex of nerves and autonomic functions. In fact, many of us with digestive disorders develop an oversensitivity so that normal digestive functioning, like peristalsis, trigger a pain response. I've learned to recognize which pain is "normal" for my digestion, and which is not. Where the pain is located is a helpful guide. My gastroenterologist helped me learn some of this initially, but experience has taught me the rest; and doing research into digestion and body systems has helped me too. Kim M. SCD 5+ years >>>>>>>>>>>> I have a question for anything with a cd dx. Do you have gut pain/stingingif you eat the wrong food or for no apparent reason? I've been told thisisn't possible--no feelings in the guts or something.Thanks,Debbie 40 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Pre-SCD I would experience debilitating pain in the right hand side in my transverse colon. I would get pain if I drank a beer or ate ice cream. The pain was so bad as to cause me to stop drinking beer and eating ice cream. Once I started the SCD I no longer had pain. That was the first symptom to disappear. So for me the pain was definitely associated with eating the wrong foods. Carol CD 21 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Debbie I have a question for anything with a cd dx. Do you have gut pain/stinging if you eat the wrong food or for no apparent reason? I've been told this isn't possible--no feelings in the guts or something. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Misty, that sounds like me in the beginning but I was spasming a lot. Taking two bentyl, showering and back to the heating pad to spasm more. Chronic d and v. It was horrible and what I went to the ER for in the first place before I got diagnosed. It took a year maybe and several attempts at different medicines to get rid of 'extreme' spasming. I think that's why the prednisone up/down happened. Then finally SCD and I was able to taper off the prednisone. That's the short version anyway ;-). Debbie 40 cd My doc tried me on Imuran first. Results were good for a couple weeks then a decline. Then she tried me on Entocort, same thing. Then she tried me on Entocort and Pentasa together, same thing. The only thing that touched my pain was Darvocet. I tried Loritabs, and they would take an hour to kick in, last 2 hours, and then start to wear off. By hour 4 I was looking for more. The Darvocets, actually made the pain bearable for about 8 hours at a time... enough to get through the work day. I haven't had to take pain meds since I started SCD though Monday, I thought I would. The only way I could sleep before SCD was with a heating pad on my back and across my right hip over my abdoment. At the 2 hour mark when they would turn off, I'd wake up and have to turn them back on. I'm so thankful I found SCD. My Crohn's is in my terminal illeum (sp?) which is on the right side and my doc said the " classic " place for Crohn's to start. Misty KimbleCD - no medSCd - 2 years >> Thanks for the responses. I noticed a few said left side pain. Mine is > always on the right to start but if it's bad then it's my entire abdominal> area. It's intense burning--like 8 level pain on 1-10. I usually have to> lay down, it feels like the blood is dropping out of my face and I feel > 'greenish' like I've been poisoned. At least I would think that's how> someone poisoned would feel. I mentioned food because the killers are> watermelon, butternut squash or raw salsa. Some things I will try again > (salsa) and some things I'll never try again;-). The pentasa is the *only*> thing that works. I don't think a pain killer can touch this, at least none> that I've had which has only been vicodin or hydrocone (generic vicodin). > > Has anyone with any dx experienced that? Just curious. Interesting that a> lot of people say no pain with cd but others say it's worse than anything up> to this point.> > Debbie 40 cd > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Carol, same thing with some foods but I already know I can't drink the beer and I'd really like to have one sometimes. So, I won't in case one day I can--don't want to ruin it forever. Pre-SCD I would experience debilitating pain in the right hand side in my transverse colon. I would get pain if I drank a beer or ate ice cream. The pain was so bad as to cause me to stop drinking beer and eating ice cream. Once I started the SCD I no longer had pain. That was the first symptom to disappear. So for me the pain was definitely associated with eating the wrong foods. Carol CD 21 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Debbie I have a question for anything with a cd dx. Do you have gut pain/stinging if you eat the wrong food or for no apparent reason? I've been told this isn't possible--no feelings in the guts or something. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 I'm not disputing what your doc says but if that's true, why is UC so painful (as it's located in the colon)? I mean I've been so bad they've had to give me morphine for the pain. Stacey > > My doc informed me that everything but your colon has pain receptors in it. > > Misty Kimble > CD - no meds > SCD - 2 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 At 08:23 AM 1/7/2010, you wrote: Carol, same thing with some foods but I already know I can't drink the beer and I'd really like to have one sometimes. So, I won't in case one day I can--don't want to ruin it forever. Debbie, It isn't beer, but if you can find bottles or cans of hard cider, it makes a nice substitute to have something fizzy and with a bit of alcohol when friends are doing the same. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 At 08:23 AM 1/7/2010, you wrote: I'm not disputing what your doc says but if that's true, why is UC so painful (as it's located in the colon)? I mean I've been so bad they've had to give me morphine for the pain. Although the colon doesn't have pain receptors, there are plenty of them around it. If it's inflamed, this can affect the whole abdomen. I ran into this after my cancer surgery (for uterine cancer, not colon). Turns out every single one of the oral pain meds I was given was chock full of illegals. (Something I forgot to research in amongst everything ELSE I was researching.) My post-surgical pain went on and on and on and on... until I happened to look up the pain meds. I stopped them, with the OK of my doctor. And upped my probiotics. And within a week, the pain was gone. Apparently, the lactose and other junk in the meds had fed the remaining bad bacteria in my gut (probably the balance was upset from the post-surgical antibiotics) and they were having the party of their lives -- resulting in severe pain for me, which I erroneously thought was post-surgical pain, and thus, kept taking the pain meds. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 It's just every once in awhile like once a year in the Spring, it seems like a cold beer would be nice. I'll have to locate it here. Thanks for the tip. I think about that at Christmas but not during the year. Maybe I should find it now and stock it. Debbie 40cd On Thu, Jan 7, 2010 at 9:17 AM, Wizop Marilyn L. Alm wrote: At 08:23 AM 1/7/2010, you wrote: Carol, same thing with some foods but I already know I can't drink the beer and I'd really like to have one sometimes. So, I won't in case one day I can--don't want to ruin it forever. Debbie,It isn't beer, but if you can find bottles or cans of hard cider, it makes a nice substitute to have something fizzy and with a bit of alcohol when friends are doing the same. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 I dunno... that's what she told me. Shrug. I had no reason to disbelieve her until now. She also told me diet had nothing to do with my disease. Misty > > > > My doc informed me that everything but your colon has pain receptors in it. > > > > Misty Kimble > > CD - no meds > > SCD - 2 years > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 At 02:22 PM 1/7/2010, you wrote: >> It's just every once in awhile like once a year in the Spring, it seems like a cold beer would be nice. I'll have to locate it here. Thanks for the tip. I think about that at Christmas but not during the year. Maybe I should find it now and stock it. << Well, yes.... As it happens, pre-SCD, I was rather fond of dark beers (oh, good, I typed dark BEARS at first). I love cider, but it isn't a dark beer. Or a dark bear. However, whenever I get to thinking about it, I remind myself that no matter how good it would taste... it ain't worth feeling lousy afterwards. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 "Has anyone with any dx experienced that? Just curious. Interesting that a lot of people say no pain with cd but others say it's worse than anything up to this point." Debbie, I don't have Colitis and probably not Crohn's, but my main GI symptom is unremitting pain---with the pain comes obvious malabsorption showing itself in weight loss and various nutritional deficiencies. Leaky gut ? Overgrowth of yeast and bacteria ? Even the GI I see now, who believes diet is key, prescribes SCD, and treats for overgrowth doesn't have a clue what I have. Beats me--but I'm sure that SCD is helping and looking forward to really feeling better at the 1 year mark. This is month 9 and for the 1st time, I don't seem to be in a flare during the odd # months----shhhh, don't tell my SI. Sue R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 > "Has anyone with any dx experienced that? Just curious. Interesting > that a lot of people say no pain with cd but others say it's worse than > anything up to this point."Having had Crohn's for some 30 years and gone through all manner of stages with it, including two surgeries, I can't comprehend how someone could have Crohn's disease and not experience pain. Or at very least a lot of discomfort from gas/bloating and frequent or constant diarrhea. Unless the Crohn's was a very, very mild case, perhaps. If that's the case, they're extremely fortunate. And having personally talked, over the years, with dozens of poeple with Crohn's, I don't think that's the norm. One can, obviously, go into remission, and then be pretty much pain free for periods, sometimes long periods, of time. But when the disease is active, pain and fatigue are part of it for almost everybody, I surmise.n-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere Quote Link to comment Share on other sites More sharing options...
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