Author |
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Herckleperckle
Member
11-20-2003
| Tuesday, July 12, 2005 - 3:41 am
Thanks, Kona. Just checked it out. I am willing to give it a try. This fatigue is just taking all the spark out of me.
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Metoo
Member
02-22-2005
| Tuesday, July 12, 2005 - 9:01 am
Thanks for the website. It really looks worth giving it a good checking out. Anything that can help is appreciated.
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Konamouse
Member
07-16-2001
| Tuesday, July 12, 2005 - 4:33 pm
I was looking for folks who have already tried it I have to put together a food list for the test diet (the SCD diet) vs a standard low residue, lactose-free, low fat diet (the current diet advice for Crohns). This is not something anyone should do on their own - please work with a qualified dietitian to make sure your diet is nutritionally adequate. 'squeek'
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Herckleperckle
Member
11-20-2003
| Thursday, July 21, 2005 - 12:33 am
OK, I am miserable and it is my fault, but still . . . I enjoyed a bowl of Wheat Chex this morning. In fact, it tasted so perfect, I had a second bowl. Well, I KNOW better. And besides the frequency issue it prompted. I now have a first-time, miserable symptom of a sore you-know where (Uranus). On top of the overall body itching (an intermittant phenomena) that is now back big time, I nearly went crazy tonight from this new pain, and finally just sat in the tub, using two Aveeno packets to try to calm the nerve endings. It FINALLY worked and I fell asleep. Are you familiar with this fun symptom? It is absolutely the worst yet. Thanks. (Message edited by herckleperckle on July 21, 2005)
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Zachsmom
Moderator
07-13-2000
| Friday, July 22, 2005 - 11:31 pm
What you could have is some internal hemerroids. Have you had a colonoscopy lately? Did it show any? These are no fun as there is no topical solution like the external ones. Oatmeal baths with Epsom salt bring relief. Get some fine netting, fill with Oatmeal and tie, pour in a 1/2 glass of milk with 1 cup of epsom salts in a warm/hot bath and soak. When the oatmeal pack is soaked, use it over your skin. (helps with dry itchy skin) If you do not have time for a 'full bath' you can also buy a thing that goes on your toliet for soaking...just use less milk and 1/4 cup of epsom salt and soak that way...use the warmest water that you can tolerate. soak the oatmeal in the netting and then squeeze as much as you can into the water...soak for 10-15 minutes. Your going to find that you feel all of these small symptoms (like the soars on the corners of your mouth, internal hemorriods, dry itchy skin etc) This isn't a fun disease. Let me know if the above works. I find it works better than the Aveeno..I love Aveeno oatmeal baths, but the recipe I gave above works much better. (for me)
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Herckleperckle
Member
11-20-2003
| Saturday, July 23, 2005 - 12:02 am
Thanks, Zmom. I did have a colonoscopy, but nothing was said about that. But NOW is a different story, I think. Thanks so much for the 'potions;' I will definitely try them!
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Luvmyjrt
Member
09-18-2003
| Saturday, July 23, 2005 - 7:32 am
Sorry you're feeling punky HP! Hope Zmom's remedies help you. I am still recovering from the Chlostridium Difficile and wondered if Zmom knew anything about it and it's relation to Chron's. Symptom wise, it sounds much the same! Not fun! Take care of you!
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Konamouse
Member
07-16-2001
| Tuesday, July 26, 2005 - 4:11 pm
CDiff is an overgrowing of nasty gut bacteria. Usually happens after you've been taking antibiotics that kills off all your healthy gut bacteria. Probiotics highly recommended (try Stoneyfield Yougurt). 'squeek'
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Landi
Member
07-29-2002
| Tuesday, July 26, 2005 - 4:27 pm
after having a colonoscopy and many other tests, it has been determined that i have diverticulitis. i am on a liquid diet, antibiotics, so far i haven't needed hospitilization. i'm just glad the pain is subsiding and i'm not breaking wind every few minutes. thanks for all your help zmommy and konamouse. i'm just glad i'm not impacted anymore!
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Herckleperckle
Member
11-20-2003
| Tuesday, July 26, 2005 - 4:45 pm
This is BUM stuff, alright! Thanks, Luv. Good golly. Did you read Cathie's folder, by any chance? Little Libby got an infection--party because she is minus a spleen, but also partly because of all the antibiotics she has to take. Interesting. Goodness, landi, I had no idea you were ill. (You never complain!) No more nuts for you, huh? (Shows you the only thing I ever heard about diverticulitis.) Liquid diet only temporary, I hope? And Konamouse, so glad you are a part of this board! You are always so helpful!! Thank you!
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Herckleperckle
Member
11-20-2003
| Wednesday, July 27, 2005 - 6:52 pm
Zmom, hope you saw the note I left you. I've had a stomach ache all day--since breakfast time. I skipped breakfast. I had lunch with my mom (but forgot to take my Pentasa with me) and things got worse. By the time I got home at 3:30, I was feeling pretty bad. I proceeded to get intermittent stabbing pains in my right hand side (about every 5-10 minutes) til about 8:30. I used a heating pad and drank a little water, but that's it. I felt nauseous, but never actually got sick. My whole stomach looks and feels bloated, and it is tender and still sicky--but the stabbing pains have stopped for the past hour, anyway). I have the chills now--but no fever--just feel really yukky. And my right side (oops, pain just returned there) feels very tender. This is the first I've been able to sit up for hours. So is this Crohn's acting up or what? I looked up Crohn's pain on the right side on the net and see that I could have a perforated ulcer (I do have an ulcer). But since things are calming down a bit (rather than getting worse), I have preferred to believe I just need to clear this out of me--naturally. Any ideas/thoughts? This is the worst time I've had since being diagnosed. (Cramping up again now.) (I do have a doc appt on Monday with my new doc.) Thanks, Zmom.
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Zachsmom
Moderator
07-13-2000
| Thursday, July 28, 2005 - 5:15 pm
Sounds like a typical Crohns Flare. I get those frequently. Make sure you have no internal bleeding (if you vomit, make sure it's not like coffee ground or bright red blood) and check your stools If it gets really bad, go to the ER. They will give you some nice pain meds to get you through the pain. Whenever I have those, I just crawl in bed and wait it out..it's worse then labor huh? ((HUGS)) I know how painful it is, and if I could I would take it all away. That is just the disease. Luv- I am not really familar with Chlostridium Difficile ... I did look it up on the internet, but don't know of any relation. I do hope you or any of your loved ones are not suffering...sounds painful!
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Herckleperckle
Member
11-20-2003
| Sunday, July 31, 2005 - 5:51 pm
Thanks, Zmom, just seeing this now. If you visit my folder, you'll see I made a trip to the ER which turned into a 4-day stay. Doing better now, just kinda humbled. Btw, when I think back, I remember seeing reddish in the toilet when I used the bathroom at my mom's. But nothing clicked. Duh. Should have realized right then, cuz I was not doing well then. Next time, I'll know. Thanks, hon.
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Watching2
Member
07-07-2001
| Sunday, August 07, 2005 - 4:07 pm
{{{Herck}}} Sorry you ended up in the hospital! Sorry I haven't been back to this board for a while either. I looked for a bit and then well, "you know what (BB!)" started and I haven't been to many other places on the board but that. Yes, yes... I get obsessed.. but that is what started THIS site.. eh? LOL My pain on the left side doesn't necessarily go around my back...it's just really really tender and sometimes downright majorly painful on the left groin side. I've been having more flareups because of the heat. My doc told me that heat is very stressfull on your system. Also when I get really bad low back pain - all the way across and often shooting down one leg, I'm pretty much certain it's my bowel causing the pressure there. It's a pattern I've had. Been through way more "labor pains" recently than I care to think about!!! Since I have the cramps for hours w/nothing even coming out most of the time until I've sweated through a long time of cramping, one thing that sometimes works is, I take some of my Librax and then lay on my left side w/my right knee bent and "if" I'm lucky, I might doze off if I'm medicated enough. That way my tensing with the pain isn't holding things up so much and I then hopefully, when I wake up, then I can go and haven't spent hours sitting on the pot! Funny you mention the antibiotic induced Cdiff. That's how I ended up finally at a GI specialist while I was pregnant with my first. At the time it was just called a "shift to the left" of the bacteria in the bowel where all the good bacteria got killed off and the bad ones took over, but taking different antibiotics wouldn't help it, just building the "normal flora" back up would. I had some problems for years, but it wasn't as severe. I had wisdom teeth pulled and then about a month later it started and kept going like I was losing my insides for several months! Nothing was helping and my primary at the time was a big ole dork because I TOLD HIM I had been eating yogurt (I worked for a microbiologist at the time) and he said he had to check with the dietary dept. at one of the hosp. He calls me back 3 days later and tells me all they said was yogurt and buttermilk. I so wanted to SLAP HIM!!! One of the OB/Gyns told me about the capsule you could get (I'm blanking on the name of it right now..) which had the active culture in it and you wouldn't have to try to swallow all that yogurt when you were nauseous. They kept it refrigerated at the pharmacy. Then my OB sent me to the specialist who couldn't do all that much because I was 5 mo. pregnant by the time I saw him, but he did give me advice on eating etc., and that helped some until the last 2+ mo of the pregnancy when baby and bowel were going round after round with one another and I could barely stand up half of the time! Uggh. Nothing but having the baby was going to stop THAT problem. I'm laughing because I went on and had 2 more kids even though I knew what I was in for, but I was idealistic back and blocked the pain out of my mind. Big surprise during labor #2 when I was swearing like a trucker.. hahahaha. Oh yeah.. but then there was child #3.. just call me a glutton.. but eh.. it's a short time compared to the amount of time the kids are with you and then doing things that make you crazy on the outside and causing flare-ups! LOL Seriously though - I will only take antibiotics unless absolutely necessary and then the least harsh on my system is plain old penicillin. But I swallow at least 3 TB of active culture yogurt with each tablet! I've also had the tablets with lactobacillus in it, but I'm not sure if they work as well as the things which haven't been "dried out" to last in a bottle. I know about the 1/2 rule, too! I remember one of my worst experiences was going to a "shower/dinner" and the cramps started and I kept going into the bathroom but nothing would happen so I finally had to make a break for home and that was one hairy drive home! Herk - the sitz baths are great if you don't want to do the full submerge into the tub. Also, having one of those "donut pillows" that they give you after you have a baby, helps to make sitting more comfortable. You can buy those at any pharmacy. Another problem I've been having for about 8 mo is that I can't tolerate iron supplements for my anemia. The doctor has prescribed the ones that are supposed to be less harsh, but no luck for me. Everyone else gets constipated on iron, but not me! So I end up with a lot of prescriptions unused through the years. Well, here's wishing everyone a better week!
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Hypermom
Member
08-13-2001
| Monday, August 08, 2005 - 1:00 am
Watching, my dh has to watch the hot weather too! He had one dehydration this summer and it was pretty scary. Just an FYI for anyone with Crohn's, Pedialyte was recommended highly by my dh's doctor over the sports drinks or water when dehydrated.
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Landi
Member
07-29-2002
| Monday, August 08, 2005 - 8:23 pm
i go for another sonogram tomorrow, to see how my diverticulitis is doing. today it was the constipation, and every day it's gas gas gas! i'm soooooooooooo tired of this!
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Metoo
Member
02-22-2005
| Tuesday, August 09, 2005 - 9:42 am
Just wanted to let y'all know that I'm hanging in there with my "condition". Like Landi I am so tired of going through this every day. It really helps to read your posts and to know there is someone out there that understands.
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Landi
Member
07-29-2002
| Tuesday, August 09, 2005 - 12:12 pm
right now, i just got back from the doctors, and found out i had a second impaction. now i understand why i was in so much pain. doctor did his "thing" and now i definitely am CLEAN! a little sore, but CLEAN!
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Vacanick
Member
07-12-2004
| Tuesday, August 09, 2005 - 12:26 pm
Right now ... oh poor Landi! I'm sorry your sore but I'm glad the doctor was able to take care of it immediately. I hope you feel better soon!
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Mamie316
Member
07-08-2003
| Tuesday, August 09, 2005 - 12:48 pm
Right now, now that I am grossed out, thanks Landi! LOL
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Watching2
Member
07-07-2001
| Wednesday, August 10, 2005 - 12:43 pm
(((((Awwwwwww Landi))))))))) I'm sorry you had to go through so much pain and are sore, but I sure am glad your doctor was able to help you!!
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Metoo
Member
02-22-2005
| Thursday, August 11, 2005 - 6:47 am
(((Landi)))
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Herckleperckle
Member
11-20-2003
| Friday, August 12, 2005 - 2:05 am
Oh, I haven't been here in a bit and missed some posts! (((Watching))), I am so sorry for what you are going through! Thank you for noticing what's going on with me and for the kind words and suggestions! I really thank you, too, for sharing your issues. It helps to read your story--as I learn from everyone's particular symptoms and experiences. Btw, I was told by my CT gastro doc not to take iron at all, despite my anemia. Too hard on the system. Something Zmom told me was that she takes liquid vitamins and such--much more digestible. (((landi))), I am so sorry to learn you are going through all this. It is no fun at all. (My MIL had problems like that and I remember how painful it was for her--emotionally and physically.) Big hugs, hon. (((Zmom))), I am still looking for articles dealing with anything to do with IBS and pain. Not sure if the (rather old) article below will be helpful in any way, but I am going to post it on the chance that it is. And I will keep digging. Hope your pain subsides and gives you a break, hon.
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Herckleperckle
Member
11-20-2003
| Friday, August 12, 2005 - 2:14 am
Ivanhoe.com article (from their archives) Reported October 13, 1997 Hypnosis & IBS Update Full-Length Doctor's Interview Ivanhoe Broadcast News Interview Transcript with Olafur Palsson, Psy.D., Clinical Physician, Charles Burnett, Ph.D., Clinical Psychologist, University of North Carolina, Chapel Hill, North Carolina TOPIC: Hypnosis & IBS Update What is IBS and how many people does it attack? Dr. Burnett: IBS is a set of symptoms that affects about fifteen percent of the population. It involves primarily pain and discomfort in the abdomen that is usually relieved by defecation, by going to the bathroom. It's accompanied by other symptoms of distress and discomfort in the abdomen after eating. Do you have any idea what the cause is? Dr. Burnett: Well that's not clear, there are a number of ideas. We do know that people with IBS tend to have changes in the colon related to the way sensations are perceived, the way things feel. That there is some change to the lining of the colon. There is some change in the nervous system of the colon. So that whether this is caused by infection or inflammation or what we really don't know. Research is continuing and new ideas are coming out all the time but we really don't know what causes it. Do things like stress have an effect on it? Dr. Burnett: It definitely makes it worse, whether it causes it or not is another issue, but stress is involved and the symptoms of IBS also cause stress because they are very uncomfortable and they are very inconvenient. So, it's a circular situation, stress probably makes it worse, the symptoms of the disease make the stress worse so it feeds on itself that way. s this an easily diagnosed thing or do you think there are more than ten or fifteen percent? Dr. Burnett: Those numbers are taken from large scale studies, epidemiologic studies that are probably pretty good. Only about half the people who have IBS symptoms actually consult physicians for them according to the studies. So there are a lot of people out there with the same types of symptoms who just assume it's normal, that that's the way they are and don't go to physicians. So I think that's probably an accurate estimate of how many people have it. It does have some symptoms that can overlap. Other conditions can have similar symptoms, so it's important to have evaluations to make sure that there is nothing else going on. What are the traditional treatments for IBS? Dr. Burnett: Traditionally, it's been fiber therapy and there are some medications to help reduce spasms in the gut. Relaxation training to help manage the stress whether it comes from the disease or makes the disease worse. Antidepressants have been useful in some cases which we think actually function on the nervous system in the gut to reduce the sensitivity to pain and to sensation rather than acting as antidepressants in that case. Alterations in diet, increasing fiber, having a healthier diet. Exercise, increasing exercise, basically a healthy lifestyle. And if all of these treatments are available why are you supplying a treatment such as hypnosis? Dr. Burnett: Well there's a large population, a large group of people with IBS who really don't respond to the traditional treatments. Who don't seem to improve or who are not improved enough to feel like they actually feel better. Dr. Palsson: And hypnosis has been found in studies in England to be effective with patients who don't respond to other treatments. It has been recorded in several studies in England to be effective in treating these symptoms of people who have not responded to medical intervention. Can you give us some specific numbers and things for the study in England? Dr. Palsson: The majority of patients in three different former studies, to eighty or ninety percent, respond to treatment of hypnosis from four to seven hypnosis sessions. Those sessions are spaced over a three month period. They have been found to be still without symptoms or still improved up to eighteen months after the termination of treatment. So this seems to be quite promising. That is why we are trying to repeat this here. It has not been tried on any large scale in this country. A lot of people might say hypnosis and IBS are worlds apart. Can you make that connection why one relates to the other? Dr. Palsson: It is not entirely clear how hypnosis affects irritable bowel syndrome and that's a part of what we are studying here. We are among other things measuring the psychological sensitivity of the patients with irritable bowel syndrome. We are, in particular, in this study interested in how hypnosis affects pain sensitivity and the pain of patients with irritable bowel syndrome. It is unclear exactly what produces the therapeutic effect. However, it has been found that hypnosis does affect the movement of the gut or intestinal tract. So, it may be directly related to physiological factors rather than just being a psychological treatment. When you say it affects, how? Dr. Palsson: Well people in the hypnotic state have been found to have reduced motility of the gut or intestinal tract and so hypnosis does affect the GI tract directly in a physiological way like that. So it may be that hypnosis has its therapeutic effects both through psychological means and through affecting the physiology of the people who get the treatment. Dr. Burnett: There is also some evidence that the central nervous system is involved in IBS. The sensations that go from the gut to the brain and the sensations that come back down, the different messages that modulate the pain probably are affected by the relaxation and by the hypnosis itself too. So it may act directly on the brain and on the nervous system as well. Ideally what do you hope to achieve with this study? Dr. Palsson: We hope to replicate what has been demonstrated in England, that hypnosis is effective in treating patients with irritable bowel syndrome in reducing or removing their symptoms. We also hope that this will prove to be a treatment that will have lasting effects rather than temporary effects. However, it is too early to tell in our study what the effects are going to be. Which patients are most eligible or best suited for hypnosis and which ones are not? Dr. Palsson: For this study we do not select people based on their hypnotic ability. However, hypnotic ability varies in the population. It is normally distributed which is to say that most people are moderately hypnotizable. Just a few people on the extreme side of highly hypnotizable. For this kind of treatment we expect that people who are suited will be fair or moderately hypnotizable. Dr. Burnett: We also are careful with the study situation we don't want anyone who is taking antidepressants or pain medications or have a significant history of psychological problems or psychiatric problems. What is actually happening to the body during hypnosis in relation to IBS? Dr. Palsson: That is not entirely clear however, there are some findings on the effects of hypnosis on the gut or intestinal tract that suggests what might be happening. My own finding is that hypnosis does seem to reduce pain sensitivity in the gut or intestinal tract. Since abdominal pain is the center symptom in irritable bowel syndrome that might be one way that hypnosis is improving the condition. Another finding is that hypnosis slows down the motility of the gut or intestinal tract, or the movement or irregular movement of the tract. So that kind of effect might also be important. And furthermore, we have evidence of the effect of hypnosis on psychological factors from fifty years of research. So if these factors are going to be important we don't know and a part of what we're trying to do is to find out which are the important ingredients. Dr. Burnett: One of the problems with IBS is that it is a psychologically distressing syndrome. People do become anxious, they do have difficulty with the focusing on the symptoms, and the pain and the distress. Hypnosis has been found to help people re-channel their concentration, to focus their concentration on something other than their symptoms and kind of help them to manage their attention and what they pay attention to. So we're hoping on a psychological level that, that will help people to cope with the symptoms as well as to reduce the actual level of symptoms that they have. Dr. Palsson: In one prior study in England it was demonstrated that hypnosis was much more effective than psychotherapy for the same length. Even psychotherapy combined with a placebo pill, an inert pill that has an inactive ingredient, so something seems to be effective in hypnosis that this is more than just the effects of regular psychotherapeutic contact. END OF INTERVIEW
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Herckleperckle
Member
11-20-2003
| Friday, August 12, 2005 - 2:34 am
Ivanhoe.com article Reported September 20, 2004 Bacteria may Cause Crohn's (Ivanhoe Newswire) -- The same bacterium that causes an intestinal disorder (Johne's disease) in cattle, sheep, and goats may be a cause of Crohn's disease in humans, according to a new study in The Lancet. Crohn's disease, a form of inflammatory bowel disease, has been diagnosed in about 1 million people worldwide. The disease shares some similarities with tuberculosis, paratuberculosis and leprosy. Researchers at the University of Florida in Gainesville tested the blood of 28 individuals with Crohn's disease, nine with ulcerative colitis, and 15 with no inflammatory bowel disease for the presence of a bacterium called Mycobacterium avium, subspecies paratuberculosis (MAP). Results show the bacterium was found in about 50 percent of the people with Crohn's disease, in 22 percent of people with ulcerative colitis, and in none of the people without inflammatory bowel disease. While the study does not indicate that the bacterium is the primary cause of Crohn's disease, the authors conclude: "We detected viable MAP in peripheral blood in a higher proportion in individuals with Crohn's disease than in controls. These data contribute to the evidence that MAP might be a cause of Crohn's disease." SOURCE: The Lancet, 2004;364:1039-1044
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