Would like to "chat" with people that suffer from this disease!
Hi King for a Day,
I have Crohns Dz. have had it for 40+ years, Ulcerattive colitis is some what the same as Crohns Dz. It can effect any part of the body from the mouth to the rectum. It's not a simple illness to Dignose, I went through 3 years of testing, back when I had it they called it ileitis, which is at the end of the small bowel. By the time they caught my Dz. I had to have surgery and 4 feet of the small bowel removed. (but that is another story)
I am now 55 years old, dignosed at age 8, so I have gone though my life with this. All I know is the doctors just kept shoving pills at me and nothing worked, now I am in somewhat of a remmission. I learned that diet plays a large role in this Dz. and dairy products are the worst. I have not had milk since I was 13, it is hard to go without some of your favs but if it makes you feel better and your not runing to the potty all the time it is worth it. Stress is a major factor, if your stressed out all the time about it the flares seem to come more often. Try to relax and meditate, your brain is a very powerful tool. I have learned to control my diet and just stop worry all the time. I have actually gain 10 pounds and look better than I have in years. I was always very thin and pale.
Keep your chin up and just try altering your diet. Try something for a few days if it bothers you then stop and then try again, do this with red meats and foods that make you bloat, like cabbage, onions, green peppers ect... I really hate the bloating part it makes me look like I am 12 months pregnant LOL. I hope this has helped alittle. If you have any questions I will try to answer them, I am not a doctor but my husband says I know alot about this DZ I could almost be one. I have lived my life with it and finally after all these years I feel better, worry less and don't stress over it. It is hard to find what works for you but keep trying. I hope this has helped alittle, you will get better, promise..........
Thank you so much for your reply. I don't think you could ever know how much you have inspired me You are an angel. I was diagnosed 8wks ago and of course the tests and appointments take a while to get through so the suffering had been going on for months. I felt like I was dying, I have never felt so weak and fatigued on top of all the "yucky" symptoms. They put me on 6 wks of Asacol 800 which took more than three weeks to begin making a difference but at the end of the 6wks told me to stop and see what happens.....easy for them to say. Within three weeks the symptoms were back full force and in addition I have been under two weeks of extreme stress. I had researched and learned about many things that I should do but you have convinced me that the steps I have taken will make a difference and this will be a thing of the past. At the moment it just feels like it will never end so your response was perfect timing. THANK YOU I will let you know how things progress.
The Following User Says Thank You to King for a Day For This Useful Post: Saddie098 (08-26-2011)
Hi, I hope things go well for you and you feel better soon. Your kind words mean alot to me, if I can help just one person suffering from this DZ. it's worth everything. Please let me know how you are doing and I will keep you in my prayers.
Hi q,
They were not able to get to the upper third of the colon due to the inflammation. I have to go back in October to try again. In the lower colon and rectum there was moderate to mild UC and some areas showed Crohns. They put me on Asacol 800 x 6 a day for six weeks. It took 3 wks to begin working...after the six they told me to stop taking the meds and see what happens. I was ok for 3 weeks however dealing with a lot of stress and then it came back full force. The worst part for me is the pain in the "butt" area and extreme fatigue. I have done a lot of research about stress and diet but have not had the chance to see any benefits yet. I can see how a person could become depressed dealing with this and if it is mild or moderate I have trouble imagining what a severe case would be like.
Thanks for you interest. Any suggestions are greatly appreciated.
Hi...actually UC and CD don't happen together, it's one or the other. I would suspect the "colitis" diagnosis suspecting to be Crohn's means Crohn's Colitis.
Will the doc be setting you up for a small bowel follow -through to determine if there's any inflammation there?
Are there any other tests you've had done?
Do you have a copy of your biopsies report?
I'm puzzled that you have no rectal meds in your regimen considering where your inflammation is. The oral meds will NOT treat the lower part of the colon or rectum. Definitely something to get back to your doctor about.
food intake is subjective, it's difficult when one has inflammation in the colon since most everything will be rushed out quickly.
Food won't heal your inflammation, but if you eat for comfort, foods that are less likely to cause excess gas, cramping and discomfort would be best, at least in your waking hours.
What's your diet like at this point?
q
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It's all a matter of perspective!
Hi q, That makes sense! It confused me a little too. He was going through a list of all the sections the biopsied and there was only one area he used the word Crohn's. Thanks for making sense of that........the overall diagnosis was "Mild to Moderate Ulcerative Colitis".
I am going to call my Dr. Monday and request rectal medication as that is where 80% of my discomfort is right now.
The tests that were done were blood tests, endoscopy, colonoscopy, and finally feces culture.
At first I removed most fibre from my diet, reduced milk products and did not eat red meat or raw vegetables. When they removed me from the meds I went back to a normal diet which I think was a big mistake. Because the symptoms came back with such force I have now placed myself on the "diet" and am being very strict about it, in addition I am keeping a food journal and have made an appointment with a dietitian to discuss proper supplements. I have also researched meditation and have enrolled in Yoga. I have look at the stresses I can control and taken steps to remove and reduce all possible. I have explained to my family that my system just cant deal with large stresses and they will have to step in more to deal with things.
I think I was hoping it was just a little problem when diagnosed and that I could control it and it would'nt be a major thing ...... when it came back to this degree I felt the full impact physically and mentally. I have really had to force myself to look to the positive and "suck it up" that this is a big part of my life now. Time to take care of Me!
Thanks for your feedback......I can't tell you how "uplifting" it is to talk with people that have suffered and experienced the same or worse.
q
Actually, U.C. Crohns DZ are all IBS. It will do well to watch your diet and stress level no matter were your IBS is located. It is a DZ that is very diffcult. Do you suffer for IBS? Food will not heal your inflammation, but it will help not to eat the foods that causes things to flare, when food passes through the infected area thats were the pain comes from, clear liquids, then soft foods and then trial and era with other food always helped me during a flare, I have lived with it (IBS) Crohns whatever for 40+ years, there is no cure but a change in life style may be the key for us that suffer from IBS.....
^^Actually, they are both Inflammatory Bowel Diseases. not IBS.
One can have IBS with either UC or CD.
I have Ulcerative Colitis limited to rectosigmoid area, diagnosed over 22 years ago. My treatment/maintenance is oral/rectal 5ASA.
Food for UC compared to CD is different depending on where one's CD is. Since it can happen anywhere from mouth to anus (not rectum) and affect the entire wall of the digestive tract not just the mucosal and submucosal lining as in UC, there can are different issues that can arise.
Food...subjective as I mentioned. It's a learning process. One needs to make sure that medications cover the both ends approach with UC, since it starts at the rectum and continues upward.
q
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It's all a matter of perspective!
The Following 2 Users Say Thank You to quincy For This Useful Post: King for a Day (08-27-2011)
King, you need to get a copy of the biopsies, it will state in common with or follows the pattern of, or something like that.
Regarding the CD suggestion, you might be in the area of indeterminate where it's not clear...but that diagnosis usually ends up being CD anyway. If CD follows the pattern of UC, where the rectum (not anus) is involved and there are no skip patterns, it's difficult to know until the disease shows further traits.
You should never have been taken off medications, i'm puzzled by that, for a "let's see what happens".. makes no sense to me.
Make a list of questions...I can help you with that..for you to ask your doctor for a more definitive lead on what's happening, where it is located exactly, plans for the future medications, how they work, etc.
Regarding stress relief, food intake, etc....trying your best to make it as balanced as possible helps.
q
__________________
It's all a matter of perspective!
King,
I am sorry if q and I are confusing you. IBS is "Irritated Bowel Syndrome" as explained by my gastro. whom I been seeing for 18 years now. CD,UC anything that effects the bowels, ( small or large).Mine is located in the small bowel, which I had 4 feet of it removed because back in the day when I found out I had it that was all they could do, now I suffer from skip areas that's were my diet plays a large role. I wish you the best and "diet" for me is the key. Again everyone has there opinion on how to manage there bowel problems, to this day it is a mystery on how, where, when it all came to be. Please take care of yourself and feel better soon.
I am wondering if part of the problem is that is still the General Surgeon that completed the tests that is making medication and further test decisions at this point. Perhaps I should be seeing a specialist for treating the disease now that it has been diagnosed. What type of doctor would specialize in the treatment of the disease? This is my first question for him when I go back. I am scheduled to go in October but am now thinking of making an appointment in the next few weeks to discuss my medications since you mentioned the rectal medications and how much discomfort I am still in. My second will be to request a copy of the report as you mentioned. Did I mention how much I appreciate your feedback?
Hi..you need to see a gastroenterologist. Why were you initially sent to a general surgeon, to do your c-scope?
I caution you one thing...to not have anyone put you on prednisone at this point. This is my own opinion, but it's a strong one.
So...you aren't on any medication at this point?
Do you have a GP? and is it he/she that sent you to the general surgeon?
You are most welcome for the replies...I have lots more questions, however..lol.
Just to make it clear regarding Saddie's post, UC and CD are not under the category of IBS (mechanical dysfunction of the colon), They are IBD (organic diseases, some school of thought believes them to be autoimmune). Two different entities entirely.
q
__________________
It's all a matter of perspective!
Hi q,
Thanks for making sure the distinguishing differences between the IBS and IBD. I am an information freak..case you didn't notice. I believe that knowledge is power, so I immediately joined the Crohn's and Colitis Foundation to receive all the information they had available...an they had a lot both online and mailed. However they do not have a active support group in my area which provides the interaction with people that are dealing with the disease.
Because of Dr. shortages and the fact that I am stubborn and do not go to the Dr. until absolutely necessary... I could not get into my doctor and ended up in urgent care. Normally this is not the ideal place to be with anything other than a cold or flu, the doctor I saw was fabulous, he did no examination just listened to what was happening and told me he wanted to have thorough examination of my gastrointestenal system as soon as possible. He referred me to the Reimer Clinic for the tests.....which they have been great through the diagnosis steps but I am wondering how effective in treating my symptoms. I have an appointment with my GP Sept 7th, the first appointment I could get
My biggest concern in the immediate ..... and sorry its yucky to talk about but I'm sure you are understand...is the large amount of muscous that come out. Every bowel movement which is approx 3 - 7 a day has some stool, small bits of blood and mostly mucous. It just doesn't seem right... it seems like my insides are falling to pieces and coming out. I know that is not the case....its just very unpleasant and hard to get your mind positive and stop worrying when it is so constant.
So Counting the days until a doctor can see me and then I will talk about the rectal medication you mentioned as currently I am only being treated with Asacol 800 x 6 a day.
Did you find any relief with taking Tylenol for the cramps and rectal discomfort?
Hi..it's unfortunate about the waiting periods, but it does sound as though the process has been a positive one rather than a doc saying "it's probably only hemmies"...sheesh.
Since you are on the Asacol and your inflammation probably affects most or all of your colon, the 4800mg Asacol daily (while a max dosage) will help the inflammation regardless. I'm pleased that it's a 5ASA and not prednisone...truly.
What are the incriment dosages...twice, thrice?
The rectal med I would sTRONGLY suggest to request would be Salofalk retention enemas. The 4g dosage. It's to be used nightly until your flare is finished, then tapered to every second night for a while, then every third for a while then to a maintenance dosage. It's believed that the twice a week maintenance is the best..but some doctors want patients to taper off...eventually one realises the value of them and stays at maintenance.
You might be able to taper the oral to maybe 4 daily (3200mg) if all is clear as per a scope, for maintenance and increase when flaring.
Regarding the ccfc...there is value to it, but be prepared to many to request your time for volunteering and being a part of something. I went to the one in my city, ONCE...was told how LUCKY I was to only have UC and then I was asked by about 10 people about volunteering my time, etc.
So, my experience was overwhelming, and I walked out of there with a resentment regarding their attitudes about my own suffering (I don't like using others' as a measuring stick for my own issues) and decided I didn't need support as such.
I also cannot set myself up for extended demands of others...dealing with UC and my personal demands are all I care to have. It's not part of my needs, but others get great rewards...subjective. (I even have a no soliciting sign on my door/mailbox...which gives you the idea of what I mean).
I have a great doctor, my med regimen is tops and I hope it continues for a very long time yet.
Regarding your insides falling out in pieces, that's the blood, mucous and unformed stool. With colon inflammation, things will be rushed out without time to form...which is so much easier to expel with an inflamed rectum.
Since UC starts at the rectum and continues to inflame upward...it heals downward and the last to heal is the rectum. Without dealing with that part, and with that area left inflamed, the stool consistency will change to more formed even to the point of constipation.
It's a learning curve regarding healing, but that information will lead you to mind symptoms as to when you'll start flaring. But it takes the experience to gain that knowledge. Having the medications to deal with flares, and the most adjusting will be with the rectals....it's a freedom if you have the support of your doctor and the continued refills.
Being proactive in your care is key...it was encouraged by my doctor, and I encourage other UCers to do the same. Some are met with resistence regarding rectal meds...mostly, methinks, is because there is low patient compliance and patients just want it dealt with quickly.
But, know what you wish for, because the med options carry many side effects, hence my opinion about prednisone, Not that it's not a miracle med, but I know of may who are pred dependent and cannot get off without much difficulty.
So, I'll end it here...ask more questions and I can answer. I can offer many suggestions based on my experience and others' experiences I've read and shared with.
Not to say all can take 5ASA meds, one must have liver/kidney function testing done at least once or twice a year, but if you can take the med, it's still the best for long-term effect, although it's not without the commitment.
The 22+ years of dealing with my UC has been long, but as I look back, it's not been as bad as it was...
quincy
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It's all a matter of perspective!
Last edited by quincy; 08-28-2011 at 02:49 PM.
The Following User Says Thank You to quincy For This Useful Post: King for a Day (08-28-2011)
How severe are your symptoms? Are you currently in a "flare" or "remission"? Are you on any meds? I have found that Saddie and Quincy on this health board have had a lot of helpful information.
I am just starting to wrap my head around the whole thing. I was hoping at the time of diagnosis and after a few weeks of meds that it was just a small little flare up brought on by something silly...who knows what.
There is still and won't be answer to the "what" question, but one things for sure its not a silly little thing. I am a very positive person but have to admit the past few months have been a struggle. The overwhelming fatigue does not help with the mental process. However, I am determined to "take care of myself" and live my life as healthy as possible. I joined the Crohns and Colitis Foundation and they sent out a lot of information which helped me understand a lot of things. Talking with people that have struggled with this disease is very helpful and encouraging (Nothing is better than knowing you are not alone). I have made an appointment with a dietitian to help with the nutritional supplements that I should be looking at. I have signed up for Yoga..will let you know how that works out, and eliminated as much "Stress" as I have control over. My family has been very supportive is helping with this. I know there are times that I become very irritated with friends and family that just don't understand what I am dealing with and the truth is they don't. Many feel it is IBS which of course it is not. When I get irritated I give them the brochures on the disease, symptoms etc and tell them if they care to know how I feel educate themselves. This has helped as the ones that took the time and read had a much different outlook....because they really did not understand.
I have faith from the people that have chatted with me here and the information package that I received that there will come a time when I will feel better...and maybe a few times that I don't but at least I know what I'm dealing with now.
K
How severe are your symptoms? Are you currently in a "flare" or "remission"? Are you on any meds? I have found that Saddie and Quincy on this health board have had a lot of helpful information.
I am just starting to wrap my head around the whole thing. I was hoping at the time of diagnosis and after a few weeks of meds that it was just a small little flare up brought on by something silly...who knows what.
There is still and won't be answer to the "what" question, but one things for sure its not a silly little thing. I am a very positive person but have to admit the past few months have been a struggle. The overwhelming fatigue does not help with the mental process. However, I am determined to "take care of myself" and live my life as healthy as possible. I joined the Crohns and Colitis Foundation and they sent out a lot of information which helped me understand a lot of things. Talking with people that have struggled with this disease is very helpful and encouraging (Nothing is better than knowing you are not alone). I have made an appointment with a dietitian to help with the nutritional supplements that I should be looking at. I have signed up for Yoga..will let you know how that works out, and eliminated as much "Stress" as I have control over. My family has been very supportive is helping with this. I know there are times that I become very irritated with friends and family that just don't understand what I am dealing with and the truth is they don't. Many feel it is IBS which of course it is not. When I get irritated I give them the brochures on the disease, symptoms etc and tell them if they care to know how I feel educate themselves. This has helped as the ones that took the time and read had a much different outlook....because they really did not understand.
I have faith from the people that have chatted with me here and the information package that I received that there will come a time when I will feel better...and maybe a few times that I don't but at least I know what I'm dealing with now.
K
Would like to "chat" with people that suffer from this disease!
Hello there. I'm just signed up for this board for another health problem, but thought I'd check in with my fellow UC sufferers. First, let me say how sorry I am you were diagnosed with this. I was diagnosed with UC in my early 20's (I am 46 now) after years of undiagnosed issues. After many, many years of hospitalizations, alternative treatments, conventional medicine (prednisone, yuck) and losing jobs due to my illness I finally had my large intestine removed. Though I was told by many fellow sufferers for years that I should have my colon removed because I would feel better, I realized that is a very personal decision. I chose to live with it as long as I could before I finally became so sick and anemic from bleeding that I had to have it removed. I had a very good surgeon who worked with me and made an internal "J" pouch so I would not have to live with an external pouch. However, I did have to have an external pouch on several occasions for complications before, during and after my J pouch.
I hope you are faring well and you are successful at keeping your symptoms under control for the time being. I have so much information to pass along to you, so if you have ANY questions, I would be happy to help or chat with. Be well!
Newly Dignosed - Ulcerative Colitis 
You are an angel. I was diagnosed 8wks ago and of course the tests and appointments take a while to get through so the suffering had been going on for months. I felt like I was dying, I have never felt so weak and fatigued on top of all the "yucky" symptoms. They put me on 6 wks of Asacol 800 which took more than three weeks to begin making a difference but at the end of the 6wks told me to stop and see what happens.....easy for them to say. Within three weeks the symptoms were back full force and in addition I have been under two weeks of extreme stress. I had researched and learned about many things that I should do but you have convinced me that the steps I have taken will make a difference and this will be a thing of the past. At the moment it just feels like it will never end so your response was perfect timing. THANK YOU I will let you know how things progress.
