I'm glad to hear from others that the lack of energy is common. This may be an urban myth, but I read something that was supposedly by an endocrinologist that when going off prednisone, if there's...
HA! re: the stuck inside, but I hear you. Thanks MUCH for the info on water. I just bought some Smart Water but forgot the Pedialyte... still have several bottles of Vitamin Water, too. My...
Hi Liz, Thank you! My ileostomy is permanent, since my surgeon said he wouldn't do a j pouch on anyone over 50, and I'm 62. I have been thinking about fluid intake, thanks for mentioning it. Why no...
Hi all, After several years of trying every method I found or could think of to deal with my UC, I had an ileostomy March 25th. For some reason, my laptop won't allow me to log on to Healingwell, so...
Thank you both for your input. I'll look into the midi bag size when I meet with the wound care nurse. It just didn't make sense to me to have just one size bag. We're all built so differently....
I've been a UC'er since 2007 and am now looking to likely having and ileostomy with a possiblity of J Pouch (to be determined after I meet with a surgeon). After looking at a care kit with a...
Thank you ItsAlwaysSomething. I appreciate everyone's input here and am feeling much more empowered and knowledgeable about the protocols that are being used in traditional medicine for UC. To me...
I had my remicade infusion today and as days go it was nearly perfect. During the infusion, I showed my np some of the research I'd been reading, and in particular she commented on...
In my restrictive diet phases I've used it. Mostly I'd say it tastes icky so it's not worth it. Oddly enough in the hospital they ok'd promise margarine for me, and I see no redeeming qualities in...
I've been on several courses of prednisone and all seem different. I'm on the highest oral (75 mg now) before I taper tomorrow, when I find out what my doctor suggests. This course I definitely have...
When I went into the hospital I was flarish, I'd say... frequent runny D, no blood, urgency. I frankly thought it was C Diff although those tests showed negative then. I improved considerably when on...
I was nervous and anxious riddled for my first infusion, by the second it was a breeze. The third I fell asleep. uc logic is right. You just unplug the machine and go. I don't personally feel...
BTW, I think the decision for surgery has a LOT to do with age. What I'd do as a child, teen, young adult, or even middle aged would likely be a whole lot different than it does now that I'm entering...
Many many thanks all. ItsAlwaysSomething, that's exactly the kind of article I'm looking for. I'm approaching the whole issue almost in depth as I did my masters thesis. I have access to my some good...
I'm hoping for information and scholarly articles related to low level dysplasia. I've browsed and saved several from other posts, but suspect there is probably more good information available. I was...
I just want to say I love this place, all of you, your wisdom and help. Just to make this short as I can, I've been in the hospital 2 weeks and was DX'ed with C Diff during a flex sig. I'm on...
Thanks for your thoughts, everyone. Just one day on 40 pred so far isn't doing the trick yet, but I know enough to wait a few days to see if it effects this flare. During the day I'm doing fine,...
Looks like I may be at the end of my Remicade treatment. Probably built up antibodies. It kept my UC at a mild to moderate level for almost a year although I was also on a long taper of prednisone...
I started pred again today, too, lemonhead. For me, this means I've probably already built up antibodies to Remicade. It also means I can't have the cataract surgery I had scheduled June 5 and who...
Since a very slow taper off about 8 months of prednisone, completely off Jan. 30th, I've been depressed, fatigued, anxious, lost 11 pounds, nauseous, dizzy, trouble concentrating, and a few other...
In addition to AZY's suggestion, there are movements in the US to incorporate integrative medicine, ala Dr. Weil, which approaches the whole person. There is a website where you can find one of these...
Near Denver, Colorado and loving that we're having an early spring...
I pretty much agree with ucwarrior's thoughts. UC is like life, you don't know what will happen from one minute to the next. And it's way too easy to obsess on all the possible answers to what this...
I think bootstrap has expressed more closely what I understood from my GI. He did NOT say that IBS causes UC in any way or that there is necessarily a link that because someone has IBS, no matter how...
I have been using some mind body approaches and am convinced of the mind body connection with my UC. Right off the bat, I want to say that one approach will not be right for everyone, anymore than...
I have never tried any adrenal supplement, but I have done a little research on the adrenals and adrenal fatigue... I suspect that some of us UCers may have this deficiency. Otherwise why would...
What blood test is used for colitis? There are different kinds of colitis, but I don't know of any blood test that would diagnose it. I think you should get a second opinion and find a doc who will...
Whether it's from Remicade, bad days, my age or what, I also have problems with being cold, usually from late morning to evening. Showers warm me up and so does being out in the sun....
In a perfect world, I would agree with you about not needing multi vitamins. However, from my research, our food chain is highly suspicious, and how do we really know that what we're eating (no...
I think it is different for everyone, Gonk. My GI team seems to focus on dairy as an irritant, so I pretty much avoid it and I miss cheese! Honestly, as much as I'd like to identify one food, one...
I'm at 4 1/2 years since diagnosis and it's gone from mild left sided to severe pancolitis. I've been at a milder level for about a year, after a huge flare and hospitalization last May/June. When I...
Basically, I think the GI was telling me that if we have ulcerative colitis, we also have IBS. I had IBS diagnosed many years ago, too, took bentyl for awhile, etc., but most of the time did ok, just...
I think I had the slowest taper ever, from 60 mg last June to 1 mg, and finally off in January. I ditto the slow taper approach. Every time I tapered to a lower dosage, I noticed some symptoms, even...
I may be set for a scope in June again, and it will be interesting to see the results. In the meantime I'm doing gobs of things to address the trauma/IBS aspects, including diet/nutrition (mostly...
Hi all, It's been awhile since I've posted here and lots has happened on my UC journey. I changed my sig line to reflect some of what I'm currently doing, and seem to be at a low level of disease,...
Gosh mom2panda, I'm so sorry you're going through this too. We're not exactly in the same boat but some of it is similar. Has your GI thought of putting you in the hospital or on IV pred to settle...
I hope to be here more frequently but haven't been around for awhile. I had a whirlwind plunge into a severe severe flare at the end of May and ended up in the hospital for 2 weeks, with a very...
bananagirl, I've been out of the hospital for a week (in 2 weeks for a severe flare), was on IV 60 mg pred while in and now 60 mg oral the past week. Last week I went to a nutritionist who suggested...
While I am doing remarkably better with my UC symptoms, I've had at least a couple of days that exhaustion nearly overwhelmed me. But then my lifestyle has become pretty taxing, taking care of my 10...
Ellen, I'm bringing this back because I've been doing some research on DHEA and thinking of taking it, along with other adrenal support supplements. Have you tried it? Has it helped? How was your...
Good for you, Christine, and getting your life back! I'll be following as things go along, and it sounds like you have really great confidence in your doctor and your decision....
It was in our newspaper today, only I think said that people on them have a 25% greater chance of C Diff. I've been taking them twice a day for years and years too but got suspicious of them a few...
I wish we could come up with good responses for these people with unsolicited advice. Although it does make me much more appreciative of those people who are truly understanding....
Thank you so much for your feedback, all. I will definitely visit JPouch-org. I hadn't really thought about going the JPouch route, just straight ileo, considering my age. But gosh, having this...
Do you think you might have been dehydrated? I try to keep Vitamin water around even when I'm in relatively good shape, but especially when I'm flaring. It helps hydrate and gives some extra...
Hi folks, I'm wondering about having surgery at my age, and how anyone who is "older" has done if they've had surgery past, say over age 55. Generally I have the idea that mostly younger folks are...
Wow, you sound wonderful and in such a short time since your surgery! It's great to hear such upbeat news....
I eat at least 1/2 banana every day. Especially if you're flaring and getting at all dehydrated, it will help your potassium level. You can have too many though and too high a level of potassium...
I have had and still sometimes have pain in the right side area you describe. From what you describe, it does sound exactly like the gall bladder pains I had before I had it out 9 years ago. But, I...
It might be coincidence or it might be the vitamin. Centrum have that heavy coat, similar to asacol, and I didn't want to put any more stress on my colon, so I switched to gummy adult vitamins. You...