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My UC story ( former troll now a part of the group.)

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Posted 3/8/2012 9:51 PM (GMT 0)

Hello to everone,

I want to first of all thank all of you who take the time to post here. I have spent several hours of time reading over many of your stories and thought it would only be fair iof I post and help to contribute to battling this horrible and unfortunate thing called Crohns/UC. My story beings like this.

Nov 2011 I started to feel dizzy and within about 2 hours I was in bed and had severe lower back pain. I attributed it to sciatica a my wife suggested staying in bed with the heating pad and taking some advil. I did this for 3 weeks. During that time there was one point when I needed her help just to go walk to the bathroom. Slowly I started to be able to walk again and nausea went away and with some exercise and stretching I was able to function. All this time I had no sysmtoms of stomach issues like D or cramping or really nothing that would make me think it was my sciatica. Thanksgiving rolled around and I was at my cousins house and had a few beers and had too much to eat of course and remember coming home and not feeling well and went straight to bed. I slept it off and the next day seemed fine. One week after this I began to feel nautious and have dizzy spells. I thought I had the flu or something but then it came and sorta went that day. Within 3 days of this starting my nausea got worste and I noticed that I wiped blood after going #2. I was scared to death as I knew now I had a bad infection breweing. I told my wife about the blood and how I felt and we both thought it was best I go to the emergency room. Off to the emergency room we went. After 7 hours (cat scan blood tests etc etc)they diagnosed my with diverticuilitis and prescribed me flagyl and one other antibiotic which I cant place the name of now (they both made me sicker). The doctor at the hospital told me to take them all for the full 10 days and to follow up with my gastro that very next Monday. This was a Saturday. I made an appointment with my GI and withtin two weeks I spoke to him. Told him I was feeling fine following the of antibiotics which I was. He checked me over and said he is questioning the Diverticulitis diagnosis becuase I would have alot of pain when he pressed in my stomache. I had to agree with him also. 1 week after the antibiotics I started to feel nausea again and was waking up at night when my bowels started to move which was a nightmare. I felt so sick when this happened. Calle the doctor the next day and He prescribed my more flagyl and one other I cant think of the name for it which I took for 5 more days. He scheduled me for a colonoscopy to check things out which was done on Feb 2 2012.

After the colonoscopy he told me I had a 4cm section of Mild colitis in my lower left side colon and prescribed me Asacol 800 hd. I took them for on month 2 pills 2 times a day. They seemed to work. Presently I have no more nausea and feel over all pretty good but have lost weight form the antibiotics making my appetite poor. I am currently taking Natren probiotics and have just received some Psyllium seed powder which I started today. I really hope this doesnt get worst and it is as bad as it will get but in the back of my head I am leary of it. I will do whataver it takes to keep it at bay. My GI told me he will want to do a colonoscopy in 1 year from now to see howthings look. I guess this is standard procedure? For now I will keep learning form you all and keep hope alive though all of you generous people.

Thanks for all your ears.

Steve

Male 46 DX'd Lower left UC 4cm section Feb 2 2012

1st month after DX Asacol 800 HD 2 pills 2 times a day.

Currently taking Asacol 800 HD 1 pill 2 times a day.

Natren brand probiotics

Psyllium seed powder ( just started today)

No blood in stools now and have normal bowel movement at most 2 times a day. Most of the time once in the am. Asacol seems to work but for how long.

Thoeries:

I releive beleive the issue is a inbalance of good bacteria for whatever reason in our guts allowing this to happen.

I also beleive this Fecal transplant thing has has alot of validity to it.

Posted 3/8/2012 10:09 PM (GMT 0)
Hello & Welcome to HealingWell!

I am so happy you've managed to get things under control. Many people do well on Asacoll long-term. Hopefully you can keep things at bay indefinitely. Many of us use rectal medications, either on-going or as needed when we notice symptoms. I like to have them in the house just in case I have symptoms, that way I can try to stay ahead of the flare up (sometimes easier said than done). I have fairly regular colonoscopies. I haven't had them yearly but I have had flexible sigmoidoscopies between colonoscopies. I think how often your scoped is mostly due to your GI. My GI likes to take a look every so often to see how things are looking, especially if I am having symptoms but she's usually accepting of a sigmoidoscopy which is a lot easier to prepare for. Most UCers get a scope every other year and then every year after 10 years with the illness I think.

Thanks for joining us :)
Posted 3/8/2012 10:21 PM (GMT 0)
Welcome to the forum. I'm glad the Asacol is working for you. I have left sided colitis also (not sure how bad at this point) and when I was first diagnosed I went into remission quite quickly. If you do start to see any symptoms another thing you may want to give a try are the Rowasa enemas. I find them extremely helpful. :)
Posted 3/8/2012 10:30 PM (GMT 0)
Thank you for the warm welcome notsosicklygirl,

I hope I dont have to get scoped that often and I guess I would be happy if it was only once a year. Dioes a flex sig make you prep like a full colonoscopy therefore ridding your colon of any beneficial bacteria? I do also understand that everytime you have a colonoscopy you basically rid youself of all the good and bad bacteria and hence having to start over again. If the issue is an inballance how would it ever get a hold if it decided to do so if they expect to do that this often? I guess I am reaching now and do not have enough evidence to say that an inbalance is the issue in the first place. I guess that is why most take probiotics so I guess I am a little confused as well as the traditional medical community is with this. They cant tell you why this happens one way or another so who is to say really. Sorry I get so upset with the establishment at times and dont mean to go off on a rant. I I have read your diagnosis and want to send you a hug as I see you been through alot. I have read your post many times before and again want to thank you for your contributions here. I cant tell you enough how they have helped me. :-)

Steve


Male 46 DX'd Mild Lower left UC 4cm section Feb 2 2012
1st month after DX Asacol 800 HD 2 pills 2 times a day.

Currently taking Asacol 800 HD 1 pill 2 times a day.
Natren brand probiotics
Psyllium seed powder ( just started today)
Prayer
No blood in stools now and have normal bowel movement at most 2 times a day. Most of the time once in the am. Asacol seems to work but for how long.

Thoeries:
I releive beleive the issue is a inbalance of good/bad bacteria for whatever reason in our guts allowing this to happen.
I also beleive this Fecal transplant thing has has alot of validity to it.
Posted 3/8/2012 10:37 PM (GMT 0)
Thanks Sheri,

I will certainly keep that in mind and thanks for the warm welcome. I look forward for being a part of this and will make a point to post my progress and any suggestions I may also find works for me. Anyone have to give up alcohol completely with UC? I know I have a problem with beer and really dont plan on drinking it anymore..I guess I will have to just keep it all to a moderation if I decide to have a drink or two. My GI told me unequivically alcohol is not the cause if this and if I want to have a drink or 2 to go ahead. I guess that means it is ok but I am scared to death.

Steve


Male 46 DX'd Mild Lower left UC 4cm section Feb 2 2012
1st month after DX Asacol 800 HD 2 pills 2 times a day.

Currently taking Asacol 800 HD 1 pill 2 times a day.
Natren brand probiotics
Psyllium seed powder ( just started today)
Prayer
No blood in stools now and have normal bowel movement at most 2 times a day. Most of the time once in the am. Asacol seems to work but for how long.

Thoeries:
I releive beleive the issue is a inbalance of good/bad bacteria for whatever reason in our guts allowing this to happen.
I also beleive this Fecal transplant thing has has alot of validity to it.
Posted 3/8/2012 10:44 PM (GMT 0)
Hi and welcome. I did giggle at your use of troll - they're people who sort of make up an identity and just come on to cause problems. You were a lurker. :) At any rate I'm glad you're feeling well and hope the Asacol continues to work. I've only had one scope since diagnosis and did not find I had any issues afterward. My guess is that some of the bacteria manage to catch hold. I also have no food issues that I did not have prior to UC. I am not a heavy drinker but can have a beer, glass of wine or two with no issues.
Posted 3/8/2012 10:56 PM (GMT 0)
Yes! Lurker! thank you fruitgirl :-) I stand corrected again, but I agree much more appropriate.

Food is something I now also have to keep an eye on unfortunatly.

Thank you for the warm welcome.

Steve
Posted 3/8/2012 11:48 PM (GMT 0)
Welcome there twiggs i was also a 'lurker' and i too joined after finding the comments and suggestions here to be invaluable (probably better than my GI's!!). I hope you continue to be in remission on asacol.
I would recommend that with this disease you try to be as educated about it as possible as the medical community is pretty c**p at it (excuse my language) and all they know how to do is prescribe asacol, prednisone and immunosuppresants.
I have learnt that i need other natural supplements to help me beat this disease: i also take tumeric 1g daily and a probiotic yeast called saccharomyces bouldarii which is probably the best (second to VSL#3) at dealing with colitis. It also doesn't get destroyed by antibiotics which is great.
I stopped the turmeric back in december and in less than a month i got proctitis!!! now im back on it again.
Posted 3/9/2012 12:58 AM (GMT 0)
Thank you for the kind words Steve.

Prepping for a flex sig is much easier than a colonoscopy. I had to do 2 fleet enemas the morning of the procedure and that's all! The problem with a flex sig is that you can't see the whole colon so if you're inflammaed beyond where it can reach, you won't know the extent. A colonoscopy is a much more thorough test. I actually prefer a colonoscopy because you're sleeping. With the sigmoidoscopy, you're awake and it feels like intense gas pains. I can hardly tolerate it, others don't mind it so much.
Posted 3/9/2012 1:23 AM (GMT 0)
twiggs,

Welcome to the forum. I'm so glad you've found us and have now joined us, although I am sorry you need to because of your UC.

I'm glad you finally found a good GI, who was able to diagnose you properly and prescribe meds which are helping you.

What are you doing about  diet?

Posted 3/9/2012 1:35 AM (GMT 0)
Hi Steve,

I'm so sorry that you have this horrible disease but at least your doing good on the meds.

Your story sounds a lot like my son's who was diagonised in Sept 2011. His is also mild and about 8 inches up. What is amazing to me is that with such mild disease you can be so sick. My son lost 13 lbs in 1 week.

Anyway, his has been doing great on Aspriso and 2x a week he uses canassa. I also have him on lots of vitamins and probiotics. Similiar to what I take. His diet has also gotten much better-no more processed foods and more veggies and fruits. Get your Vit D levels checked and raise them to 50 plus, and yes tumeric 1000mg a day and epa/dha fish oil-good stuff.

Take your meds, you should be fine. My stupid GI took me off all meds when I was in remission and then when it came back he could no longer control it-thus I lost my colon.

I told my son that actually getting this disease was a blessing cause it has forced him to eat healthy and take better care of himself. He says he feels better than he has in years. I wish I knew more about this disease when I was diagonised. This forum is fantastic!

Posted 3/9/2012 7:05 PM (GMT 0)
Hello Concuer, InSoFla and Susan thank you all for the nice warm welcome. I already feel at home here and really look forward to keeping you all up to date on my condition and my trials and so forth. Thanks for the reply on the flex sig Notsosickly girl I will certainly keep that all in mind.

I will agree Conquer UC that this forum has given a wealth more information than my GI has and probobly will. I had asked him for a prescription for VSL#3 and he said "I dont prescribe that kind of thing". He is a grad from Harvard according to his plaque on his wall. I knew from his response that it was senseless to further ask him about supplements although I mentioned th combo of Psyllium seed husk and VSL#3 and that there were some who had good luck with it and he replied " You have to be careful waht you take now that your feeling better as it can change things. I didnt say a word in reply. All in all he did his job and can't expect more than that from him at this point as I guess his hands are tied on the issues with all this. I also had taken one months worth of the saccharomyces bouldarii which I had origionally forgot to mention but will add that to what I have tried so far. I will have to get some more and add it to my Nartren/psyllium seed powder regimen. I also from time to time make rice and add indian curry which is loaded with alot of those good spices. All great suggestions and will continue them all. I have a great appetite lately so I prefer to get my fish oil and tumeric from a food source and so far the fish and the indian curry dont bother me at all. InSoFla right now I pretty much eat everything but avoid red tomatoe sauce like the plague and hot spicy foods which I know would kill me. Dairy in the form of good cheese specifically aged cheddar and organic trader joes milk with their brand of raisin bran all work fine for me. I eat alot less carbs than I used to. At one time would eat more than a half a pound of pasta but do not do that anymore of course. I try to eat as many whole foods as possible and think the paleo diet is beneficial to anyone really in this condition. I eat my share of organic veggies and lean meats which I crave alot. I never eat potatoe chips and instead found good trader joes plantain chips but at the same time I eat alot of rice andpotatoes be it mashed or in olive oil lightly fried for breakfast with eggs ( I eat alot of eggs). I doalso eat good organic plain yogurt with cashews and blueberries which set well with me.

With all diets it is very hard to stay on track all the time which I have found out already. I stopped drinking beer totally. I always had reason to beleive the hops and things especially dark beer would make me feel really gassy so I never drink beer anymore. The last two times I drank beer I got the flu 2 days after and was sick for 10 days which the last one was a couple months prior to this all happening to me.

I have to mention that this is my second day on the psyllium seed powder and have been taking one tblspoon a day and today just my second day on it it made me go to the bathroom like 3 times before 10:30 am. Just yesterday I had my one normal movement in the am. I guess this may be what my GI mentioned to me? I guess maybe I need to lessen the doses of psyllium seed? maybe my body needs to adjust to it? I will give it a week at one tablespoon a day to see how things go.

Susan, I am glad to hear your son is doing well now. It is really amazing how such a small section of the colon can cause so much pain and suffering. It really is frightenting to say the least. I always think of what if I couldnt get my medication for whatever reason which seems my biggest fear and then remember how much nausea and pain I was in. Susan I am sorry to hear that you had to have the surgery but it sounds like you are doing great, so congrats that you can now live your life again.

Have to run but talk to you all soon, your all the best!

------
Male 46 DX'd Mild Lower left UC 4cm section Feb 2 2012
1st month after DX Asacol 800 HD 2 pills 2 times a day.

Currently taking Asacol 800 HD 1 pill 2 times a day.
Natren brand probiotics
Psyllium seed powder ( started 3/8/12)
Prayer
One months worth of saccharomyces bouldarii but will start taking it again soon with the psyllium seed powed and Natren.

No blood in stools now and have normal bowel movement at most 2 times a day. Most of the time once in the am. Asacol seems to work but for how long.

Diet consists of mostly Paleo with some good organic natural cheese Milk and yogurt. Rice and small amounts of pasta also. Alot of potatoes but never chips or french fries.

Thoeries:
I releive beleive the issue is a inbalance of good/bad bacteria for whatever reason in our guts allowing this to happen.
I also beleive this Fecal transplant thing has has alot of validity to it.

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