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Ulcerative Colitis
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Posted 9/27/2010 11:39 PM (GMT 0)
Having a major flare.  Was diagnosed with Crohns in 1996 and then rediagnosed with UC 2 years ago.  This disease has never been really explained to me or how to properly deal with it.  I have been on Prednisone, Asacol, Lialda, xanax, darvocet-n  and something to quiet the spasms in my colon.  I was just released from the hospital with anemia and an inflammed cecum.  My dr. tells me that stress and diet do not cause this condition, but it can make things worse.  Does anyone have a particular diet that follow?  Does anyone have only RIGHT sided pain.  My pain is not in my left side, it is all in the right side, in my lower back and across my lower abdomen.  Does any of this sound familar to anyone.  I am really desparate about now.  The pain, loose stools and anxiety over the whole thing just never seems to go away.  Hubby is trying to understand but having a real hard time with all of this.  Since my condition has worsened I have really become house-bound since I'm afraid to leave the toilet area.  I have had several outside accidents mad .

Tired in Mich

Posted 9/27/2010 11:48 PM (GMT 0)
Im new with UC but I have found that the book "Eat Right for Your Blood Type" has helped a lot so far. I also found a cook book thats dairy, wheat and gluten free. Its easy to use and it also helps. I notice when I start having lots of sweets, coffee treats etc. I have more flare ups. Hope that helps alittle =)
Posted 9/28/2010 12:41 AM (GMT 0)
Your symptoms sound more like Crohn's than UC. What made the dr change the diagnosis? Right sided pain and ileitis are classic Crohn's symptoms.
Posted 9/28/2010 12:52 AM (GMT 0)
My dr. changed my diagnosis from Crohns to UC because of a specialized blood test. Dr. in Calif. and current dr. were having conflicting opinions as to diagnosis. Apparently there is a blood test that can tell the difference. I'm so confused right now and hurting so bad at the same time. Can use any help I can get at this point PLEASE.
Posted 9/28/2010 12:54 AM (GMT 0)
I agree with luv2ride... I have right sided pain also but my inflammation is also in the rectal-sigmoid area which causes quite a bit of bleeding.. on TOP of the right sided pain... I'm sure I have Crohn's but my GI isn't convinced enough to warrant a diagnosis yet...

My last Colonoscopy back in March showed redness at the ileum, but the biopsies came back non-conclusive so no Crohn's diagnosis yet.. I'm not going through another scope unless it get's worse but for now it's just constantly annoying.

I had right sided pain last year for gosh.. like 7 months... he took me off Pentasa and it went away shortly thereafter.. then about 2 months ago it came back and hasn't left me since.. I feel it every day, all the time... Not excruciating, but bad enough to know it's there and I can't wear certain types of jeans because of the pressure it puts on my stomach.

So for now all I take is Canasa and Rowasa enema's and nothing oral at this time... I was thinking of trying Pentasa one more time since it's more of a Crohn's medication and seeing if that helps or not... It's just a very depressing ongoing ordeal for me as well... SIGH...
Posted 9/28/2010 1:48 AM (GMT 0)
I wish I could count the scopes I've had. all but two were non-conclusive. Two the dr. was unable to get all the way thru and I am unable to be put out far enough to warrant the additional pain. My latest problem is that the diarrhea was so severe I resorted to taking an Imodiam---now I am just plain bloated and can't go even tho I feel the urge. SIGH FOR SURE... Whoops I forgot I do take 40 mg. Nexium daily.
Posted 9/28/2010 2:59 AM (GMT 0)
I need to update my signature, I also take Nexium 40mg every day as well... ever since I was on Prednisone last year.. gosh I hate what this disease has done to my life....
Posted 9/28/2010 10:32 AM (GMT 0)
Welcome to HW Tired in Mich, I'm glad you found us but sorry of the circumustances. I take it you are from Michigan? So am I :) I'm sorry you're feeling so poorly. Your scopes did reveal inflammation starting from the rectum though yes? What about any ulceration?

I have left sided Uc so all my pain is located on my left side to my rectum, but every once in a while I get a pain on the right. Not sure but I am thinking it's because I have ovarian cysts. Have you ever had your ovaries checked out? If not, I highly recommend you just ask the doc about the possibility because women with IBD are prone to ovarian cysts. I had a rather large one on my right side several years ago and the pain was unreal. Sharp, pulsing and radiating across my hips and into my back.

And please be careful of the Immodium. If taken long term and in high doses it can cause toxic megacolon in us. That is a very life threatening condition.
Posted 9/28/2010 3:56 PM (GMT 0)
Thanks to all who have responded to me. Yes I do live in Mich. I moved here 5 years ago from So. Ca.
Two of my scopes found ulcers--the dr. in Calif said the initial one found ulcers from my esophegus to my rectum with some by the ilium. That's what prompted the initial diagnosis of Crohns, but he wasn't quite sure. Since then (1996) only one scope has shown anything---and I have had many.... I have had a hysterectomy many years ago so I don't think overian cysts can be a possibility. Forgot to mention that I also have Asthma and GERD. Glad to know about the Immodium altho I only took the one in pure desparation........ Dr. put me on Clonopin a while back to help with the anxiety, but I stopped it because I felt it only made me more nervous .Has anyone had a problem with that drug? I get very nervous about taking new medications since I seem to have allergic reactions to so many of them. This prednisone wreaks havoc with me. I'm now starting to decrease it and he has increased the Lialda to 4 pills a day. Last night at dinner my DH put 13 pills (including vitamins) by my plate. I started to cry. I've never taken so many pills in my whole life and seemingly with no results. I guess time will tell.
Posted 9/28/2010 5:36 PM (GMT 0)
You've only had one answer about diet so I'll add mine: Specific Carbohydrate Diet. I never responded to meds and was resigned to how bad my symptoms were. It is not an easy diet but if you get results it will be worth it. I can tell you I never feel hungry, it's not that type of diet.
Use the search engine on this site to find many threads about it.

You can find most everything you need to know about it on the internet. Short version: eliminate most carbohydrates, most dairy, almost all sugar, all starches and grains. What's left you ask? Protein and most veggies (nonstarch types) especially leafy greens. This is based on the idea that our symptoms are caused by a gut flora imbalanace which is sustained with sugar. Our bodies turn starches and carbohydrates into sugar after eating.

Good luck. It doesn't work for everyone and didn't work for me the first time I tried it. This time it worked and many people with UC and Crohn's have had remission from symptoms on SCD.
Posted 9/29/2010 8:35 AM (GMT 0)
I second imagardener2
I think it is important to keep on regular meds until you have been in remission for years or better if you have only minimal side effects to stay on them forever, but the SCD diet is the thing that is keeping my daughter's pancolitis in under day-to-day control. I believe in SCD because we didn't start out on the strict diet but just found by a food diary that high carb/sugar/fat foods created more wind/cramps/urgency. By dropping refined starchy/sugary/fatty foods she greatly improved, and I found myself searching for recipes to vary her meal choices. Many recipes which seemed to match what she could cope with were from SCD websites. Because we were not following it 'to the letter' if we went out socially sometimes we would bend the rules, and each time there was more speed/wind/cramps which might then lead on to mucus and blood. After one particularly bad episode I bought the book to get the exact information and I am now encouraging her to follow it as strictly as possible. At 17 it is quite hard to give up the normal teenage foods and it needs determination to stick to it when she goes out with her friends - but as she had been so very unwell and in pain - she is happy to stick with it and is currently symptom free. As time has passed she has more energy and confidence and we now track if a food suits her by slight increase in wind - not mucus blood or extreme urgency.
UC affects everyone differently but diet is one thing we do have control over. I know there are various suggested diets and SCD is quite restrictive but in my daughter's case it has made a massive difference.
Sue
Posted 9/30/2010 3:32 PM (GMT 0)
I'm going to the dietician today and will talk to her about the SCD diet. Than you all for you input. I wish I could say that I am feeling better, but that certainly is not the case. I got my blood work back today and it is all messed up. Don't have the faintest idea what is next---all I can say is I am so exhausted and really down in the dumps. I hate this feeling of being trapped in my house and am fearful of eating anything. DH is weary of it all also. He feels so helpless. He told me the other day that his is used to being able to fix anything and this time he can't fix me and it is scaring him to death. Hope I make the swing around soon.
Thanks for your support--You guys are all I really have at this minute.
Posted 9/30/2010 4:41 PM (GMT 0)
My husband feels the same way. He says I worry him. He wants to be able to fix me and feels helpless when he can't. So he just offers extra hugs and a shoulder to cry on when I need it, not to mention he has cooked dinner for us three times this week because I was too tired and weak to do it.

We are here for you whenever you need us. That is what we are about......support. So don't hesitate to ask any questions or concerns you may have.

Btw, where about in MI are you? I'm near the Metro Detroit area.
Posted 9/30/2010 11:44 PM (GMT 0)
Well the dietician didn't offer much more than I was told to do before. That being eating a low residue diet during a flare-up. She did support the idea of eliminating sugar, caffeine (sp), dairy, raw veggies, chocolate and my fav. POPCORN. She really stressed eating a lot of protien and really keeping hydrated Her ideas on the SCD diet were pretty much in line, but mentioned I need only to follow that during a flare. At this time I wondering if I'll ever get this under control. This has been going on since the last of Aug as close as my husband and I can figure. I guess I got all nervous about my son coming from CA for 9 days---we figured last night that's what put me in the hospital--then 3 days after he left my DH's son and his girlfriend came from CA for another 9 days. Could it be that's what is the matter with me????
Blood work did come back today as no anemia-but all the other numbers are all over the place. Will find out what that all means on Tuesday.
Has anyone had any difficulty with Clonopin?
Posted 9/30/2010 11:53 PM (GMT 0)
Oh excuse me, I live in Western Michigan on the lake.
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