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Collagenous Colitis?

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Posted 5/30/2009 12:58 AM (GMT 0)
 

Hello Everyone,

I is nice to meet you all, even under the circumstances. I hope I am posting in the right place. I am Holly and I have just been diagnosed with Colitis. I had been in a really severe flare for 6 weeks with no letup. I am now? in a less flare with only cramping, bloating, nauseau and just the feeling of unwell. Is this a remission?  I am just looking for some insight into this disease and am hoping you can help me. I am curious to the general prognosis of this and what I can do to help myself. Any help will be profoundly welcome. Thank you all.

Blessings, HollyHawk

 

Posted 5/30/2009 1:37 AM (GMT 0)
Collagenous colitis, AKA; microscopic colitis is a form of colitis which only affects the colon, there are some people on the UC board that have collagenous colitis, treatment is pretty much the same with meds used from my understanding.

:)
Posted 5/30/2009 1:50 AM (GMT 0)
Thanks for your reply,pb4,

Am I in the right place as you mentioned the UC board? I am interested in finding out all I can.
Posted 5/30/2009 10:42 AM (GMT 0)
I have Collagenous colitis as well as Crohn's. My GI has told me that there is no cure for it but she treats it with Lialda, Pamine and Opium. I also get Remicade for the Crohn's. When I had the first colonoscopy with her, she wasn't even sure what kind of colitis it was, so she sent the slides to the Cleveland Clinic to have them analyzed. After 30 years of this, the GI has told me that the elasticity in my colon has diseased as opposed to a normal person's colon, hence I can no longer form a normal BM. As long as I can cope with this, I am BOUND and DETERMINED to KEEP my COLON!
Posted 5/30/2009 11:59 AM (GMT 0)
Hello OMIGrandma,

You sound like a "Gutsy" Lady! Good for you. I would not like to lose my colon either and would do ALL that I could before going that route. My colonoscopy looked good but the path report came back with Collagenous Colitis. My treating physician had never heard of that either. He is going to read up on it for my next appointment. What do you call a "flare?" I am over the BRB's ( bathroom BLUES) but still have some severe cramping, bloating and nausea. Any recommendations?  Best wishes to you!

Holly

Posted 5/30/2009 8:01 PM (GMT 0)
Holly, a flare is another word for a severe attack of colitis after you have been controlled for a while. I have not been in remission, or in other words had normal bowel movements, since I was 30 years old and pregnant with my daughter and I am shortly to be 60. When you flare, you get horribly sick with severe cramps, D, nausea, and of course everyone's symptoms are different. Since I both Crohn's and Collagenous Colitis, and yea, I'm SO glad you found me, my GI treats me differently than if I just had Colitis. PLEASE let me know what your GI says at your next appointment. Holly, there really is no way ever that I will give up my colon. I can deal with this even though it means changing my panties 2-3 times a day or sleeping on 6 towels at night or not taking long car rides. I also have Crohn's Arthritis. Friday I had an MRI on my right hip because of such severe pain that I could barely walk. I don't know what exactly is wrong but I am looking on the bright side and at least the Crohn's hasn't attacked my brain or my heart.
Again, I am so glad that you and I can talk about the same kind of Colitis because as both our GIs have said, what we have is extremely rare.

Take care, Darilyn
Posted 5/30/2009 9:51 PM (GMT 0)
Hi Darilyn,

Yes, well the watery diareah for 6 weeks has passed. Thank, God. I am still dealing with spasms, bloating, cramping and nausea thatt comes in waves. This deal is certainly not fun but i am used to dealing with health issues. I also have CTD, Arthritis, osteoporosis, high BP, to name only a few. I am a fighter but this new disease had me down for that 6 weeks. I am back trying to learn all I can and see if anything makes a difference. I too have to change panties 1-3 times a day and worry about any gas! I am 59 years young or old depending on the day. turn   I see my primary on the 10th and will let you know what he tells me. He is not a gaestro doc. I look forward to hearing from you again and meeting others like us. Have a good no or low pain day!

Holly

Posted 6/2/2009 5:21 PM (GMT 0)
Hi Holly, I'm still here. How are you doing? I had another treatment of Remicade yesterday for the Crohn's . I had an MRI on my right hip last Friday. Rhumi thinks it could be a number of things but likely caused by Crohn's Arthritis. I am praying that it is not a slight fracture, one of the options mentioned. He gave me a shot of cortisone that eased the pain slightly for a day or 2. His opinion was that it could be bursitis, another option but not necessarily viable because the pain is so severe. Anyway, I see a pain management specialist doctor who got me on Aqua Therapy which helps with the pains through my body. It took forever for the Insurance Co. to approve it, but finally. I also wear a Fyntalyn Pain Patch that he increased from 25mgs to 50mgs; so we'll see. Are you not in the hands of a good GI? My GI is amazing. The first time I saw her she said that she had a lot of patients who had Crohn's but none as bad as I. At the time, she didn't even know I had Colitis, let alone what kind. I am also 59, like you say on a good day. Let's keep in touch. Have a GOOD DAY.
Posted 6/3/2009 2:33 PM (GMT 0)
Hi Darilyn,

Any results on your MRI back? Wishing you well on that. Aqua therapy is wonderful. I hope you can continue with it. I have two good GI docs. I also live in a rural area and it is a long drive to my doctors. I am seeing my Primary on the 10th and see if he reccomend I see my gaetro. I have just been diagnosed recently. It is all new to me except the D. Ugh.
Posted 6/3/2009 6:21 PM (GMT 0)
Hi Holly, still waiting the MRI news. I have an appointment with him tomorrow. It seems like it is you and I with the Collageneous Colitis and Crohn's. No one else appears to have joined in but that's ok. May I recommend that you go on Amazon and for $6.00 buy yourself the book, Kitchen Table Wisdom, by Rachel Naomi Remen, MD. It was recommended to me by many people on this site and it was more than worth the 6 bucks I paid for it. The author is a doctor who has suffered from Crohn's for over 30 years and has had the same experiences as you and I have had. It is in paper and it is the type of book that you will read over and over. The chapters are small and they are all her experiences as a doctor and as a D. sufferer and it is the perfect book for us. I also am the step mom of a recovering alcoholic daughter so I read a book every night, which obviously should be read every morning, called New Beginnings. It is the AA philosophy about taking one day at a time and it has a quote for the day, all written by women, and then a small passage explaining the quote all written by an author from the AA program. I try very hard to stick to their theory of one day at a time. But when I am in the toilet 25 times a day, it usually for me becomes, an hour by hour thing. I hope that you will buy Kitchen Table Wisdom. I really don't think you will be disappointed. Please take care of yourself and let's stay in touch.
One more thing, are you able to any Yoga? or any deep breathing? It is so important to try to stay somewhat relaxed if possible.
Be well, Darilyn
Posted 6/6/2009 8:26 PM (GMT 0)
Holly I read Pepto Bismol works good for that type of colitis.
Posted 6/7/2009 4:36 AM (GMT 0)
Have you two tried probiotics? They can help with the inflammation and D. I just read about Culturelle in another post and would recommend that (should be in many pharmacies).
Posted 6/7/2009 11:38 AM (GMT 0)
Yep, have done both, Probiotics,which I take every day and Pepto Bismol which did nothing. But thanks for the help.
Posted 6/10/2009 11:25 AM (GMT 0)
Hi Holly, good luck with your doctor today. I saw my GI yesterday. She was pretty much pleased and we shall stay the course for the time being and keep up the Remicade every 4 weeks for the time being. Eventually she said she will need to stretch me out to every 6 weeks with the Remicade but not right now. No Remicade and Imuran because she said that it may cause Lymphoma which I definitely don't need. Let me know what your doctor says, I really hope that you are doing better.

Darilyn
Posted 6/17/2009 7:51 PM (GMT 0)
Hi Holly, every day I check to see if you have come back. I hope that you are ok. I miss talking to you. Please let me know that you are ok and are feeling much better than before. It would appear that you and I are the only 2 people suffering with collagenous colitis among other diseases so please let me know that you are safe and healthy. I really miss our conversations.

One worried sufferer, Darilyn
Posted 6/17/2009 8:24 PM (GMT 0)
Darilyn,

Hi its me Gail *Nanners* (recommended board to you). So glad you are able to connect with others on the board. Just wanted to say HI to you.

Hugs
Gail *Nanners*
Posted 6/19/2009 1:43 PM (GMT 0)
 Hi To Everyone!

 I'm sorry I've been missing in action. We have been busy around here with family and relatives plus I have been flaring a bit again. I suppose too much going on for me and no time to relax and just chill. I hope all of you are hanging in there. It is good to be back among friends who understand.

Thanks Zippy for the heads up on the Pepto. I am trying everything. How are you?

Darilyn, I will try to find the book you suggested. Thanks for mentioning it. One thing.... what is the difference between colitis and Chrons? Thanks for thinking of me. I just had a CT of my abdomen and pelvis on Thursday and am waiting on the results. What about your MRI?

Hi Keeper, I do take probiotics and have for several years. I have been taking Flora Smart lately. Anyone know how Align works? I just bought some as it is supposed to perhaps work better than the others. We'll see. Is Culterelle another new one out there?

Hi Nanners, Nice to meet you, too. I guess you have been dealing with this for a long time. It is nice to meet others on this same journey although I hope you are doing well.

I hope all of you are having a no or low pain day today. turn   

Best Regards, Holly

Posted 6/19/2009 5:30 PM (GMT 0)
Hi Holly, I'm so glad you're back. I've been really worried about you. Hi Nanners, Gail. I figured out who you were a while ago. I have such bad news and am so depressed. The Remicade stopped working, the only medicine that gave me any help in 30 years. I am devastated. I was doing great and them boom, literally and figuratively, after about 6 months, it stopped its efficacy. My GI said that that can happen because there is no promise given for how long Remicade, or for that matter any drug will last. Now the next step is Cizma and 6MP but I need to wait 3 more weeks for the Remicade to totally leave my body. That means 20-25 trips a day to the potty and nights that I am ashamed to even admit. In 8 days I have lost 4 pounds and my hands and finger are already splitting and the Crohn's Arthritis is acting up. I have leg cramps and I know that I need to keep hydrated and I am drinking lots of Gatorade 2 and Smart Water. The most horrible thought is I still have 3 weeks to go before I can start the new treatment. I am venting and I apologize. I am so depressed and I am literally sitting here in tears. No one who doesn't suffer from our diseases can understand that 3 weeks isn't 21 days days, it is going to be unbearable. I only hope that I don't wind up in the hospital on an IV or something worse. Thank the Lord for a truly amazing husband. When I read some of the blogs from people without friends or family near by, I cry for them because I don't know what I would do. Thank you all for listening to my pain and understanding the hell we all go through. I did ask my GI what do to do for 3 weeks and she said there was nothing to do we hadn't already tried.
Darilyn
Posted 6/19/2009 8:51 PM (GMT 0)
Holly, both Align and Culturelle are single probiotic bacteria (not a blend of several bacteria). Both have extensive testing and scientific literature investigations of their effectiveness for intestinal problems. Align is Bifidobacter infantis and is one of the first bacteria that colonize the gut after birth. Culturelle is made by ConAgra and would be my choice based on the literature I've seen. The problem with many of the probiotics on the market is that the species of bacteria in them are not well defined so that you can't tell what effect taking them might have. Also, there are some reports of bad results from taking some Bifidobacter species (Breaking the Vicious Cycle), so most of the common probiotic brand mixtures might cause problems. Any problems would depend on the individual since there are so many different sensitivities among Crohnnies. Some might tolerate it while others might react badly to it. Bifidobacter is in so many probiotic blends that it is hard to find one that does not have it. Also, the different probiotic bacteria do different things to your gut immunity and some adhere to the gut wall (forming a protective barrier) and some don't. Also, bacteria that do adhere, do so at different locations in the gut, so there are many variables.
Posted 6/20/2009 12:42 PM (GMT 0)
Hello everyone,

I hope you are having a good morning.

Darilyn, I'm so sorry to hear your news but hang in there and know we will all support you and pray for you through these next tough 3 weeks. If it helps any, I am right there with you. I am FLARING myself but don't have your bad news. Don't ever feel ashamed, you have no control over it. I am glad that you have a loving husband as I do. It still doesn't ease the trips to the BR. No matter what stay hydrated and even Eat well. You know the diet that works. You must have nutrients still going in or you'll take the chance of getting really sick. That is what my gaestro told me. It may seem futile but you need to do this. OMO Dry up your tears and tell yourself you'll get through this. Don't let the stress of this win.

Gentle Hugs, Holly
Posted 6/20/2009 12:47 PM (GMT 0)
Hi Keeper,

Thanks for the good info. Do you think I should try the Align then? Next time I'll buy Culterelle. What one works for you? I had been taking Flora Smart.

Can you tell me the difference between colitis and Chron's?

How are you doing and where are you on this journey? I do know that it helps to share with others.

Best Regards, Holly

 

Posted 6/20/2009 1:42 PM (GMT 0)
Omigrandma if you need to go to the hospital during this time, do it. Did your doctor say anything about either Pred or Entocort in the meantime. I can't remember if you could take them or not, but I think they would help a little until you could try the new med. I will definetly keep you in my prayers, I am so sorry you are suffering so. No one should have to feel that bad.

Big Hugs
Gail *Nanners*
Posted 6/22/2009 6:47 AM (GMT 0)
Darilyn,

Just wondered how you are doing?

Holly
Posted 6/24/2009 1:38 AM (GMT 0)
How's everyone tonight?
Posted 6/25/2009 2:18 AM (GMT 0)
Keeper,

You seem to know alot about probiotics. Was wondering if you maybe had a suggestion for someone with C Diff and Crohn's colitis. I'm taking Floranex, found at pharmacies, which contains lactobacillius acidophilus and lactobacillius bulgaricus. And am also taking Digestive Advantage for crohns & colitis, which I think the main ingredient is S. Boullardi. My dr. didnt say anything about probiotics so I'm kinda winging it here.

Thanks.
Stef
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