[Doody]

I feel lost in these forums when it comes to one of my physical problems which is Ulcerative Colitis. Am I in the right place? Does anyone here have Ulcerative Colitis.

TIA

[dahlek]

but use the search feature in the middle of the top blue bar and you will probably find some others who have the same problem who are all over the boards. Some of them my help you.
Another way to try and find folks is to web up : Ulcerative Colitis support
I found what appear to be several legitimate sites that may be useful.
I sure wish I could be more useful!
Hold on to your good thoughts and keep at it all...you will find help if you are doggedly persistent enuf. Let others know if there are any good resources out there - we don't share, we can't learn and share more. But, you know that - j

[watsonsh]

Hi Doody,

I dont have ulcerative colitis but tests so I have had int he past imflammatory bowel disease which is autoimmune and a sister to ulcerative colitis. I have read a couple books on it.

[Chemar]

Doody

so sorry this painful one has flared again for you

my son has Crohn's and so in the same family of bowel disorders.

he started out on the meds (tried asocol and others) but once again, likely cos of his Tourette Syndrome meaning steroids are contraindicated, we just found not enough benefit and too many side effects.

He has been on Boswellia + Curcumin, Slippery Elm, White Willow Bark and so importantly DGL Liquorice root (MUST be the DGL form of chewable wafers- we use the one by NOW, and the Vitamin Shoppe brand is also good

The boswellia + curcumin mix (another NOW product) or also the curcumin + Bioperene blends are excellent anti-inflammatories, while the slippery elm gives a protective mucinous coating and the white willow bark is again anti-inflammatory plus natural pain relief.
The DGL liquorice root is getting a lot of attention for its remarkabel HEALING properties for all forms of intestinal and gastric ulceration

also, as I am sure you have learned the hard way, certain foods (or lack of them) can cause flareups.

My son has started having a high flax mixed grain and pumpkin seed granola cereal (made by Nature's Path) each morning and drinks a bottle of Ensure (or Boost) with it & his supplements as above and has found a really big reduction in those painful flare ups plus much better overall digestions.

((((((Doody))))))
hope that gives some more tips on keeping this under control for you

[Doody]

Thank you very much you guys.

Yes I did a search of the forums but didn't turn much up. I do know there are other places out there on the internet but wanted to try here.

I'm a veteran at this crap. I'm 58 and have lived with it since I was 27 which was my first attack. Being me, I let it go and let it go wondering what was wrong. Got to the point I couldn't eat or even hold down water. Just had a tremendous amount of pain and lots of bleeding, diarrhea and vomiting all at the same time.

I called an elderly couple, frineds of mine, to come help me. they ran a health food store. Believe me, I've tried all that stuff.

My daughter's dad had left us, I was in California with him and my baby and he left us. Anyway, when the couple came to see me, they took one look and said we are taking you to the hopsital. He had to carry me.

I had gone from 135 lbs, rapidly down to 116. Leveled out for a week and when I got really bad, tumbled down to 86 lbs. Anyway, they got me to the hospital and those people freaked and hooked me up to IV's and tubes everywhere. The doctor called my 0parents in Iowa and asked if they could come out...they didn't think I'd make it to the morning. My pulse was 172 when they checked me in. You could see my heart thumping against my chest.

I looked like a starved person...ribs sticking out all over.

Was in the hospital for one month solid on IV steroids and sulfasalizine. They wouldn't let me out until I got up to 106 lbs and promised to fly home where I could be taken care of.

That was the worst one. Been in the hospital a few times since then with IV steroids but not as bad as the 1st.

I've been in remission for quite some time. But now it's active again and scares me. I see my gastro on Monday and they are moving my annual colonoscopy to an earlier date. (Was supposed to have it in December but they want one as soon as possible.

It's better today with the high dose of Asacol. No bleeding for 2 days so that's good.

Thank you Chemar. I will be trying all of that healthy stuff as soon as I get this under control. Eating most anything right now worries me, lol.

And yesterday after my folks brought me home from the hospital pain clinic, they headed home and decided to go out for errands. My mom locked the back door, had a dog in her hands and a garbage bag, and she missed the first step.



She fell hard and ended up in the hopsita emergency room. Crushed her left heel and broke her fibula and of course sprained it. She's 81 years old. Oi vey.

[Chemar]

oh Doody you and your dear mama are sure in my prayers.

Have you ever read Jordan Rubin's book called "The Maker's Diet"
He had Crohn's and reading your story there made me think of much of his own history.

My son has also lost so much weight and I truly despaired at one point on ways to help him with the excruciating pain and general malaise of this disease, but really do feel encouraged at how he is responding to this nutritional approach

altho we dont follow Dr Rubin's diet fully anymore, I do use the book for the yummy and easy recipes and general guidelines. I got mine at Borders

hoping this flare up comes under control soon Doody and also that your mother recovers well from the fall

btw my son says that when he has had intense pain, the rapid relief from quickly drinking down an Ensure (or Boost) is remarkable. Plus the nutritional stuff in them is well absorbed, being liquid, and so good for IBDs, where malabsorption of nutrients is frequently a problem (no dairy so good too for those who react to dairy stuff)

[Doody]

(((Chemar))) Thank you so much. I will go to Borders and get a copy for myself.

I really use to be a health freak in my youth. I'm beginning to think if I hadn't I wouldn't even be here now!

I will try those things and thank you again so much!

I'm sorry your son goes through this. My cousin died from Crohn's about 20 years ago, right around the time my sister died. But she had been avoiding getting help.

It was at the holidays and she was a cook/hostess extrordinaire. The doctors urged her to admit to the hospital because her crohns was in a horrible place. She said no, not until after the holidays.

By the time they checked her in she had rampant infection that they couldn't get under control and she died.

I also have a friend in California who has it and has done pretty well. Crohns is SO nasty.

When both Crohns and UC are at their absolute worst, they affect your entire digestive system. My prayers for you and your son.

[Dmom3005]

Doody

I was just coming in to see if there was anything on this here.

I didn't realize till reading some more that this was a autoimmune disease.

My son was diagnosed with this during a hospital stay in late October
and then I was diagnosed last week after a bunch of test.

But I am just looking for information and others to learn more from.

I'm on asacol 3 times a day 400mg.

And I'm pretty sure that my husband had better be getting himself checked
out. I'm almost positive I could diagnose this for him.

And then I am going to push my middle son to get to the doctor for this
too. He has things that make me wonder if this is part of his problem.

I'm learning more than I ever thought I would about one disease.

Donna

[ColoradoChick]

All Chrohn's, UC, or any other autoimmune issue needs to be tested for sensitivity to gluten. Even if it comes back negative, I recommend a trial of gluten free, dairy free, soy free and corn free.

My son had diarrhea for 3 months, they tried to tell us it was IBS. I said keep testing and sure enough his TTG transglutamase came back positive which points to celiac.

After being gluten and soy free for 3 weeks that cleared up. I continue to battle other issues, dairy and corn related, so now those are gone. Reflux being a big one, but slowly he is getting back to normal.

GL

[lefthanded]

Originally Posted by Doody

I feel lost in these forums when it comes to one of my physical problems which is Ulcerative Colitis. Am I in the right place? Does anyone here have Ulcerative Colitis.

TIA

I have (had) ulcerative colitis (it was a rapid onset rapid developing illness according to the second pathologist who examined my colon after it was removed.) I had my colectomy on Mother's Day '02 and had a j-pouch constructed and the stoma taken down April '03 . . . four surgeries in less than one year!

Then in 2006, right before my daughter's wedding I developed my first Crohn's fistula, and have been on Cipro ever since. Crohn's brings a whole host of fun symptoms and manifestations and fissures is one of them. Pain that takes my breath away. . . I literally have to tell myself to breathe! I am on pain meds, and my gastro actually prescribed medical cannabis for me. (He is progressive and open to my input. . . necessary attributes of a good gastro.) I also suffer nocturnal incontinence on occasion. I usually sleep in 3 hour increments so I don't soil.



I would also be willing to field questions, but remember, your best resource is a good gastroenterologist. If yours seems unsupportive, or lacks incentive to be aggressive in trying new things, find another. I fired an entire group, one by one, locally, before I found a good one.

This is a disease that you want to be informed about, but be mindful of the fact it is different for every patient. Right now I would say yogurt, cut out sugar as much as possible (I am a sugar addict! I know it is hard) and stay hydrated. If your pain and cramping are so bad you cannot eat, see a doctor and follow through for some relief.