20 answers

Is There Anyone Out There with Ulcerative Colitis? I Have Many Questions.

I am 28 and was diagnosed with IBD or more specific and not to be confused with IBS, Ulcerative Colitis, 5 years ago. I had never heard of it just like most people I know. After many trial and errors I have now been doing "pretty" well for the last 3 months. But I just want to know if there are people out there that would mind if I could pick there brain? Everytime I look online for answers to my symptoms I come to a dead end. I have a great doctor and am happy that way but I also don't think he can help me as much as someone who's been through this. So if you're out there and can help answer my questions, please let me know. Thanks!

I'm just looking for someone out there to share their knowledge, meaning real first hand experiences. Thanks again. I appreciate everyone who takes the time to help others on this web site, you all are wonderful.

What can I do next?

Featured Answers

I had a very severe case of Ulcerative colitis. I would be happy to answer any questions you might have and share the things that seemed to work better than others. You may email me at ____@____.com.
B.

Docs don't know what I have. I have been told IBS,Ulcerative Colitis, celiac. So I have had lots of experience in this area.
I have had 3 endo/colonoscopies, tried several diets and meds. I have finally found a diet and meds that work for me. Although its not perfect it livable.

I would love to listen and help out.

A.

A little about me:
I am a mother of one little 3 yr. old boy and wife to a wonderful guy. I have many health issues since my pregnancy. I am very into cooking and trying new things.

More Answers

My husband had Ulcertive Colitis. I was not married to him at the time, but would be happy to relay information if you have specifici questions he might be able to answer for you.
He has his colon removed in 2000, during emergency surgery because he didn't know he had it and it was never taken care of. We now live with the reprocutions of not taking catching it early on. He was a single father of 4 and chose to ignore the signs for two months while he worked full time... and it almost killed him. But, the reprocutions are not that bad at all.. they're easy to live with, for me at least.
Feel free to get in touch with me if this might help you. We're always up to helping answer questions of offer advice to anyone who might be able to use it.

I had a very severe case of Ulcerative colitis. I would be happy to answer any questions you might have and share the things that seemed to work better than others. You may email me at ____@____.com.
B.

I have a couple of friends with Crohn's disease, both of whom have been living with it for more than 15 years. It is a close cousin to Ulcerative Colitis. I am a naturopath, and I have to agree that I've seen both in the clinic and with my two friends wondrous things come from natural medicine, both Chinese and Western. The regular medical world has a lot to offer once the disease has progressed in terms of surgery and medications, but does not have a lot to offer in terms of stopping the progression of the disease.

The friend that was able to use natural medicine and adhere to a specific diet is doing well, symptom-free for 10 years now. The one who does not adhere so well to the diet and natural medicines is still fighting the battle. The first one went on to study natural medicine because he was so moved by his own experience.

Best of luck in your thought process,
Dr. E. Mendenhall, ND

My dad had ulcerative colitis for years when I was growing up 't and he found out that he was alergic to antihistamines. No doctor ever was able to tell him that it might be because he was taking something he was allergic to. As soon as he stopped taking them the colitis calmed way down.

My encouragement to you would be to just try things. Even if the doctor doesn't recommend it. If you have a feeling that something might help, try it. A naturalpath might be able to help you too. Auto-immune diseases like colitis and arthritis can be greatly helped by natualpathic medicine.

That's my two cents. J.K.

Hello pretty lady:
my name is I.. I wish i could help you answering your questions or be close to where you are to show you my support. Unfortunately i am in acapulco, mexico, but from this side of the world i want to tell you that i love you and i am going to pray the lord to help you with what you are going through. If you like to pray at night before you go to bed. Just tell god what you want, he is merciful and kind with the broken hearts. I wish i could know your name so i can mention it to the lord in my prayers. Cheer up!!!! God loves you, your kids love you, your husband loves you and me too. I send you a little bit of sunshine from acapulco, mexico. Your new friend. I.

My dad had Ulcerative Colitis when I was in Junior High. I have a cousin who was diagnosed and opted to have surgery last December. I was starting to show symptoms, but was able to stop them 3 years ago...although while pregnant with my second, the symptoms returned, but vanished within days of giving birth.

My dad ended up having surgery and has an ostomy bag, but as I understand it options today are different than they were for him. My cousin chose to be reconnected, so to speak, and has been doing fine adjusting.

My doctor told me to cut out caffeine, black tea, and ibuprofen. Aside from the relapse when I was pregnant, I have not had any symptoms since 2003.

I know there is good info out there, I'll ask my dad and cousin where the best is.

Hi. I think my husband is the most amazing person in the world. He is a full time Barber, on his feet all day, and is 75 yoa.
A few years ago he was diagnosed with UC. He has had Remacade Infusions about 3 times in 10 years. It is magic! The man is healed. The Remacade (Not sure of spelling, this is how it sounds though) was invented for R.A. which is caused by the body turning on itself. Somewhere along the line it was found to cure UC abd Crones in many people. They don't promise, but if it works, it is well worth trying.
I wish you the very best. This is such a horrible problem. You can never go in public unless you know where a nearby restroom is. I think it is talked about too little because it is embarrassing.
Just for the record, my husband was in serious trouble and hemorraged before they decided to do this for him.
A well wisher from Oregon

I have a friend who has battled this and has found what works for her. I can only imagine how awful this condition can be.
Would love to help,
V.
here's my email:
____@____.com

Hi MH
I don't have Ulcerative Colitis myself, however my cousin's wife does, or did. She's been pretty ill for some years. Last winter she could hardly get out of the house, but she went to a natural type clinic in Mexico and this year she has been skiing and doing well. The clinic is called Missionmedicalcenter.com
and I'm sure Shelly would be glad to answer your questions. ____@____.com
Patty W

Hi M.H.,
I agree with Helen--explore the natural route first. Although I don't have Ulcerative Colitis, I have had a lot of issues with my digestive system and I was greatly helped by a naturopathic doctor after having had tests run by regular doctors and feeling like I was running up against dead ends. Regular doctors in general know little or nothing about nutrition. They just like to run a lot of tests, diagnose, and possibly prescribe medication. And medication often "masks" the condition and causes side effects as well. Good luck in your search. The information is out there, just maybe from alternative sources.

My husband was actually diagnosed with Colitis just this last fall after suffering from symptoms for three years (he's notorious for waiting until he's practically dying before going to a doctor!). We went with a Naturopathic Doctor and after three months he was able to get his Colitis into remission. The first thing our doctor did was to run a GI (Gastric Intestinal) Panel. From this he was able to see how bad the Colitis was and even detect certain food allergies (my husband ended up being sensitive to dairy). We also discovered that the cause of his Colitis was from having very little good bacteria in his intestines (which we think was the cause of taking antibiotics). After being put on a special diet and supplement program and taking infusions of new good bacteria, he started feeling better after about a month. Though the disease is incurable, next time he has a flareup we'll know how to handle it.

I couldn't say enough about finding a good Naturopath! I was diagnosed with Rheumatoid Arthritis at 28 (also an autoimmune disease), just after my 2 yr old was born. At the time I'd have flareups that would make it impossible to get out of bed, let alone take care of a newborn! Because I wanted to breastfeed we wanted to try handling it a more natural way. We went with a Naturopath then, and today, though I'm not perfect, I'm doing sooo much better and am continuing to improve. Try giving natural medicine a chance if you're not getting the results you would like right now.

Have you talked to your doc about a surgical cure?

I can't help you with personal experience, but I know that if the ulcerative lesion is isolated, sometimes it can be cut out.

unfortunately, it's probably a two-step process with a certain amount of time spent with a colostomy, but if your doctor hasn't brought it up, you could.

Good luck dear,
D. T

Hi! If you go to areyoubalance.net and enter "ulcerative colitis" into the "search for your aliment", you will see quite a number of testimonies from people who used to suffer from this and have been helped by a aloe vera sea vegetable liquid supplement. I work for this wellness company coaching people on achieving their health goals. I used to suffer from chronic fatigue and migranes, but no more! I would love to work with you and try to get your questions answered. Our philosphy is "When you give your body what it needs and remove the hindrances, it then has the ability to heal itself." Please let me know if you'd like more information.

I am a SAHM with a 3 1/2 son and 6 year old daughter and a wonderful husband of over 12 years.

I am 36 years now. I was diagnosed with chronic ulcerative colitis at 25years old. I will try to help with anything I can.

Shoot with the questions!!!

Lauri

MH, I was diagnosed w/UC when I was 12 yrs. old. I'm now 43. The worst part for me, I think, is that, as you mentioned, most people have either never heard of UC, or just don't get what it is. I must admit I'm tired of people confusing IBD with IBS. Fortunately my mom was a huge amount of support and help up until the day she died. My advise is to find someone who you can feel comfortable talking to. I've actually handed to people close to me literature on IBD. I think it helps to educate others around us, so that there isn't such a feeling of isolation and embarassment.

Also, just quickly. Ask your doc about Enticort! During flares, it's just as effective as prednisone, but doesn't have the side effects. It's sure saved me. Good luck, hon!

Hi M H,
I don't have IBD/IBS myself but I have seen it on observation shift at our school clinic at NCNM, the National College of Natural Medicine here in Portland. I am a long way from being a doctor, but what I do see is that patients come in with this condition and have not been told really really basic things by their primary care physicain, like avoiding wheat and dairy, cos MD's are not trained like this. Plus they cannot give the option of herbs to treat the condition like the Chinese doctors can do, again they are not trained in this way.
I would recommend seeing a Chinese Med Practictioner/Acupuncturist or Naturopathic Doctor. you can get inexpensive treatments by going to the school clinic (you may have to wait, you may have students watching, but you get great care at v low cost._) see www.ncnm.edu

this is something you will likely have to manage your whole life so get the best advice you can early on. please investigate the healty route vs the drug route first. generally when you start on drugs to mask a problem, you end up taking more and more as the symptoms worsen as you haven't treated what caused the symptoms in the first place.
best wishes
from another mama

Have you tried a gluten free diet? Omit all barley, rye, oats and wheat. Have you tried a dairy free diet? I have a customer, who also has UC, who ordered Juice Plus from me and has regained his strength and health! K.

Hi. My father has or had ulcerative colotis for years. He had his colin completely removed about 9 1/2 years ago and they reconstructed him a new one. He said for you to email him and he would gladly talk to you about whatever questions you have. He only asks that you put in the subject line "ulcerative colitis" so that when he gets your email, he won't delete it because i guess if he does not know who is sending it, he will delete it. He said that he would start looking for one from you. He is looking forward to talking to you. His name is jim. His email address is: ____@____.com. I hope that this helps. Good luck. My dad is a great guy and will help lots.

Docs don't know what I have. I have been told IBS,Ulcerative Colitis, celiac. So I have had lots of experience in this area.
I have had 3 endo/colonoscopies, tried several diets and meds. I have finally found a diet and meds that work for me. Although its not perfect it livable.

I would love to listen and help out.

A.

A little about me:
I am a mother of one little 3 yr. old boy and wife to a wonderful guy. I have many health issues since my pregnancy. I am very into cooking and trying new things.

I have Ulcerative Colitis. I was diagnosed 8 years ago. I would love to help answer any questions that I can. Based on my own experiances.

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