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John in San Diego

Hello, I am a 48 year old male. I was diagnosed over 3 years ago with Chronic Ulcerative Colitis. I went online, studied about it and drove it into remission. I did this by diet, exersize, fluids, reducing stress, etc. It was in remission for about a year and about 6 months ago, just after the stress of my vehicle being stolen, it flared on me worse than ever, totally relentless. This time I turned anemic, I've lost weight from 130 lbs to 108 when I entered the hospital the first time to now I'm down to under 100 lbs. In addition to it this time I now also have Proctitis with the Colitis and I get this thing the doctor calls "Rectal Spasms". I call it dry heaves from the other end. It's where my body sort of takes control and tries to force out anything there may be in there even if there is nothing to force out at all. The pain is horrible. So I mentioned the hospital, I've been hospitalized twice in the past 3 months over this, the second time was for a 3 week period. I'm on Asacol 1600 mg per dose 3 times a day, Prednisone 40 mg once a day, Proctofoam 3 to 4 times a day and when I can get it in me, I'm supposed to do this suppository called Canasa 1000 mg before bed. But usually I am so inflamed I don't want to touch myself there much less be shouving something up there.

I'm also taking 4 mg of Dilaudid once a day, down from every 4 to 6 hours. And I take Tramadal to fill in during the day, those are for pain. I've been out of the hospital for about a month and a half now. At first I was feeling pretty good, now it's like half of my week is good, the other half is bad. I don't leave the house unless it's to go to the doctor or a desperate need for something important. I do wear briefs when I go out. Because I never know what is going to happen. And even sometimes that is not enough. I always need to know where the bathroom is. One day I had to walk from the pharmacy to the bank atm and while standing at the atm one of my episodes came up. This time explosive diarrhea, one small shop refused me to use their bathroom, stopped at jack in the box someone was using that one and someone was waiting, finally located one, but by then I needed a bath. I had to do a sink bath in that restroom. I've learned the items to carry in my diaper bag now. Wipes, briefs, wash cloth, extra clothing. In the past 3 to 4 months I've had probably 20 episodes of losing control of my bowels while out trying to do things. Unfortunately with my vehicle being stolen, now I have to take public transit everywhere. In San Diego if you need a laxative, take a bus somewhere.

The bus is sure to shake things up enough to get it out. They slam on the brakes, gun the engine, repeatedly over and over, by the time you get to your destination you better be looking for a restroom. This thing has become so exhausting and depressing. I'm now to the point of having lost so much weight I feel like I'm wasting away and now have to be careful of pressure sores when I sleep at night. Some days I just wish it would all end but I push forward. I don't have a support system here. So if anyone reading this happens to be in the San Diego area and would like to compare notes, be friends, just talk, please feel free to contact me. I'm currently not talking to my Mother who was really the only support system I had, she stresses me out too much, she does not understand that arguing and pressure and bullying does not help the condition. Anyway, hope this helps someone or finds someone or something. Thanks for reading.
 
John, hello and a big warm welcome to the forum. I'm so sorry that you are having such a horrible time :-( I was wondering if you had heard of the CCFA? We have a sister organisation and as well as sending out regular newsletters, if you become a member, they issue you with a 'Cant Wait' card that can help you get access to shop toilets and a radar key for disabled toilets. They also have details for support groups all around the country. It would be worth checking out their website.
Things are usually quiet forum wise at the weekend, but I'm sure you'll hear from other UC sufferers shortly.
 

David

Co-Founder
Location
Naples, Florida
Hi John and welcome!

Man, I'm so sorry to hear about what you're going through, that's terrible :(

Have you tried making any dietary changes? There's some people here with UC who have had fantastic results with the Specific Carbohydrate Diet for example.

If you're on that high of a dose of Prednisone and still having that much trouble, have they brought up the idea of a biologic like Remicade?

I hope things improve for you soon!
 
John, hello and a big warm welcome to the forum. I'm so sorry that you are having such a horrible time :-( I was wondering if you had heard of the CCFA? We have a sister organisation and as well as sending out regular newsletters, if you become a member, they issue you with a 'Cant Wait' card that can help you get access to shop toilets and a radar key for disabled toilets. They also have details for support groups all around the country. It would be worth checking out their website.
Things are usually quiet forum wise at the weekend, but I'm sure you'll hear from other UC sufferers shortly.
I have not heard of CCFA, but will google it today and see what I find. Thank you for the information.
 
Hi John and welcome!

Man, I'm so sorry to hear about what you're going through, that's terrible :(

Have you tried making any dietary changes? There's some people here with UC who have had fantastic results with the Specific Carbohydrate Diet for example.

If you're on that high of a dose of Prednisone and still having that much trouble, have they brought up the idea of a biologic like Remicade?

I hope things improve for you soon!
Thank you David for the info. Nothing has been said about any medicine changes as of yet. In fact my doctor didn't want to see me for a month follow up. I'm calling tomorrow and asking for a sooner follow up. I have a load of questions now after all of the reading and chatting in the past 24 hours. But I will ask about a biologic. I will also read up on the Carbohydrate Diet. Thanks again!
 
I had a conversation with a friend from Phoenix last night who had a relative dealing with this same condition for years. She was able to give me some strong diet tips. One thing I've been doing because of my huge weight loss is eating high protein and meats. I did not know that meat was a big no no since my digestive can't process it. Also even though I was told by the doctor to eat fiber, I didn't know that skins are another no no, to peel the apple first. I've been eating Raisin Bran cereal every morning and pretty much that is all I had yesterday several times. Today my energy level is up and I'm feeling much better. I don't feel sluggish today. So I am seeing improvement today. Thank you again for your comments and help.
 
I'm so glad you could reach someone who has some second hand experience..and that you're here on the forum and getting support! I think you'll find dietary tips at good..but you will also learn what will work for you and won't definitely won't work! I try and keep things to as lowest a residue diet as I can when my crohns is flaring..that means mostly soft liquids like soup and apple sauce,mushed bananas..that sorta thing. I have also come to believe a high protein diet is extremely healing..our bodies need that protein to heal up! You may find this in ensure or boost..which I unfortunately cannot do..so I do my own mix of soy milk, whey protein powder, and Greek yogurt..but this is just me! For some, this mix would be painful and increase symptoms. I just have learned thru trial and error for myself..
Raisin bran is amazingly full of fiber..a bowl of that would be like drano to me!lol! But if it works for you;dig in! I have to look on packages at fiber content and if it's high I steer way clear!
I hope you take it easy and just be gentle with yourself! This illness is really hard that's for sure! And you are in a low point..please be insistent with the staff at your doctors..and if you need attention right away, go to the er!
 
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