Crohn's Disease & Ulcerative Colitis Support Group

Hi,
My name is Kate, i'm 19 and I have UC
what sort of rashes do you get? Sometimes i get these little red bumps on my legs and arms, they are painful to the touch, I've been told that, those are rare though. Yes I feel nausous when i first wake up, i always attributed it to the medications i am on. I find it difficult to eat a large meal because i always feel sick and bloated afterwards.

As for the nicotine patches I've read that using the patches doesnt have the same effect as smoking, but i wouldn't start that habit. As for diets it is kind of hit or miss. everyone is different. lots of people say dairy products bother them, while others are okay with it. Also a lot of people stay away from raw veggies and caffiene, but you kind of have to see what bothers you and what doesnt. I try to eat bland food when im am in a flare (which has been for the past year)

Everyone hates being on Prednisone, it sucks, you gain weight cause you are always hungry, your face gets all puffy, you get acne, and you are moody all the time, it can also cause high blood pressure and if you are on high doses for long periods of time it can mess with your blood sugar levels. But despite all that it is really the best out there to try to get you into remission.

Ive been on asacol for 5 years, I am also on 6MP and Humira. I don't really notice many side effects from those drugs.

I'm not sure about the sex part, but just because you have UC doesnt mean you will need to have surgery, Doctors generally want to exhaust all other options first. I have been in a flare for a year and i can't seem to get into remission, im fed up but the doctor isnt ready to move to surgery yet.

And about that guy, it is difficult to tell people about this disease. It can be very embarrasing, I think the best way is to ease people into it, like i just tell people that i have a stomach condition that cause me a lot of pain, and i need to use the bathroom frequently, then as time goes on I can open up about it a little more.

Just a warning, this disease can make any relationship (romantic or otherwise) very stressful, so it is important that those you are closest to are supportive and understanding.

Let me know if there is anything else maybe I can help you with

*hugs*

Sorry, no idea on what all they'd have to remove with surgery. That would be a good thing to ask your doctor.

Certain diets? There are tons... SCD is quite possibly the most strict, but I hear more and more talking about how well it worked for them... so it may be worth looking into. Other diets are usually some form of, "stop eating what makes you ill..." Which is different for everyone. Almost all suggest eating small meals throughout the day. UC/CD scare tissue can build up and cause "strictures" basically your poop gets stuck... the smaller meals helps prevent this.

(SCD: aka Specific Carbohydrate Diet)

As for sex, I'm female and straight (I think... you never know when I might meet the woman of my dreams! [to my husband... I'm joking :D ...really]) but because of my CD symptoms my husband and I can rarely have sex (and I wouldn't go near anal, my ass hurts so bad as it is!). So we've had to find other means of intimacy. It's tough... but you get creative.

Also, nowadays they can make men new penises, why wouldn't they be able to do reconstruction of the anus? As for the nerve endings, wow... I have no clue but now I'm curious. If you get the answer from your doctor, please let me know.

Keep your hopes up!

*hugs*

Sorry, no idea on what all they'd have to remove with surgery. That would be a good thing to ask your doctor.

Certain diets? There are tons... SCD is quite possibly the most strict, but I hear more and more talking about how well it worked for them... so it may be worth looking into. Other diets are usually some form of, "stop eating what makes you ill..." Which is different for everyone. Almost all suggest eating small meals throughout the day. UC/CD scare tissue can build up and cause "strictures" basically your poop gets stuck... the smaller meals helps prevent this.

(SCD: aka Specific Carbohydrate Diet)

As for sex, I'm female and straight (I think... you never know when I might meet the woman of my dreams! [to my husband... I'm joking %3

Wow Kate! Thank you so much for your post. It really made me feel a lot better. I just read your 4th of July post and I'm sorry you had to have that happen! I do see some humor in it and I'm sorry some people aren't able to see that. I was once showering and started having diarrhea without even noticing it until I looked on my leg.... okay I feel like that might be TMI. I didn't quite find that funny, but a few times I've been eating and have had to literally run across the cafeteria into the bathroom. Once I'm in the stall, I sometimes laugh at how ridiculous that must look! lol.

Prednisone is definitely what helped me get into remission! I just started it again with a tapering dose starting at 20 mg tablets 3X a day and I was just really hyper and ran 11 miles averaging 40 seconds per minute faster than my normal time.... I hope I don't feel it tomorrow when I wake up. Exercise really puts me into a good mood every time I do it, although sometimes I feel so down I don't even want to move. My doctor tells me asacol isn't proven to be very effective, so I've been kind of avoiding it. I really want to see another doctor though, since I feel as if my doctor doesn't like me. I asked him if he could write a letter for me, because I am trying to medically withdraw from one of my previous semesters (the one in which I was hospitalized) since my grades were absolutely TERRIBLE, which is very unlike me. I find it really hard to do well in school under the influence of prednisone and at for 2 months I was taking medication for pain too. Anyways, when I confronted my doctor asking him if he could write a letter to the school senate he immediately refused, before I even showed him the guidelines for the paper. I finally managed to coax him into writing the letter, but I have a feeling it's not going to be a very effective one. I hope my personal statement is enough.

I get three types of rashes that come in the same order each time. I first get hives on my elbows and then it goes to my knees and sometimes my back and lower legs. They all itch a lot and come and go for a week or two. After this rash goes away I start getting red bumps that I can't really feel, but can see around my belly button. I normally don't notice them until I happen to glance down in that area. They last a few days, and then once this goes away I start getting red circles on my upper arms that also come and go. It's really weird, but my doctor doesn't seem interested in the rashes at all when I tell him about them, but like the time before, once I'm done with the rashes I start bleeding in my colon again.

Good luck with getting back into remission, Kate! I am very new to this, and your strength, courage, and experience is very comforting and inspiring.

Hey Rmansker! Thank you for your response. I've never heard about the SCD's before, but that is definitely very interesting. I haven't found any foods that are irritating me, although I don't know how I'd be able to tell if it's the food or just UC's natural course in me making the symptoms worse. I am really sorry that CD is having an impact on your sex life! I'm glad you can be creative!! I should just tell them I can give very good blow jobs ;-) I actually have decided not to tell anyone about it until I must, since that last rejection kind of hurt. I don't think I'll be meeting anyone soon though.

Kyle,

Sorry to hear about your UC issues.

I have had UC since I was around 20 (I am 37) but was misdiagnosed twice. It wasn't until I was 33 that I was finally diagnosed correctly.

I almost always get small red nodules (pimple like) before a flare. I get them all over, mainly legs and just under my hairline on the back of my head. This most recent flare, I got them on my chest and stomach.

I am sick to my stomach almost every morning. I have learned to deal with it. If it is a particularly bad morning, I will hang around the house a little longer before I go to work to avoid an accident.

I don't know about the nicotine patches except that there is a theory that nicotine helps UC. I take Asacol and Imuran (an immunosuppressive drug that is a steroid sparing medicine). I have gone through several rounds of prednisone which is a wonderfully horrible drug. I say that because it works wonders at stopping inflammation, but long term side effects such as mood swings, moon face, eye problems, etc. are very dangerous.

I am not gay, but by the same token I do not judge you for that. Therefore, I really couldn't tell you about your sex life, a GOOD doctor should be able to help you there. I know that the severe portion of my UC is in my rectum and I can imagine placing anything in there would probably not do me any good, but it may come down to a decision you have to make.

As far as diet, everyone is different. I have found that the Ensure high protein drinks work well for me and I seem to get vitamins better that way. But, that may not work for you. Keep a food journal to narrow down what foods work best for you. There is a food journal form on CCFA.org.

I hope this helps

J

Hi - It looks like you have gotten some good responses, but I thought I would just mention a few things about the prednisone and asacol. I am currently on both. I have been on asacol since I was diagnosed back in 2000, and am taking prednisone to help with a recent flare-up. I think the asacol has really helped me and I never have noticed any side effects. The prednisone on the other hand....yes, it is great to get back into remission, but I have night sweats, my hands shake, and I get really hyper. The first time I was on it I gained weight in weird places and my face got puffy.
I think most people do have foods that they can tolerate better than others, and of course it is different for everyone. You might want to start an elimination diet. I am currently on my own elimination diet and all I am eating is rice/rice products (rice milk, rice bread, rice crackers) and white meat. Everyday I add something new to see if I can tolerate it. Canned fruit (peaches and pears) is usually easier to digest than fresh fruit.
I have found dairy products and wheat cause me a lot of pain and gas - so I have been avoiding them completely. Soy milk doesn't even work for me. If you have a problem with wheat/gluten Spelt bread (that you can get at any health food store) is a great alternative - it is really good!
Sounds like you need a better Doctor! That is really frustrating, I don't love the doctor I have now, but my condition isn't too bad, and I am just trying to get myself better with diet and supplements. Some good supplements to take are probiotics, L-glutamine, fish oil, and a good multi-vitamin. I know it is all overwhelming! Especially if you make such a huge change in your diet - it sucks, but you might find it worthwhile.
As for the sex issue.....I can't imagine having anal sex and UC/CD! Ouch!! Hopefully you can get yourself into remission with the meds, diet, and supplements and won't need surgery, and sex won't be an issue for you!
People are weird when it comes to illness. You certainly find out who you can count on, and that's a good thing right? You are in a unique position to find out a lot about the character of a person in a short amount of time. But don't feel like you have rush into telling someone.....I think you will find that as you get better, it won't be as much of an issue.

Thanks Jeff for your response! What did they misdiagnose you with? When I was hospitalized they first diagnosed me with Clostridium dificille and then I had to have TWO colonoscopies in a week before I was diagnosed with UC. I thought it was kind of excessive and I was so hungry. I lost like 15 lbs while I was in that bed! When you are between flare ups are you pretty much symptom free? How long does your remission last? This is my first incident now since Feb 08, so it's been quite a while. I actually didn't take any medication since then, besides a 3 month period of prednisone, asacol, and pain killers. I thought I was in the clear!! I love the ensure drinks. They taste delicious. I take about 16 supplements every morning, but I wouldn't mind having an extra excuse to get ensure. :P

Thank you Allie for your response! I'm glad you've taken asacol for such a long time without any side effects! I am debating whether or not to start taking asacol. I bought the prescription, but haven't started taking it yet just because my doctor said it can make your hair fall out and give you headaches. I'm waiting to see if my flare up is going to get better or worse before I take any further action against it since I don't want to take any medication for no reason. Thank you for the probiotic and diet tips! I'll have to check those out. I eat lots of yogurt and danactive now. Are your symptoms getting any better now? How long has your flare up lasted for so far?

Has anyone ever had polyps in their colon? The doctors found some in mine, so they were promptly removed during a colonoscopy.

To answer your question, I usually have a series of "small flares", maybe 3-4 per year. I have only had one or two really bad ones.

I have developed colitis related arthritis which stays with me but to a lesser degree between flares.

Even though my GI doctor doesn't think stress can bring on a flare (the CCFA has a differing opinion), that is what usually causes mine. I can handle stress, but if I have a string of days and weeks of constant stress, it is a given that I will flare up.

Also, one doctor diagnosed me first with hemorroids even though he couldn't find any. Then next doctor said my stress was causing me to develop an ulcer which he didn't look for using an endoscopy (this was back when they though stress was the primary contributor to ulcers). They were both primary care physicians and it wouldn't surprise me if they knew very little about UC.

I finally just told a different primary that I wanted to see a GI doctor and was diagnosed within a few weeks.