New Here...could use some encouragement and advice!!! (a tad long)

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youbadsquishy
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/18/2008 12:36 PM (GMT -7)   
I'm 22 yr old female recently diagnosed with colitis. I don't yet know the extent of my colitis...I'm having my colonoscopy on Tuesday. I'm actually looking forward to it because I'm in pain and have missed so much work cause of this...here is my story:

A few years ago I noticed I had bowel problems...I'd have diarrhea for like a week or lose some weight, or have really bad pain in my abdomen and my back and such. I just attributed these problem to "well, i must have a problem with dairy" and "my dad has an active stomach". These problems would come and go, and vary in intensity. I blew them off like I said.

about 8 weeks ago I noticed that there were a lot of (what I thought were) tomatoes when I passed my stools. You might think I'm dumb but I actually eat a lot of tomatoes (I'm from the South). So, since I'd also noticed I was passing some other foods (corn, lettuce, carrots, fruit, and oats/grains) after I ate them I just thought "Well, must be my system just acting up...whatever". I really thought I was passing tomatoes! Also around this time I noticed that I was having intense lower back and lower abdominal pain. I attributed this two things - my mom has degenerative disc disease so maybe I'd hurt my back, or since I'd just started my first out-of-college job and I was sitting a lot an wearing heels a lot...that might be the problem.

As the 8 weeks passed, and the holidays passed I noticed I was basically unable to be away from a bathroom for more than about an hour. I was passing more "tomato" even though I'd stopped eating it. I got bronchitis and was out of work for a week *last week* I realized I had a fever and again attributed this to something else - the bronchitis. But, everything was really taking an emotional toll so I talked to my mom.

Last Saturday she came over to visit my hubby and myself and checked out my poop -- that's what mom's are for right!?!? -- She freaked out and told me I was passing blood clots...we did some examining (VERY GROSS - I know!!) and realized the blood was interwoven throughout the stool, and I was passing more and more of that type of very loose stool, plus huge clots of blood. We went to urgent care, I still had a fever and all of the other symptoms I mentioned above - was checked for tears or fissures or hemmorhoids...I have none. I was sent to a GI dr. first thing on Monday of this week. I was told I most likely have colitis. Made the appt. for the colonoscopy.

Now, I'm sitting here, still in significant pain, hardly able to poop at all even though I need to...I'm barely passing anything....I'm passing lots of blood clots and a little actual diarrhea-like stool. It's not constipation...I've had that and this doesn't feel the same way at all. I have basically not left the house except for work two days this week *it's a full time job!!* in about three weeks. i just lay on the couch bc i hurt. i get hungry but don't want to eat....once i eat every symptom gets 100 times worse.

I'm just scared, hate that I'm so young with this, hate that I won't be able to eat the foods I love anymore, hate that everyone around me says they read/heard "it's not that bad" and I just want to go to the movies or eat dinner without being embarrassed.

Can anyone just tell me what I can expect in the colonoscopy, afterwards, and once I'm officially diagnosed? Will medicine help? Will I be losing a significant amt. of weight due to my inability to eat any rough veggie, dairy, citrus, tomatoes, and sugars? When should I go to the ER? I almost went last night but the on call DR said not to unless my fever went over 100.......I'm just lost and frankly VERY depressed about this....I feel stupid this has been going on for at least 8 weeks....most likely years and I didn't pay attention.....Help!!

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/18/2008 1:12 PM (GMT -7)   
Well, I'd say first of all to be careful of your diet and try not to stress yourself out. You will find out exactly what's going on from the colonoscopy, don't jump to conclusions yet. I know how you feel exactly. I've had this since 15. I always have thought why me, why this stupid, embarrassing disease that most people don't understand?! Over time you figure out what you can and can't eat and other ways to help yourself. Don't feel stupid. It is hard to come out and ask for help with this. I was so embarrassed at first. LOL, first colonoscopy, there were so many people in the room, I was mad thinking why do all these people have to look up my butt? Now I could care less if the whole hospital comes in after so many times. It sounds like you are flaring up right now. I'd stick with the BRAT diet. Bananas, Rice, Applesauce (maybe not so much applesauce) and Toast or other light foods to keep your strenghth up. I drink Gatorade when I'm flaring, but I guess it has a lot of sugar and it might make some people worse. For me, I feel like it keeps me hydrated and gives me a little strength.

Let's see. The colonoscopy. To me, the prep is the worst because I get very nauseous and my rectum burns a lot after going to the bathroom so much and I get so weak. Bring a list of all meds you take (even tylenol and things like that) cause they need that info. Wear comfy sweatpants or something. Oh and wear a long pad and bring one too. In case of explosive gas from the prep and then after the test. Before the test they will out you to sleep and you'll probably wake up when it's over. Then you fart like crazy and may see mucus, water, and blood from the biopsies. My 1st one, they talked to me after I came to and I found out I had UC. This last time, I didnt talk to the doctor till a week later. You have to have someone drive you home and try to go to bed when you get home or eat something light and relax.

As far as medicine, noone can tell you for sure what will work for you personally. Prednisone should help and may be the quick fix they choose till they figure out what else will work for you. There are several types of pills and enemas and treatments depending on where the disease is in the colon/rectum or somewhere else if it is Crohn's. It takes time for most people to find the right medicine for them if they find one.

about losing weight, it depends on what medicines they put you on, how well they work for you, etc. Going to the ER... I am not sure. I guess if you feel extremely weak or feel you need to go because you cannot hold any food in for several days. I am really not sure because there are times I should have gone but didn't but made it through ok at home. Don't blame yourself, ok. And don't feel stupid. And it's normal to feel depressed. Try not to get too worked up though, it can make you worse. I hope the colonoscopy goes well.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/18/2008 3:49 PM (GMT -7)   
Hi and welcome to Healingwell :) Princesscolon, has pretty much nailed most the info you are going to get. I was diagnosed when I was 22 also and if in fact you have UC - please don't do what I did! I was in major denial and didn't take my medications like I was supposed to. My Uc had spread I believe due to my ignorance. I thought, eh - it won't be so bad if I miss this dose or that dose. Big mistake!

Once you know the results of the scope and if it's Uc, it's best to come to terms if you can that this is a lifelong illness. It is totally unfair! But with the proper knowledge of this disease, you won't feel as scared and you will feel more in control of your illness. Please visit our resource section here on HW or go to www.ccfa.org and arm yourself with knowledge.

And please don't feel stupid! I let mine go on for almost a year before I had the courage to see a doc about it.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/18/2008 5:43 PM (GMT -7)   
I just wanted to say welcome to the forum. I, too, got diagnosed shortly after starting my first full-time out-of-college job. I can completely relate to all the feelings you're going through and all the questions you have. It is unfair to get this disease, especially at such a young age. I personally was very, very sick, but I did not lose a ton of weight (about 9-10 lbs, but I am already very thin). I gained it all back when I got on meds and my body started to heal. The meds really have helped me significantly. I think they help most people, at least to some extent.

I eat anything I want to now. Some people restrict their diets and that works for some, but food doesn't really seem to affect me. Overall, I eat a pretty healthy diet, lots of fruits and veggies, whole grains, lots of yogurt. When I was first diagnosed, anything I ate or drank would send me to the bathroom, but it really does get better as soon as your intestines start to heal.

As far as the colonscopy goes, if you have to do a prep beforehand, that is the worst part. If you've been having lots of diarhea, your doc. may not make you do one. The actual procedure for me was fine, because I had what they call "twilight sedation." It's not like putting you out completely with anesthesia but most people don't remember anything from the procedure. I have had 2 c-scopes and could not remember a thing from either of them. Afterwards, you might be tired/groggy for a day or two. You might have slight bleeding if they take any biopsies, but it sounds like you're already bleeding anyways. You also might feel some abdominal discomfort/gas pains from the air that gets pumped in during the scope. That only last one night for me. It's great they got you in to see a GI and to get a scope so quickly...it takes some people months to get in.

Hang in there. Try to be patient until you get a diagnosis and know what you're up against. And feel free to ask us more questions whenever you want. This forum is a great place filled with really caring people and tons of information.
23 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D); fish oil


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/18/2008 7:22 PM (GMT -7)   
Welcome to the forum; you'll find a lot of support and information here. It's so normal to feel scared and even angry right now. I am the only person in my family with UC, and I also wondered "why me?" The only answer I ever found to that was "Why not?"

With proper management, there is light at the end of the tunnel. The combination of medications I'm on now has put me into complete remission and I have no bleeding, no diarrhea, and my energy level is back to normal. I eat pretty much what I want, although I still limit the amount of raw fruits and veggies, fatty foods and really spicy foods.

One tip for the colonoscopy prep: they usually have you drink huge amounts of liquid with some type of laxative in it. It usually tastes gruesome. If you ice it down to get it really cold, then drink through a straw, it isn't so bad. Put the straw toward the back of your mouth. That way the liquid bypasses most of your taste buds and it's easier to get down. And stay really close to the bathroom, no one else is allowed to use it during your prep.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/18/2008 8:57 PM (GMT -7)   
Welcome! I am sorry you are having such a hard time right now. In the beginning, between feeling sick and trying to comprehend the whole UC issue, it takes time. It can be overwhelming understanding all the different meds, treatments, ups and downs. There is alot of great information on this forum and for us, it has been a godsend. Just knowing there are others out there experiencing some of what you are experiencing helps.
Don't berate yourself for missing the "cues" that something was wrong with your system. Many of the "seasoned" UCers here will tell you that either they also didn't realize it was UC at first or that when they flared a 2nd or 3rd time, they missed those cues too. In my daughter's case, we just figured she had a stomach virus (at first) and then thought maybe it was something she was eating. She only lost weight when she was in the worst of her flares (at the beginning). Once the medicine kicked in, she gained it back. When the doctor told us she had UC and prescibed asacol, we figured it would be like an antibiotic (10 days to 2 weeks and then she'd be better). Give yourself time to heal. And ask lots of questions on this forum. Feel better soon.
--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 5 mg prednisone, 2 tabs 6-mp
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 1/18/2008 9:51 PM (GMT -7)   

HI!  I just want to welcome you to the forum! 

I would love to advise you on your concerns, but everyone else gave GREAT info before me. 

Ill tell ya a bit about me,  I thought I had the stomach flu when I was first diagnosed.     The thing that finally got me to the doctor was the unrelenting severe stomach cramps I was getting.    I thought the blood I was getting was due to hemorrhoids or the IBS that I had in the past.   But when I came to work, and couldnt' do a thing without the WORST stomach cramps ever,  my team leader sent me to urgent care,  and so my journey of blood tests,  flex sigs/colonoscopys/biopsys,  and meds began.   I had to try several meds to get me in control  (still trying to be sure I"m on the right maintenance meds).  But until recently,  for the acute flare ups, prednisone always did the trick of getting me feeling better.  Then for maintenance had to find the right combo.  Hang in there, hopefully you will feel better soon. 

This forum is a Godsend!!   It is so reassuring and comforting to talk with people that truly understand exactly what your going through.   (I could most honestly feel your pain as I read your message).   Also great resource to find out info....again,  hang in there!!   We're here for ya!


                                          ~Christie
40 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone 20mg 10mg 5mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 25 units daily, Novolog 10 8 5 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/19/2008 10:14 AM (GMT -7)   
youbadsquishy - Welcome to HealingWell! I have to say, I LOVE your screen name! Gave me a good laugh :) We all know that we'll take any laughs we can get!

Lots of good advice given. I would only add - make sure you have something to keep you occupied during your prep. I like to do word fill ins or suduko or read those trashy magazines that you normally wouldn't read :)

After my c-scope, I felt the best that I had in months! My mom was with me (gotta love the mom!) and we ate a big meal and then went to Barnes and Nobel (our fav store!). There I found a book on UC and read it on the way home - 80 miles. After not knowing what was wrong with me, it was very relieving to have a name for it. That way I could be proactive and learn more about it.

Your diet is something you will have to figure out. It's very individual - what one person can eat might but another person. However, most agree that lean protien is necessary for healing. I like turkey breast when flaring. Another thing many are in agreement about is that while flaring, dairy is tough on the system. I make mashed potatoes without butter and milke. They're actually more like smashed potatoes... But they add some bulk! Raw fuits and veges are hard to digest, so until your colon heals up, cook them into "oblivion". Use the fork test - if you can smash them with a fork, using little force, then they're soft enough. That's probably enough for now. Let us know what other questions you have :)

Let us know how the scope goes!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


youbadsquishy
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/19/2008 12:38 PM (GMT -7)   
Thanks to EVERYONE for the words of advice...and especially comfort. Last night was the first night I have been out of the house for anything but work (when I can work) during the past 3 week. I had to sleep all day beforehand, couldn't join in on the pizza (ate a plain chicken breast for dinner), and had a cup of ice in the movie theater. I was starving by the time I got home but I didn't have any trouble besides some lightheadeness which is routine for me right now. I was so happy to do something normal!!

Today I start my low-fiber diet as part of my prep for Tuesday's colonoscopy. I am feeling iffy - mainly because any food makes me feel blah right now. I am looking forward to Tuesday and have a stack of crosswords for Monday's prep...my dad just had a colonoscopy (which I was just mocking him about!!) and gave me a tip - to take a little table into the bathroom with me and do my crosswords. SO, today my outlook is more positive. I guess everyone here has good days and bad days emotionally....I get so upset and depressed. I'm very luck to have a great boss who is understanding and wonderful....but some days I get so depressed....any advice on how to cheer up a bit on those bad days? Or will they just pass and get less and less?

Thanks again to everyone!!

serendipity24
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/19/2008 12:56 PM (GMT -7)   
It's good to hear you're feeling a little better about things. And kudos for going out! I was diagnosed while I still lived in the dorms in college. The whole public bathroom experience while in the middle of a flare was embarrassing and a bit depressing for a while!

I tend to be a 'glass-half-full' kind of person, but I remember quite a few days where I'd literally be crying on the toilet--because of pain, because of pitying myself, because I just wanted to be healthy again. But I think I found a lot more peace and happiness when I finally came to terms with the fact that I was sick, that I had a great supportive network of family and friends (even if they don't always understand what I go through), and that my doctors were doing everything they could to treat my symptoms and make me feel better again. I definitely think time heals...I know I'm much more comfortable with myself now than a few years ago. Just hang in there!

Like some other members have said, once you get an official diagnosis and start on some meds, you should start to feel a whole lot better in a fairly short amount of time. I was on a very restricted diet for a while and started to add foods back in one at a time. It was the only way for me to know which foods made me run to the bathroom, and which ones I could tolerate. I've finally started adding fresh greens into my diet again after almost 2 years without them!! I never thought I'd miss salads so much! Take it slow and steady and use your support network to get you through!

You're already one step ahead by finding this forum so soon! Truly the best resource around!
Good luck, and have fun on Demerol in your colonoscopy! It's my favorite drug!
Rachel

23 yrs old
Diagnosed with UC: March 2004 with probable IBS component

Currently taking:
Asacol 4pills 3x/day
Prograf 5mg/day
(Prograf is my miracle drug! It doesn't seem to be well known, but it's fantastic!)

Previously Tried:
Prednisone (works, but such awful side effects!), 6-MP (gave me acute pancreatitis), Entocort, Cipro (antibiotic), Bentyl, Canasa suppositories, a couple different enemas

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