Patient Comments: Ulcerative Colitis - Symptoms

Question:

For ulcerative colitis, what were the symptoms and signs you experienced? Submit Your Comment

Comment from: Sophia1990, 25-34 Female (Patient) Published: July 24

I hope you are all doing well. I’m writing because I’m really suffering with my lower left sided abdominal pain with burning sensation in my vagina area. I have had a laparoscopic surgery a few days ago just to rule out the possibility of having endometriosis. I’m really not well and I can’t afford to pay to the private doctors anymore. I have been diagnosed with proctitis then ulcerative colitis in May 2018. I don’t think the medicine is being effective.

Comment from: josee couturier, 45-54 Female (Patient) Published: January 30

I was diagnosed with ulcerative colitis 6 month ago. My symptoms are bad constipation, can’t pass motion and when I do sometime there is blood or pus or both, bloated, have cramps, back pain, bad stomach, fatigue and fever once a while. My treatment is Asacol 800 ml and most of the time the treatment works but I still have bad flare up.

Comment from: Mamita, 65-74 Female (Patient) Published: July 05

I was diagnosed with ulcerative colitis, after about six months of having various tests and no diagnosis, in 1975. I was by then nearly at death's door, my stools were just blood, and I had vomiting and unbearable stomach pains, always at the same time at night, anemia, and weight loss. I also had arthritis in my left ankle which was swollen and painful. I was treated with prednisolone and Salazopyrine and it was under control in about 3 or 4 months. I have been very lucky that, in the 41 years I've had it, I have only had 3 or 4 flare ups and only one of them serious enough to be hospitalized for 5 days, which were treated with prednisone for a little while. I even stopped medication for long periods, of my own accord, until the doctor told me that Salazopyrine somehow prevents colon cancer. Having a good doctor is vital. My initial one was very good, later ones not so much. I have led a normal life, with lots of stress and work thrown in. I only missed work at the very beginning and the 5 days when I was hospitalized with a flare up. I was on a bland diet to start off with but soon started eating normally, only avoiding plums which I think I can have now. Don't despair! Find a good doctor before your colitis gets out of hand.

Comment from: WorriedWifey, 25-34 Female (Caregiver) Published: March 03

My husband was diagnosed with ulcerative colitis 2 years ago. He has had 2 really bad flare ups that hospitalized him for weeks. His symptoms have included really bad abdominal pain, severe weight loss in short periods of time, blood and mucus in his stool, very watery diarrhea multiple times a day, fatigue and weakness to where he couldn't even stand when hospitalized, nausea and even hemorrhoids. Lately, he has gotten newer symptoms including a fever, breaking out in cold sweats and he has been throwing up everything he consumes and still has bad cramping and liquid diarrhea. It’s almost as if his body is not properly digesting his food anymore.

Comment from: pmunkin, 45-54 Female (Patient) Published: December 31

I had a mild case of ulcerative colitis in 2003 that was treated with medication. After a year I was off the medicines. Fast forward to 2014 July. With no prior symptoms (aside from joint pain I attributed to age) I woke up one morning and passed a lot of blood. I ended up in an aid car to the hospital. In my case I had a rare form of right sided ulcerative colitis. In the hospital they could not control the bleeding with prednisone. After several transfusions and a near death experience on day 4 I had a hemicolectomy and a temporary ileostomy. After 3 months I had the remaining 2/3 of my colon hooked up and so far so good. I am still only 8 weeks out from surgery 2 but I feel good and everything is working. My surgeon said this was an unusual presentation, all the passing out. Get your colonoscopies!

Comment from: Kisha91381, 35-44 Female (Patient) Published: October 08

I urinated, and not feeling at all that I needed to have a bowel movement (BM), all of sudden I felt like I had to go! As quickly as it came it went away! I didn’t even push to have a BM. I wiped from front to back, (only urinated) and the toilet paper was soaked in bright red blood along with a clot! I freaked, wiped again with a wet wipe and nothing. I stood up looked in the commode and all I saw was the same bright red! My father died at the young age of 51 because of something to do with him always throwing up or passing it through his bowels; maybe ulcerative colitis! I am so scared I'm dying.

Comment from: Bella, 55-64 Female (Patient) Published: October 19

I am constipated off and on, I wonder if this is normal for ulcerative colitis.

Comment from: kirmart, 19-24 Female (Patient) Published: December 03

I have been coping with ulcerative colitis (UC) for 4 years now and around December every year it seems to be the worst. I am a student in graduate school so the pain maybe caused by poor diet/lack of sleep/stress. I am on Asacol, Imuran, and Simponi. I have yet to go 6 months in remission. It is nice to see people have gotten in remission and I am looking forward to trying some of your suggestions.

QUESTION

Ulcerative colitis affects the colon. The colon is also referred to as the... See Answer
Comment from: uc, 35-44 Female (Patient) Published: July 17

I have had stomach issues all my life due to stress. I'm turning 40 this year and my doctor diagnosed me with ulcerative colitis last week. I had the bandings of hemorrhoids in January and then more surgery after that with my rectum. During that time the rectal bleeding never stopped and I was having flair ups and lots of sitz baths after going to the bathroom 10 times. The doctor put me on two types of medications for it. I now find myself telling my husband often that 'today is not a good day for me' after suffering abdominal pain, diarrhea, rectal bleeding and several bathroom trips.

Comment from: MissBunny, 55-64 (Patient) Published: June 28

I was diagnosed with ulcerative colitis (UC) approximately 2001. It was very severe and the pain was excruciating. I had weight loss, made 15 trips to the bathroom each day, screaming in pain and had no appetite. Hospital put me on intravenous steroids as I was very dehydrated. They were unable to do a colonoscopy for fear of rupturing my ulcerated colon. However, I was able to go into remission quite quickly. I was on steroids for two weeks but refused to continue taking them. I was then put on Asacol, 6 tablets per day and have been taking them religiously. That medicine has now been changed to Lialda, 2 per day. I eat whatever I want but it’s a very healthy diet. Lots of fruit, vegetables, fish and fowl but not red meat. I don’t smoke anymore and I rarely drink alcohol. More than 2 cups of coffee per day irritates my colon. Exercise is very important. I exercise at least 5 days per week. The biggest cause of UC is stress. Try to exercise and meditate‚Ķ it does help. I have had a few small flare ups due to stress but seem to be doing quite well. I have colonoscopy every 2 years as those with UC have a higher risk of colon cancer. Good luck everyone.

Comment from: AG, 45-54 Female (Patient) Published: May 30

I was diagnosed with ulcerative colitis (UC) 3.5 years ago. I was on Apriso, until my hair started falling out. I tried decreasing the dosage and would end up going into a flair with urgency (up to 19 times a day), cramps, nausea, bloody diarrhea, night sweats, fever and weight loss, etc. Prednisone would stop the flair, Uceris did nothing for me. After losing half my hair volume, I quit taking Apriso this year in March. I am working with my doctor to find a different medicine that I can tolerate and that will not make my hair fall out. We are looking at the thiopurines.

Comment from: uk, 35-44 Female (Patient) Published: February 28

I have had UC (ulcerative colitis) for 23 years now which is managed taking mesalazine tablets. I have very few major flare ups but eat a bland diet and haven"t drunk alcohol for the 23 years but if you want to feel well you have to do what you have to do! I get mild flare ups i.e., blood, mucus, pain and urgency, and tiredness but I can cope with these. When I get a flare up I am bed ridden for 4 days in agony and with sickness and diarrhea. UC is responsive to diet - stay bland!

Comment from: eman1130, 19-24 Female (Patient) Published: February 18

I’m 22 years old, I’ve been diagnosed with chronic inflammatory colitis at 20. I had all kind of treatments for a year and nothing seemed to work, so I got off medicines and it’s been a year without medicine. Problem is, it is getting worse; I have constant pain in my right abdomen side and I feel like I’m full all the time, my right side is slightly higher than my left and sometimes I feel like there is something solid there. My abdomen always cramps and sometimes there is a lot of gas. My stool is kind of soft like it has water in it and sometimes thin but mostly normal and sometimes watery. When I go to the bathroom I still feel full. Recently my lips are kind of dry and my saliva is thick. What’s really makes me afraid is my right side, wondering if it could that be cancer.

Comment from: Jessica, 19-24 Female (Patient) Published: October 24

I have been living with ulcerative colitis for the past 7 years and I was diagnosed in 2007. At first I did not take it seriously because I did not know much about it, but then it started getting worse. I could not attend school because of the urgency of having to use the bathroom which embarrassed me; I started having bloody stool and even passing stool more than 5 times a day. I eventually lost weight. At times after a bloody diarrhea I would have cramps and also fever. As a result I fell into a depression because I could not leave the house or attend any events. I had to stay in for a while and changed my diet which was very difficult.

Comment from: njguy, 35-44 Male (Patient) Published: March 03

I had ulcerative colitis since May 2013. It wasn"t until December 2013 that the doctor finally ordered a colonoscopy. Initially it was attributed to me getting married. That wasn"t the case. It didn"t stop. Never saw too much blood, but I did have fatigue, moodiness brought on by being tired and from having to alter my life around the bathroom. I can travel less and it has affected my sex life. As far as medications, the only one that works is Xanax. And that is to take the frustration away from all the other medications that I"ve taken that don"t work. It"s now February and I"ve basically given up on doctors. I think this is something that will just always be a problem and it"s easier to accept having it than thinking things can ever go back to normal again.

SLIDESHOW

Ulcerative Colitis: Symptoms, Diet, Treatment, Causes See Slideshow
Comment from: tucker, 13-18 Male (Patient) Published: August 14

The symptoms I experienced for ulcerative colitis were bloody diarrhea, severe abdominal pain and weight loss. My doc said the UC is not that bad in me but it could get worse if I don't follow a healthy diet and take dairy products. He said that is the only key in UC to follow the diet given by the doctor and medicine plays a little role, it just makes your symptoms a little better for some time but after that it depends just on your diet.

Comment from: 45-54 Female (Patient) Published: August 13

I am a 49-year-old female, and I was diagnosed with ulcerative colitis (UC) only three weeks ago. My symptoms started with uncontrollable diarrhea, which then turned to all blood, and stomach cramps. I couldn't eat and was having dry heaves, hot and cold flashes. I went to the ER, where their first guess was a hemorrhoid aggravated by the diarrhea. Then they gave me a CT scan. I was admitted, and after three days, they gave me a colonoscopy, which showed that I had UC. They then started me on sulfasalazine, and my symptoms ceased. My stools are now formed again. I was lactose intolerant before my diagnosis, but I have now given up all forms of dairy. I am now eating a low-fat, low-carbohydrate diet in hopes of staying in remission. I have read of remissions lasting from 10 to 30 years, and I'm keeping my fingers crossed that I'll be one of the lucky few.

Published: July 31

I was diagnosed with ulcerative colitis this summer after a three-day stay in the hospital, combined with a high fever, multiple bowel movements and a follow-up colonoscopy. This flare-up has been going on for six weeks. I have managed to work, but I have had to leave early or miss a few days. I am on Canasa suppositories and Prednisone. It seems to be lessening in voracity, but I am still going eight or nine times a day, sometimes with nothing more than spasms and mucus. It has affected most things in my life, including travel and sex.

Published: July 15

I was diagnosed with ulcerative colitis in 1994, when I went to the emergency room for rectal bleeding. For years, I was not in a financial position to get treatment. I tried raw foods, going vegan for a while, and it kept symptoms to a minimum for a few years. Then two years ago, I started having diarrhea with mucus and sometimes blood several times a day. Every meal ended with an emergency trip to the bathroom. Then my symptoms swung around the other way, and I stopped digesting food at all. I'd have a lump of food in the transverse colon for days, and the pain and swelling was unbearable. Eventually, I would get frustrated and drink a pot of black coffee so I could go to the bathroom, which ended up being just as runny and bloody as before. I've been waiting a year for my insurance to kick in at work. Now I'm waiting for approval on my referral to a specialist. I am afraid my poverty is going to cause colon cancer.

Published: June 30

I was diagnosed with ulcerative colitis last month after I was admitted into the hospital with severe diarrhea and bile vomiting. I went to the doctor twice and they said I had caught a bug and it should pass with antibiotics. After three weeks of abdominal pain and not being able to eat, I figured I'd better go to the ER. The first time I went to the ER, they said the same thing as the doctor and sent me home with more potent antibiotics. Three days after no changes, I was back in the ER and was admitted for five days. After a colonoscopy they diagnosed me with ulcerative colitis, and now I’m on Asacol, medicated enemas, and steroids in an attempt to get it under control. After four weeks now, I'm slowly getting better. My stools are getting more formed, and my cramps are usually in the afternoon while I'm at work because I'm trying to hold my stools. The only thing now of concern is my liver counts are elevated, so I have to take weekly tests to keep an eye on that. I feel 75% better than when I went to the hospital, but I'm ready to get my life back to some sort of normalcy.

Comment from: quade, 25-34 Male (Patient) Published: December 01

I have had ulcerative colitis (UC) since I was born. In the early 80s they didn't know what it was. My poor mom went through agony. But so did I. I think that UC untreated is so painful and isn't fun for anybody. Two years ago I was in isolation in a hospital here locally. It was not fun. I was in isolation for 9 days and that was awful. I don't wish that on anybody. I think what I am trying to say is that UC is a harsh condition that doesn't have a cure. If you have this make sure that you have a good specialist and make sure that you have good support. I have to say that my reason for getting through this is that I have adjusted my diet and if you have UC I would suggest that you might do the same.

Comment from: Skeeter, 35-44 Female (Patient) Published: February 14

I was diagnosed with ulcerative colitis about 7 years ago. I was on steroids up until November 2012. I started taking a 50 billion probiotic and it has helped out a lot! The steroids affected my bone. At my age I now have arthritis. I still go to the bathroom more than the average person but, It went from 10 to 15 times day to 5.

Comment from: VS1, 55-64 Male (Caregiver) Published: May 22

The UC symptoms I experienced included blood in my stool, diarrhea, and abdominal pain.

Comment from: male, 55-64 Male (Patient) Published: April 25

I was treated for moderate to severe ulcerative colitis in August of 2012. The Doctor prescribed Asacol, which didn't work. Two weeks later I saw another doctor, who prescribed steroids and Humira. I have been on the steroids and Humira for nine months. The steroid is kicking my butt, as I find it hard to breathe and have had lots of swelling. I think it’s hard to find a good doctor in this field.

Comment from: ziz, 45-54 Female (Patient) Published: August 14

I am now a 50 year old woman. Two years ago I was diagnosed with UC. I had it for a good year. All the usual symptoms. Put on Asacol then couldn’t tolerate it due to liver counts up. I put myself on Ginger tablets and Aloe vera Tablets, prayed a lot and thank God it has gone now for over a year. Doctors have discharged me I still take the Ginger but stopped the Aloe vera. Normal once a day stools now.

Comment from: Lalsonflwr, 45-54 Female (Patient) Published: August 08

I have had UC since 1995. I had to use sulfa drugs and prednisone to get it under control. I moved in 2004 and had a new doctor. I had a bad flare-up and he wouldn't give me medications without a colonoscopy so I switched doctors. I had very good luck with the new doctor, who prescribed Imuran. Eventually, I got off of the Imuran, and now I’m only on Colazal. My lovely insurance decided I had to have the generic for Colazal though, and I have been flaring ever since. I am also taking the Rowasa enema, which usually helps, but it still takes time. I have noticed that it takes about six weeks from the start to be back to somewhat “normal.” I haven't found any foods that work better or to avoid personally. I know it's hard to deal with. I am a flight attendant and have had to be off sick this time until it is under control.

Comment from: Colleen, 45-54 Female (Patient) Published: August 06

I have had colitis since I was 17 years old. I'm now 54. My colitis seems to resurface every three years. It has been a painful few months, but the Prednisone seems to be helping, although I'm not back in remission yet. My mom was wonderful when I was 17, helping me with this illness, and it makes all the difference today. I almost died in 2004 from this illness; it will get worse if not treated immediately. Things that help: Get a doctor you feel comfortable with, has the experience and current knowledge to help you, and commitment to help you. Be kind to yourself, and be your greatest advocate to deal with this illness and put it in remission. Keep your stress low. I firmly believe stress is a trigger to this illness. Eat healthy, get as much rest as possible, and stay positive that you will feel better and will be able to enjoy life again.

Published: July 25

My ulcerative colitis symptoms started instantly and came out of nowhere. There was no building up to a disorder, it just came. It started with sharp, cramping pain in my lower left abdomen. I couldn’t make a bowel movement, though I felt like I needed to. The pain got so bad that when I stood up, I would double over. I couldn't eat. After three days of that, I went to the doctor and then to the emergency room about three or four times. Everyone seemed clueless and did nothing for me other than numerous pap and pelvic exams. I was so sick I was throwing up water and couldn't eat anything. This lasted for a month. Finally I begged my doctor to put me in the hospital because I felt so horrible. I couldn't take care of my kids or keep up with the housework. I felt very weak and lethargic. In the hospital, they finally did a colonoscopy and an X-ray. Then I had an answer and have been pretty good on Asacol since then. It has been a year this last January.

Published: July 09

When my ulcerative colitis flared, or flares, my signs and symptoms consisted of rectal bleeding, diarrhea and pelvic cramps and urgency. This has been consistent of every flare-up I've had.

Published: July 07

I have had UC for 8 years, seems to be getting harder to treat. I have run the gambit of drugs, the only thing working now is prednisone, I am tapering down to 20 mg with little problem. Hate the side effects, extra 15 lbs, facial puffiness, hump in the upper back area, swelling of feet and ankles. The next step will be Imodium. The only thing that makes it bearable is a great doctor and a wonderful understanding husband. Good luck to all who have the UC curse.

Published: June 27

I have had ulcerative colitis for over a decade now. First symptoms were uncontrollable diarrhea, bloody stools and mucus. I thought I was dying. My doctor put me on Azulfidine at that time. I barely have any symptoms at all now. I stopped eating dairy!! That did half of the trick. I can have some dairy now. Less refined the better. So, diet, exercise and Azulfidine have made me almost totally free of symptoms for over many years now. I am down to 500mg once a day.

Published: June 25

I have suffered for a year with mucus, bleeding and consistent loose stools, I have to manually remove, as I think prolonged spasms have tired my muscles so much I think my bowel has given up! I have the runs for hours, then nothing for days but cramps, not knowing when I’d next need to go, I now don’t know when I have to go, I don’t have any feeling in my anus, apart from back ache and pressure, I don’t get the urge to go, until I have sat for an hour or so, then the spasms come, and I’m crippled, long afterwards, this has effected me so much in a personal and hygienic way, my working life too, although I’m lucky enough to live close to work, I now have to visit home regularly, to sort myself out or I’ll be in utter agony for the day, and if I don’t, by the time I get home, I’m ready for vomiting, I cant eat right, as soon I start to, I feel full, and then the cramps come again. I have just come from the specialist today after the doctor finally referring me and changing his mind to me having constipation, the specialist thinks I have colitis, (I have pain left and right and in my diaphragm constantly still with the bleeding and mucus). I’m booked to have a camera in two weeks and a biopsy, but feel I can’t wait that long, it’s so scary and painful.

Published: June 16

I have had Ulcerative Colitis since 1997. The longest time I have been in remission since then is three months. I have continual bleeding, mucus, and abdominal pain. This can come at any time during the day or night. It has now limited my life as I don't want to leave the house in case of an emergency. The only medication I can take is prednisone, which is now not working due to the continual use over the last 11 years. I am now looking at have my large bowel removed and having a j-pouch created to hopefully get a better life.

Published: June 12

I have been diagnosed with ulcerative colitis since 1997. I have been on Salazopyrin with a course of prednisone and also Asacol enema. I've already had 5 colonoscopy’s. On the 3 June i was admitted to hospital with another flare up. I am now on Asacol tablets for the past 2 weeks but my problem continues. I have bloody diarrhea with mucus. I have learnt that I got to live with it.

Published: June 10

I've been experiencing bloody diarrhea, abdominal pain, and nausea for a year now. I was originally diagnosed with non-specific pan colitis and now know that I have severe ulcerative colitis affecting the entire colon. Asacol/Sulfasalazine combined with Prednisone failed to take control of my symptoms and 6-MP has been to slow to take effect while the Prednisone is tapered down. I am currently awaiting surgery and, despite 40mg Prednisone/day, I am still having 10-16 loose bowel movements a day. It affects my sleep, my eating habits, and, whether from the Prednisone or the pain has made me largely unable to deal with the normal stresses of life (someone cutting me off on the road, etc).

Published: June 02

I have had ulcerative colitis since 2000. It makes life quite difficult at times. No one knows what you go through with this disease. For about the first year, I had a lot of pain, bloody stools, and diarrhea. For the last few years, I just have severe pain in the left side of my abdomen. Last time I had a colonoscopy, my doctor said that everything looked "good," but the pain continues unexpectedly.

Published: June 02

I had no signs or symptoms of ulcerative colitis until I had a bump on the wall between my vagina and rectum that grew each day and the pain was unreal. I finally got enough nerves to go to the hospital where I was told that I had an ulcer in my rectum that abscessed through my vaginal wall and up the entrance to my vagina. I had to get emergency surgery.

Published: May 27

Hi, I have had UC since 1996 with periods of remission. I have been symptom free for about 3 years but lately my symptoms have returned.

Published: May 27

Hi, my 12 year old son has just been diagnosed with ulcerative colitis. Symptoms of horrific tummy pains, thick diarrhea with blood and mucus, these symptoms were only in a week. He is on 10 tablets a day with review to specialist next week.

Published: May 27

I experienced diarrhea only. After colonoscopy I was said I have ulcerative pancolitis. No bleeding no pain.

Published: May 27

Bleeding through my rectum, pain in my large intestine, diarrea, bloating.

Comment from: 55-64 Female Published: August 12

My Mom was diagnosed with UC. UC has truly affected her life. She has experienced bloating, bleeding, diarrhea, nausea, vomiting, fatigue & loss of appetite. She takes medication, but there is no hope that this is ever going to go away.

Comment from: JKB, 65-74 Female (Patient) Published: August 12

My second flare started in March with severe diarrhea. The first day then blood started showing in bowel movements that increased over a period of time. Soon there was bloody mucous instead of solid waste. I’m still not in remission, in fact, symptoms have increased slowly, but steadily until this last week the symptoms have seemed to calm down a little.