Community Forum

I was diagnosed in October of 2020 with Ulcerative Proctitis and quickly found out one of my symptoms are unlike many others. My UP comes with severe constipation with a side of urgency and a sprinkle of diarreha here and there. My bowel movements are so irregular... and when I have "diarreha" it is mostly blood and mucus and the residual meselamine suppository I take nightly. 
Alongside with meselamine I also am on Linzess to help with the constipation... which works sometimes. 
I have also gained weight... really fast. In the past 9 months I have gained 33 pounds and I cannot seem to get it off. It just keeps climbing. 
I had bloodwork done that came back normal. 
I've tried dieting and that either flares me up more or yeilds no results.
I've tried exercising but that only initiates the urgency feeling like I have to run to the restroom and then my bowls try to push and nothing comes out usually, aside from maybe mucus and blood. 

I feel so alone with my symptoms and weight gain. I have gone online for days on end trying to search for people to relate to. I am not sure whether to talk to my GI, find a new GI, my primary care or some sort of health therapist. 

Does anyone at all have any similar problems? Any advice?

Reply posted for ZephyrChuck.

good health to you

Reply posted for BeauutifulChaos.

I see.your post was a while ago. I hope your symptoms have improved since then. I was diagnosed with Crohn's Disease many years ago. I was 15 when it reared it's ugly head. It got worse and worse as I went through high school. Out of high school, I began working as it continued to get worse. I went to the emergency room a couple of times and the tests showed nothing. They refered me to a gastro doctor. Again, the tests showed nothing. I do have to explain that back in the 1970's, they did not have the diagnostic equipment and meds they have now. Anyway, the gastro doctor told me it was all in my head and I was wasting the insurance companies money. I left after using some colorful language on him and did not go back to any other doctor. As time went on, I got worse. One morning at work, 14 months after the gastro doc told me it was all in my mind (I was 20 years old), my colon ruptured. At the hospital (the emergency room was full) they left me sit for hours. They thought I had a stomach ache. When they finally took me back, the doctor probe where my appendix was and I almost came off the gurney. He told the male nurse to get me shaved ASAP and get me to the OR. Many hours later (my mother thought I had died in the OR), I was taken to a room. The doctor came in and gave me the news. I had Crohn's Disease, my Colon was severely diseased and perforated and so was my small intestine. So, they removed my ascending colon and some of my small intestine. So much for it being all in my head. But, yes, it is lonely when no one can understand what you are going through. Years later, after many medicines (I took prednisone for a long long time and ballooned up from 145 to over 200 pounds. Though, I eventually lost that when I came off of the prednisone. Over the years, I had one symptom after the next. Fistula with surgery. Mouth and stomach ulcers. Diarrhea. Another bad spot in my intestines that they had to hit with prednisone again. And numerous side issues that come with IBD. One med that made a difference for me was Nexium. I was always having severe acid issues. At 66, I still have issues, but the severity of them has lessened a great deal. I have extenuating issues also. Severe arthritis, I get sick (catch viruses easily) a lot, because of the immune issues. My brother and sister, who have known about my CD since diagnosis, still think it's a joke that I get sick often and have other problems. So, it is a lonely road. One thing that has helped me is my second wife is very understanding. The first wife, who was a nurse, never bothered to read about or understand the issues with Crohn's Disease. She couldn't understand when I was having problems. So, my hope for you is to find a companion that understands your disease and helps you through it. If you haven't already found one since your last post. You should get back on here amd read the words of encouragement that people are posting for you. Good luck with your disease and your future.

Reply posted for BeauutifulChaos.

You can always reach out to me I'm sorry that you feel so alone my email is gameofcrohns@icloud.com 

Reply posted for HermanGKowal.

I'm so sorry that you are going through all this an I agree colonoscopies don't lie but you don't never have to feel alone you can always message me I'm a safe space myisha king on Facebook and gameofcrohnsnchronicillness on Instagram Twitter gameofcrohns_

Reply posted for BeauutifulChaos.

I'm so sorry you're feeling alone and lost and about your weight gain I know all too well the effects of Ibd have on you as I've been living with it for 14 years you can inbox me anytime on Instagram @gameofcrohnsnchronicillness twitter @gameofcrohns_ and friend me on Facebook Myisha King I'm always available to help in the ibd community I'm well respected 

Reply posted for saleen182.

Hi Chaos,

I was diagnosed w/UC about 15 years ago, though I had symptom before that. Things have been going relatively well, haven't had a flare in over 2 years & was only on Apriso to control my symptoms. I always seem to be fatigued...hard to make it through the day sometimes. Not sure if its from UC or the meds. I had my last colonoscopy a month ago & it showed severe UC. My GI was quite worried & now I am on Entyvio. Resisted this, as its difficult since I dont have symptoms...but the colonoscopy doesn't lie. I've had my bouts w/depression, because of this damn disease. On top of that, I have been diagnosed w/a blood disorder, where my body is producing too many red blood cells. So now I get phlebotomy along w/infusion.

I know my story is not the same as your's....but hang in there...you're not alone.