I am from England and live an active life involving many different sports and I get to travel around a bit to different countries through work and personal ambitions. Worried how my life will be determined by UC!!
Up to 6 BM a day. Once I have a soar knee during a ‘flare up’ but I feel its been there on off for years due to my sports involvements..
My Colitis Story:
I want to start off by saying this site is a great platform and I have learned so much from its existence…Well Done to everyone involved. I want to now break my duck and write what I feel is an interesting story, with the hope for some advise and opinions. I can say so much about what has already happened (and yet there is more to come) but I will be direct and informative as I do not want to loose you as I need help.
Could it be in the Genes? Possibly!!!
OK, so when my eldest brother was 16 he was diagnosed with Arthritis. My parents initially took the religious route rather than the medicine route which has now…some 20 years later made him bitter, angry, sad, moody and dismissive of trying new things. Some 7 years later my second eldest brother found blood in his stools, unfortunately he did not do anything about it for more than a year. It got to the stage he was going through the night, during the day constantly 10+ urgent BM. He was diagnosed with UC which had affected his whole Colon. Some 6 years back from today my little sister found blood in her stools. She went through many different tests until they diagnosed her with Mild CD(Crohn’s Disease). She didn’t go through the urgent bathroom visits but was put on Colifoam enema initially but is now on 3x 500mg Pentasa a day. About 2 months or so ago my younger brother had a weekend where he was having 10+ Bloody BM a day with intense cramps. After visiting the hospital and giving him some steroids he went back to find his stools appeared solid so they said nothing was wrong…Hmmm. About a month ago I started going 6 times a day with watery diarrhea and blood. It took two weeks dealing with a casual GP before I decided to take action and book in to see a specialist. In between seeing him and my last pointless meeting with my GP I went to A&E where they took biopsies and found inflammation in part of my colon (not a full colonoscopy was achieved). Fast forward to this week and visiting the specialist we had the results from the biopsies suggesting Active Ulcerative Colitis. I was keen to get a full colonoscopy done but the specialist suggested to get me on meds to bring down the inflammation.
He has got me on 50mg Prednisone, 3 x 800mg Asocol, 2 x Colifoam Enema a day.
My first question is, is this an extreme dosage for me?
It is hard for me to determine where I sit on the scale of UC, or even if this matters. My symptoms has been 6 BM a day. No pain, no cramps, no extreme weight loss, no fever or urgency (although maybe once or twice but generally eat but not have to go). In-fact apart from an increased number of Bowel Movements, there has not been a change to my lifestyle. I think, and could be completely off here, but the more the colon is inflamed the more the cramps or pains occur? If so does this mean mine is not as inflamed? So confused…
I am on the program of meds which was prescribed, it’s been about 3 days and so far the routine of it works with my current lifestyle situation but it is starting to get annoying. I have a Trade show coming up (will be staying in a hotel) and my girlfriend wants me to come back to her parents soon for a long weekend. I know the current med program is short term but my concerns (which I have not overly dwelled on so far in this) are dealing with this long term. I have been able to speak to my brother (who now lived in Canada and at the time of his symptoms I wasn’t around but he is now on IV drip every 8 weeks) which has been helpful. Both him and my sister (both at the complete different ends of the UC spectrum) advise me I can go on to live a normal life without this disease really presenting its ugly head. I know from reading past posts many would argue this fact.
I am about to turn 30, I am well traveled and planned another big trip to Asia and was going to take the chance to propose to my girlfriend, life appeared to be there for the taking and now it all seems to be up in smoke as I have to re-evaluate my future.
I would be keen to find some help in learning if my symptoms are mild, moderate or serve and if this matters towards dealing with UC? Is my medication program right for me currently? Has anyone had worse symptoms but been on less dosage? I know everyone’s experience is individual and I guess I am only after opinions and experiences please… My concern is long term and if it is not under control and I am in constant ‘flare ups’ than the disease will spread and get worse!! Is this the sentence with having this?
I guess some of the other fears with Colon Cancer, Colon removal or life on medication is something I will only ever find the answer to in time. I am in a state of Fear about this whole new part of what is going to be my life long partner.
Thanks for listening in a time when others around me seem to down play its importance.
Where I’d Like to be in 1 Year:
I will never be able to control the implications of long term medication but my hope is the right diet, natural and medical medicine can give me the life I want. Also I hope I am engaged :-)
50mg Prednisone, 3 x 800mg Asocol, 2 x Colifoam Enema a day.Awaiting the long term Medication proposal
written by: “UC Family Boy”