I am a fellow sufferer of ulcerative colitis. I was diagnosed in my early 20's (I am in my mid 40's now) and have run through the gamut of treatments, symptoms, etc. I finally had my colon removed 9 years ago and have an internal "j" pouch. I would like to offer my advise and help with ANY questions. I'm very open about how this disease can affect your lifestyle and the "personal" issues that are hard to discuss sometimes. Let me know if I can help with any questions!
The following user gives a hug of support to pottamus: JACKSON BROWN (10-12-2011)
Hi there. I lived with it for most of my life and had my colon removed at 36. I has symptoms of colitis, primarily blood in the toilet and my stools, for a long time as a child, but was always afraid to tell my parents. It would go into remission and then come back until finally I had an episode of bleeding, cramping and flare-up so bad I was taken to the hospital and diagnosed at about age 22. I was hospitalized, treated with bowel rest, prednisone, azulfadine (sulfasalazine).
This cycle continued off and on, with my disease going into remission for a year or two and then coming back. Finally when I was in my 30's it became more and more frequent and I was sick all the time, losing a job because of it, but still fighting it with different meds. I know there are many more meds available on the market now. I got to the point where I hated taking the prednisone. I really do not like that drug. It helped my disease, but my face would "moon" really bad, it would make me bitchy and I am still paying for the side effects on my joints and bones. I had several fistula incidents which are usually associated with Crohn's. One was really bad when I was about 36. I had surgery to repair the rectal fistula, but the doctor needed to give me an ilieostomy so I did not have any stool going through and the sugical site would heal.
That was when I realized what living with an external bag would be like. Hated every minute of that as well, but the surgery healed finally. However, my colon flared so badly and we couldn't get it under control. I was getting sicker and sicker and finally we decideed to remove the colon. My surgeon and other UC patients always told me I would feel so much better if I did it, but you have to wait until YOU are ready. I finally got so sick I was READY!. My surgeon worked with me on the other surgeries to preserve as much of my anal and short intestine as possible and hooked everything up nicely. It some adjusting, but being able to void "normally" is worth it all. Since I had to have a pouch a couple of times for the surgeries I knew what it would be like to live with one and the J pouch has worked wonderfully.
I am in the bathroom more often and my stools are mostly liquid because the colon is not there to absorb everything. Also, you really have to watch your nutrition and absoption issues. I take a lot of oral supplements and they all have to be either liquid or capsule. There is no longer a colon there to break tablets down and most hard tablets like vitamin B come out the same way they go in. Since you have moderate colitis, and if it is going into remission and you are able to maintain a relatively normal lifestyle you may not be looking at all of this yet, but if you get to a point I hope you have a surgeon who is as caring and skilled as mine was. Sorry I rambled here. Let me know if you have any more questions.
The following user gives a hug of support to pottamus: Gucci (10-11-2011)
Thank you for your reply. When you were in remission did you still bleed? My GI said that there will always be blood but not to worry too much. Thankfully the mucous has stopped since I have been on the salofalk tabs. (6 per day)I have been told to see him in 5 months. My colonoscopy was in May and it was thorough so I am not so worried as I was thinking the worst. I have just ordered VSL3 to see how I go with it, did you try this? It sounds like your symptoms started very young, how old were you? I know what you mean, it was a hard thing to talk about to family. When you were diagnosed did you go on meds straight away? What is a fistula incident?
When I was in remission I DID NOT still bleed, and if you are still bleeding then you are NOT in remission because that means your colon is still very inflammed. In my opinion that was not correct information from your doctor. It has been almost 10 years since I have had to take any medication for my UC, and I am not familiar with VSL3. I see it is a prescribed probiotic. I do currently take probiotics, however, as patient's with UC, with and without their colons, have absorption issues and it is very important to keep the flora in your intestines balanced for your health and immune system. I hope your cramping/pain issues are not too severe and that you are eating well. With the bleeding and lack of nutrition one can become severely anemic in just a short time. I became so anemic about 2 years prior to my colectomy that I had to have a blood transfusion. My symptoms manifested at a very young age, 10 or 12 years of age? I was diganosed at 21 and was put in the hospital, on complete bowel rest (no food or anything orally) as well as prednisone and azulfadine, when I became very ill. Had the total colectomy at age 36. I did have to stay on medications until I went into remission, and once I stopped bleeding and felt better I could go off meds for a while. As I got older the flare-ups became more frequent, the medications more consistent and my lifestyle was compromised.
A fistula is when a "tunnel" forms in your body and an opening or "tract" occurs where there should not be one. I had a rectal fistula, which was repaired. And a subsequent rectal/vaginal fistula which took 2 surgeries to repair. They were very painful. The rectal/vaginal one caused an opening from my rectum to the vaginal wall and I had stool coming through vaginally. It was AWFUL!! That was difficult to repair and I had to have a temporary ileostomy to help the fistla repair.
Once diagnosed my family was always supportive and my husband has been by my side through all of this for 18 years. I hope you have a good support system. If you are still having bleeding and cramping, and are feeling more and more ill make sure your physician is taking care of you. If you are not happy with your treatment make sure you get a second opinion or another physician. I cannot stress to you enough how important it is to have a good, caring, supportive physician and a good surgeon should the time come. They are out there. Your condition is chronic and you will need help maintaining it to keep a good quality of life!
you have been through a tough time, bless you.
How much probiotic do you take?
I am going to get a second opinion after reading your reply just to make sure I feel i'm doing everything I can. It sure is expensive huh!
I have a beautiful fiancee who is such a help through my ups and downs with this.
I'm glad you have that same support
It is not much blood but if it can all go then that is what I want.
What meds are you on.
I take a chewable acidophilus/bifidum probiotic tablet 3-4 times a day that I get from my local health food store. It does not list a mg or strength per se. I do notice when I am not up on my probiotics, however. As I've mentioned, having a sick or no colon at all leads to very poor absorption and the probiotics help keep everything in check.
Also, I do not need to be on any regular medications for my U.C.since my total colectomy. I do still suffer from periodic joint pain, that would also coincide with when I would have a flare-up, but otherwise nothing.
Prednisone/steroids, while they work to get the inflammation down when you have active U.C., are awful drugs and I hope you don't end up having to take too much of it if/when you have flare-ups.
I'm happy to hear you have good support, and that you are seeking a second opinion. When it comes to your health, especially a chronic condition, finding a good physician is of the utmost importance for your well being and peace of mind. Even with insurance, it would still get expensive for me, but it's better than the alternative. I've gotten so sick in the past I lost two jobs. Now I've worked at home for myself as a medical transcriptionist for the past 15 years.
thanks for your reply, I also am fortunate to work from home as my partner and I have our own business. I will not be going down the path of prednisone/steroids, have heard too many horror stories. I would sooner get an operation. You take care and stay well, big hugs xo