I have been given IV steroids for a week in hospital and been discharged. This was my second time in hospital in the past year for a flare-up. However, this time the steroids have not worked as effectively and since I've been discharged I continue to bleed rectally with loose bloody diarrhoea. I've been started on Imuran (azathioprine) but on a very low dose (25mg per day as opposed to 150) as one of my enzyme counts is very low (20 instead of the desired 35 - TPMT I think). I think they are also going to start me on Humira but this may take a few weeks to be approved given the cost.
I still bleed a lot rectally, especially in the morning and would often go 3 - 4 times within an hour of getting up. I'm just wondering if this is normal - I only got diagnosed about 1 year ago. Asacol does not work for me and brought me out in eczema.
Would be good to hear from anyone who may be experiencing anything similar at all. I understand the drugs take time; do I just put up with this!? Have you had food allergy testing? A small percent of u.c patients have significant food allergies.
Also, you may be becoming anemic with all of that blood loss. A trip to the ER might help with that, and also more quickly get your meds approved. You may need an iron supplement. here are two web sites to start with...the first educational and the second chat groups that will provide you better information.. hang in there.... a good gastrenterologist will help you keep it in check....daughter has Chrohns
http://digestive.niddk.nih.gov/ddiseases...
http://groups.yahoo.com/search?query=ulc... Ulcerative colitis is a rheumatic disease which should be treated with antibiotics and antiinflammatory medications like Flagyl.
Rheumatic diseases are the result of a defective gene and collagen inflammation, often from a chronic infection. Collagen is present throughout the body, from the eyes, skin and joints to the heart. Hence, the multiplicity of symptoms, depending on the location of the most affected internal organs or body parts.
I have had seronegative rheumatoid arthritis for more than 27 years. The telling signs of seronegative rheumatoid arthritis are the following:
- Joint pain in the feet (or cracking ankles) in the early 20's or late teens;
- Fatigue, especially after a moderate exercise like a 30 minute walk;
- Blood test showing a negative or low level of Rheumatoid Factor (RF);
- Joint deformities of the fingers, after a few years, a specific sign of rheumatoid arthritis;
- Consecutive X-Rays, over several years, showing bone erosion, a consequence of rheumatoid arthritis;
- Generalized arthritis, involving the whole body;
- Blood tests showing elevated levels of C-Reactive Protein (CRP) and Sedimentation rate (ESR).
NSAIDs like Voltaren, COX-2 inhibitors like Celebrex, acetaminophen like Tylenol, and codeine are all used to control inflammation and relieve the pain of arthritis.
Regular exercise like walking, biking and swimming is also helpful for most patients. Make sure that you are not overweight as carrying too much weight can only increase the pain of arthritis in the supporting joints of the hips, knees, ankles and feet.
You should consult a Gastroenterologist working in a university teaching hospital who will order blood tests, scans and X-Rays to confirm his diagnosis.
The American College of Gastroenterology at http://www.acg.gi.org maintains a web search tool to help you find the address and phone number of its members. You can find Gastroenterologists by family name, City or State, inside the USA and Canada. The physician locator of the ACG is found at:
http://www.acg.gi.org/patients/phylocato...
A wealth of information is also available for patients at:
http://www.acg.gi.org/patients
Lyme disease is sometimes involved with other forms of rheumatic diseases. Ask your doctor to test you for the bacteria causing Lyme disease.
Are there any other cases of ulcerative colitis, arthritis or rheumatic diseases among your relatives? Ulcerative colitis and chronic forms of arthritis are usually prevalent in families where a defective gene is passed on by parents to their children.
There are a few hundred types of arthritis and rheumatic diseases. The good news is that science is progressing rapidly in its understanding of rheumatic diseases.
Antibiotics are now used to achieve full remissions for at least 40%, if not 65% of patients with rheumatoid arthritis. The same could be done for patients with ulcerative colitis, the objective being to substitute antibiotics and Flagyl for the immunosuppressive drugs like Enbrel and Humira prescribed to some patients. For more info, please join the antibio group at:
http://health.groups.yahoo.com/group/ant... I was diagnosed with U.C. 10 years ago. When you were discharged, were you still on prednisone & started on Imuran? When I was hospitalized 8 years ago, I was on 60 mg. of prednisone and started on 100 mg. of Imuran. A word of advice, DO NOT STOP TAKING IMURAN ONCE YOU START IT. If anything they would put you on Remicade next. Not to scare you, but if all of this doesn't work, they may tell you that you need surgery. I had the surgery almost 7 years ago and I can say that I'm able to enjoy my life more now, then when I had U.C. If you need more info. you can e-mail me with any questions that you have or go to www.ccfa.org. P. S. YOU ARE NOT ALONE. Hi!
My husband was diagnosed about two years ago with Colitis. He got to the point of having projectile diarhea, and most of the time it was nothing but a lot of blood and mucus. This got so bad that he was going every hour or so, and all over himself and everything else. We finally had to go see a specialist (surgeon) because his normal GI doctor was busy and couldnt get him in fast enough. He was taking Asacol like you, and it was doing nothing. I also have Colitis and Asacol has not helped me in the least bit. I have even tried suppositories, and nothing! After we saw the new specialist, he put him on a super strong months dose of steriods, and a new medication for Colitis called Colazal. That medication worked wonders. He wasnt bleeding any more, his stools looked normal again, he got a lot of his energy back again, and feels a lot better. However, he stopped taking it a couple weeks back and it started up again. So he had to start back taking it. I dont know if your doctor has suggested this medication, and am sure that not all medications help people the same, but it really helped him. I am going thru some of the same things, but I dont have the blood as so many others do. Good luck with getting better.
We also started a group on Yahoo groups recently too, where I am hoping that so many other sufferers will join. Hope to see you there. Its called COLITIS_HURTS I have had UC for 2 years now and have only had limited success with treatment. If you have good health coverage you can try remicade. It is a synthetic protein that blocks the signals in your brain that tell it to attack your body. It is expensive, but it works. They administer it by infusing it into your blood via I.V. over the course of two to three hours. I know it's hard having reoccuring symptoms but if your gastro guy can't help you, seek another. Steroids are your best friend right now. It takes about a week or two to take effect but they will save your life. I hope you feel better soon. |
