Question -------------------------
Followup To
Question -
Hey I am not sure if I am doing this right in terms of the follow up thing, but I am hoping that this gets sent to you. First of all thanks so much for your help, and time I really appreciate it. In terms of syptoms I haven't had any throwing up, thank goodness, but I have had the overall sick feeling. It is hard for me to tell for sure whether or not I am in a flare because I am so new to this. I have blood in stool here and there every so often, but it comes and goes with serverity. I almost always have a little bit of mucous with a little bit of blood with it, but not always intense visible blood, with the exception of two weeks ago. I have weird stomach pains, and although they are relatively better in comparison to the winter, they can still get pretty bad. When I have them they are usually right under my ribs in the center or sharp in the left side. Sometimes they spread to the middle and the right side, but not as often.I have tried the sleeping with pillow thing when I would wake up in the middle of the night in pain, and it did seem to help. The pain is so unbearable I just squirm and feel weak and gross. You may be thinking that the left side pain could be because of a spleen or gall bladder problem, but fortunately I had both of those removed when I was six so there is no chance.
In terms of how efficient my doctor is, I think he is good, but I haven't had anyone else to compare him with. He is very nice, but for the most part my appointments seem to go so fast, and I never feel like I have enough time to ask him everything. At the beginning of the year I was originally on 6 Asacol and 3 Iron, but I didnt know if I was on enough Asacol because he would ask me if i thought I was, and to up it if needed, but I had no idea. So I know that I need to be on like 8 or 9 Asacol a day, but I'm not. I just started 150mg of Imuran about 6-7 weeks ago so with this medication I am still at the begininng of treatment. It isnt giving me any bad side effects becauase I am very consistent with my meds, and always take them with food. I am just frusterated because I haven't not had diarriah and frequent stomach pains since atleast last summer, which almost makes it a year. It is hard because I am so unpredictable. One day I can feel great and the next day I can be in the restroom all morning and feeling very crummy. I just never know whether or not I am flaring or whether or not it is just me, and that is how life unfortunately will be for me with this disease. A few appts ago my GI said the treatment after Imuran was Remicade but he didn't seem like he thought I would need to do it. He is sure that the Imuran will work long term. When I called about the bleeding he seemed concerned but not that worried. I was worried that I was losing to much blood because along with the excessive dark bleeding I was also on my period.He said to watch it and if it persisted to call back because they could try Entocort or something else like that. I talked to my family friend that is an ER nurse and she told me if I would have called she would have sent me down. Looking back I know that I should have gone because I am so anemic anyways and having spherocytosis, and bleeding isn't healthy. Well I don't know much else to type other than thanks again, and I hope to hear from you soon.
Jane
PS I am from Oregon, what about you...if you can give that info.
Sorry this is so long!
Answer Hi Jane,
Would it be okay if I reply this evening? I am also in the middle of an attack and can't stand up! Sorry. Sounds like the doc is a good one though. I am from Florida.
Will email you as soon as I get over this one.
Odette
Hi Jane,
Back...Tell your doc that you want the remicade. It is wonderful and if given as it should be, you will start to heal and if they give you a 6mp then the life span of the remicade lasts much longer. If treated correctly, you will live a perfectly normal life if you listen to the doctor and take the medications prescribed. I am surprised that you are not on Flagyl for the inflammation. That helps. Once you are regulated, you will have more good days than bad, I promise. You are going through a horrible time right now because they have not found the "proper" dosages of what you should have. Please keep on top of your doctor, you are not imagining this, it is quit real. It took about a year for my doctor to find what worked and didn't work for me. Once I got the Remicade, it made all the difference in the world.
I hope that you have been told what to eat and what not to eat. If not, please email me again and I can help you out with that.
Keep your chin up and don't let this get to you. You will be okay in time...wait and see! And don't apologize for the long email...I am here to help as much as I can!!!
