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Ulcerative Colitis
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Posted 5/15/2009 12:18 AM (GMT 0)

I am so happy to have come across this forum. I have recently been diagnosed with Ulcerative Colitis.  Well Kinda; I had a colonoscopy a couple of weeks ago after my internist referred me to a Gastroenterologist because I have been off work since the last week in February with severe belly pain. And after so many trips to the ER I can’t even count them anymore.  Anyway the GI doc did a colonoscopy and came out of it with pictures showing ugly ulcers in my colon.  He read the pathology report to me and said that I have UC.   He prescribed Asacol 1200mg a day (4 tabs 3 times a day).  I thought I had finally found out what was so wrong with me.  I was relieved actually because if I had a diagnosis, that would mean I would have a treatment.  I went home and started taking the Asacol.  However about 4 days later I was back in the ER with the severe pain again (I’m talking 8-9 pain scale).  It was after this ER visit I went for a follow up visit to the GI doc.  It was then that he told me that he now doesn’t think its UC, “Because, UC doesn’t usually cause this much pain” and he suspects that it is something else.  I forgot to mention he also did the other scope at the same time, the one that they look from the other direction, down my throat to my stomach (which looked fine). I just got home today from the hospital because they ended up keeping me on the last ER visit bed rest and pain control.  I’m at my wits end here.  I don’t think anymore.  My Internal Medicine doctor says that this absolutely is UC and UC with the extent of the ulcers I have definitely CAN cause this much pain. And she wants me to continue taking the Asacol because while in the hospital I did get better.  I can eat now (I have lost nearly 50lbs since February because eating anything would cause the pain to come on like a lion) So can any of you shine any light on this for me? Is the Asacol helping?  And I just possibly have not been on it long enough yet?  I am definitely NOT pain free, but it is better.  I HAVE to get better!  My Son is getting married on the 30th of this month and I am so afraid that I will have a bad flare up and not be able go because I will be in too much pain.  THIS pain HAS to stop. PLEASE HELP ME.  ANY IDEAS with you experience with this?  Has YOUR UC caused any of you this kind of debilitating pain?  JUST A SIDE NOTE; I am a kidney transplant patient, so I cannot go the Steroid route.  PLEASE!  Anyone!  Help?
Posted 5/15/2009 12:20 AM (GMT 0)

Dear Karen,

Please read the detailed post in this forum call FODMAPS.  This will definetly help you.

Regards

Joan

Posted 5/15/2009 12:38 AM (GMT 0)
I was in the same boat in Feb. I had a wedding to go to and I was teetering on the border of a terrible flare. I ended up being better for the wedding - to give you some hope. If you're taking 1200mg of Asacol a day, that is not a lot. It sounds to me like you may be taking 1200mg 3x a day which is a high dose. Did the GI say anything about the location of the inflammation? If it is in the rectum, the Asacol may not be reaching it. Asacol is designed to dissolve at a certain part of your GI tract and it doesn't treat inflammation in the rectum well. You should inquire about rectal meds, either suppositories or enemas. I have never had a lot of pain with my UC other than the awful cramping. I had pain on the toilet, awful pain... and come to think of it, I spent most of my time on the toilet. I have seen a lot of people here complaining of pain so you're not alone in that respect. I think we all suffer from discomfort, cramping and urgency. Do you have urgency, lots of trips to the bathroom, gas, cramping, pass blood/mucus? Did they test your stool? I hope you find some answers soon!
Posted 5/15/2009 12:58 AM (GMT 0)
UC can cause unbearable pain. Frequency and urgency and anemia and dehydration and mineral deficiency etc... usually the pain relief of morphine does the trick. Then the questions...if no steroids, they have to try the rectal meds(quickly I might add), and get you on 6mp(,which takes a long darn time to kick in) , and then I am guessing you are not far from the biologics. Perhaps I am missing dietary changes and testing. When you are in a bad way, there are no easy answers. The colonoscopy should be definitive for either UC or Crohns.. Hopefully you have a good GI in a major league place. Get to a good clinic-doc-hospital. Aggressive treatment is important, and you are on the baby drug. :) I wish it was an easy answer, but it appears you are a tough case, like most of us here.
Hang tough, and read all of the prior post for insights.
K
Posted 5/15/2009 2:09 AM (GMT 0)
I can't thank ALL of you enough for responding to my cry for help so quickly. I am going to reseasrch the diet, and I will be asking my GI guy at my next appointment (Which is actually tomorrow) about all of the suggested medications.
I am so releived to have this place to go to. I have felt so alone in this. Especially with conflicting doctors concerning the pain. I will continue to log on and read more post and more replies to my post. A few years back I endeded up with a ruptured bowel and a colostomy for 9 months. Ots wasnt aalll the doctors or the wonderful nurses that really helped me. It wasnt until I came across a forum like this deaaling with others with colostomys that I REALLY BEGAN to get better. So, again, thank you all for being here.
I will post agaain after I see the GI doctor.
Posted 5/15/2009 3:00 AM (GMT 0)
Definitely ask for pain meds if it's that bad. In addition, prednisone is very useful in getting flares under control. Asacol is better for maintenance once it's on a manageable level.

Also, low residue diets tend to help a lot while a flare is active. Google it and it should give you a food list. And if your doc hasn't told you this already, you may want to cut out dairy.
Posted 5/15/2009 4:37 AM (GMT 0)
My Internist hass been very generous about pain medications, especially sincce this all started. So thank you for the fact that ssome agrees that I do need paain medicines. I needed to hear that becuase of the GI doc telling me that UC is not thiss painful.
I will also Google a low residue diet. and NO, I wass not told to stay away from Dairy. That is great information especiallly for me! Better late then never.
Posted 5/15/2009 11:47 AM (GMT 0)
I have heard so many stories here on HW over the years and I would say about 3/4 of the people here have had some pain with their Uc at one time or another. And yes even that debilitating type of pain. I am one that have had horrible bouts of painful episodes. But once I got my Uc under control the pain lessened. Just be careful with narcotic pain relievers. It can slow your colon down too much and make it sluggish. But if you are in pain sometimes you have to make that sacrifice.

Definately ask about rectal meds. Uc starts from the rectum and moves upward. Asacol is designed to work from the top of the colon down to the rectum and sometimes people don't have the right PH level in their colons to properly breakdown the Asacol where the medication can be dispersed to the rectum. That is where rectal meds come in. Rowasa is basically Asacol in liquid form. It is also called mesalamine enemas (generic name). I suggest you learn everything you can about this by using our resource section here on HW or go to www.ccfa.org
Posted 5/15/2009 8:51 PM (GMT 0)
Thanks Sherry--- I was beginning to think I was crazy especially when it's your own doctor that tells you.... "I'm not sure that this is UC, because UC doesn't cause this kind of pain".
I NEED this diagnosis, not because I want UC, GAWD No, this is the last thing I would want. I have enough health problems. But I need this to be UC so at least they can treat me. Because I can’t keep going like this. I have suffered so much the last three months. a 50 lb weight loss, such severe pain that has caused me to not being able to work since March 5th. I have to get back to a normal life. I'm finally feeling better after being on Asacol for about 12 days now. The pain is not completely gone--but It sure is manageable now.
Posted 5/16/2009 4:16 AM (GMT 0)
Wow, Karen. Your doctors sound incompetent. You might want to look for a new GI.
Posted 5/16/2009 4:31 AM (GMT 0)
Trust me. Its being considered as we speak. I just started seeing him. I was only refered to him a few weeks ago---I thought he was going to be okay becuase he got right in and did aa colonostoopy right away (threee days later and he found Uclers everywhere. Ecpecially at the top of the large intestine and towards the rectum...and some others though out. But then it took him another week and an office visit with me crying in pain to perscriibe Asacol. I actuaally put a call into his office today and left a message about adding another medication for this UC (becuase looking at this forum, I havent seen ONE person who is on Asacol only. It looks like everyone else is on two and sometimes three other meds. So we'll see what he says come Monday.
Posted 5/16/2009 5:49 AM (GMT 0)
I hope you find another GI...you should also have been put on rectal meds if he found disease activity in your rectom (proctitis), some patients are only on one kind of oral med though, that's not really too unusual, but definitely when the rectom is showing signs of disease the rectal meds are also in order.

Good luck :)
Posted 5/16/2009 2:37 PM (GMT 0)
Thanks for your reply
I am so happy to report that for two days un a row- I have been pain free! After all the agony I have been in for a solid two months, laying in bed and moaning in pain for days on in, seems like just might be behind me. I think the Asacol finally has started working (I've been on it for about 15 days now). This has been such a horrible road. I have had many other health issues, but none that has kept me from working for 3 months. AND I have had a kidney transplant, a ruptured bowel, and a colostomy. But this took me down harder than anything I have ever been through. I finally feel like I have turned a corner. I can’t Praise God enough. And the most important thing is that it looks like I will be able to be at my Sons wedding on the 30th! I will get to have my Mother and Son dance with him! We really didn’t know if I was going to be able to be there. But I actually am going to go shopping for my dress today.
I know one thing for sure, I am so thankful that I came across this forum. Being able to talk to all of you has helped me so much. I don’t feel like I'm as confused by this, and when I do get scared, or don’t know what to do, I have all of you to go to, not just doctors and nurses. Especially MY GI doc who kept telling me that "UC is not this painful". It was in this forum that I got to find out that YES, for some UC sufferers, THIS CAN BE and is very painful.
Happy Saturday Everyone. Now I'm going to go take my Asacol, and my pain meds and GO SHOPPING! (I still can't believe I'm even speaking those words! Go Shopping...WOW
Posted 5/16/2009 4:57 PM (GMT 0)
Glad you're feeling better, I hope you have fun at the wedding (I've got one to go to myself soon, boyfriend's best friend is getting married XD). Also, glad we could be of help.

And inflammation can DEFINITELY be that painful. I was rushed to the ER with pelvic inflammation a few years back and it was the worst pain I've ever been in. Your doctor is an idiot.
Posted 5/17/2009 1:06 AM (GMT 0)
I don't know about others, I have a form of colitis and it was very painful for me. I also have IBS and have experienced pain so bad I had to get a shot of demerol or take loritab to get some sleep. I thought the meds would work immediately too and it took weeks for me to get back to some form of a normal life. While I have a very good doc, they didn't tell me that the healing was going to take a long time and to stay on a low residue diet, soups crackers... I had to learn that by trial and error, I am sorry to say. It is 4 months out and I still can't eat pizza, lots of uncooked veggies or salads. It may be partially due to the IBS or diverticula. I do think the colitis pain has subsided and I no longer have joint pain, which is awesome. Good luck to you and yes, this is a really great forum. Lots of good folks here who give a lot of great support.
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