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How my scope went today

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Ulcerative Colitis
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Posted 1/24/2012 8:31 PM (GMT -5)
So, I had my scope today and it isn't good news.  I now have very bad rectal inflammation.  Mild to Moderate Inflammation and ulcers throughout my whole colon now.  My last scope last Jan. was just mild inflammation on the right side.  I was awake during alot of it and I just knew it wasn't good when i seen the screen.  Ugh!!! So she is going to call me by the end of the week to see if I have an infection.  She said she would put me on 30mg of pred for a month and then taper off.  I gained 50 pounds on that crap when I was on it for five months and I go crazy.  I still haven't lost the weight and I swear I don't need to gain anymore.  She said my remicade levels are fine so it isn't like I need more remicade or the infusions closer together.  She said when the biopsies come back that we will have to talk about my other medication options and that I don't have many left.  I am so upset right now.  Ugh!!!

I told my mom I just don't know what to do anymore.  I still go D about 4-5 times a day.  If I have to go I have urgency but I can still do things with my life and I don't feel I am bad.  But the doctor said I can't leave you on a med that is helping your symptoms but not healing your colon.  You will get colon cancer. 

I also told my mom I am scared to add methotriate and remicade together(which I think she will suggest next) or to go off remicade and do humira(which I might try) or do a trial drug.  The trial drug I am really scared to do.  You are using me as a guine pig and that scares the crap out of me.  I also said to her how long are these drugs going to last and how much damage am I doing to my body.  On the other hand surgery scares me also.  My kids are ages 10,6, and 3 a week or more in a hospital and recovery time at home is almost impossible My mom works and so do most that can help.  My husband can help but not by himself because of work etc.  Ugh!! I am so worried about having problems after surgery.  I also don't want to do all these drugs when I know I will need surgery because I am allergic to all 5 asa's and imuran and I have tried remicade not much left.  So part of me feels like just do it.  I am 32 years old what I keep trying all the different biologics and new drugs that come out and that can give you horrible side effects.  How long will that buy me 2 year or maybe 5 and then what surgery.  I am so young that there is no way I will be on a biologic or new drug for 50 years.  Ugh!! I hate the choices I have to make and they are scarey ones. Sorry for the long post I was just hoping for some good news for a change.

Posted 1/24/2012 8:51 PM (GMT -5)
I am in a similar situation and it's f... up. I got nothing to help you than the usual regurgitation of diet change, that you see prevalent on this forum.

And then you read a post like that dentist "MyUC" and for him UC is nothing. He takes Imuran 100mg and a suppository and it's like he never had UC. That's messed up.

Post Edited (Somedude) : 1/24/2012 6:55:08 PM (GMT-7)

Posted 1/24/2012 8:54 PM (GMT -5)
That's terrible news. Have you considered the triple antibiotic therapy or any of the other alternatives? I don't know what I would do if I were in your shoes. I know what you mean, these biologics do seem like they are just bandaid solutions. How much time would you be buying even if you did find something else that worked for you and what's the damage you're suffering from trying these medications (if any). It's really scary to think about surgery but in the long-term, it could be a blessing in disguise. I see so many people doing well after surgery but the procedure is such a long, difficult one. There are some alternatives and clinical trials that may be worth trying but it's draining trying things and waiting/hoping for a change. I hope you're able to get a handle on the inflammation so you don't have to think about surgery right now.
Posted 1/24/2012 9:00 PM (GMT -5)

notsosicklygirl said...
but the procedure is such a long, difficult one.

The procedure is not that long, If done in 2 steps you could reach take down in 4 months. I read a boat load about on websites, Jpouch.org, on here(ostomies).

I am more scared of complications. If sh... doesn't work properly...ohhhhh man, you're f'ed for life.

People like Suebear and ByeByeUC are lucky people. If you go on Jpouch.org you read scary stories. I know that most surgeries like this are successful and the people complaining on those sites don't represent a majority but man.....You don't want to be in that minority, let me tell you.
Posted 1/24/2012 9:03 PM (GMT -5)
Sorry to hear about your scope. Have you ever considered or tried fecal transplant?
Posted 1/24/2012 10:17 PM (GMT -5)
I haven't really tried any alternative treatments and maybe it is time I start looking into them. 

Somedude-that is really what I am worried about also.  I don't want to get my colon taken out at age 32 and have nothing but problems and it doesn't work and then what?  That is why I am scared of surgery.  I know most are happy and glad they did it but what if something happens.  I don't know that I am ready to live with a bag forever. If I turn down the meds and I have problems from the surgery I am going to be mad I didn't try the meds.  At least if the decision was made for me I wouldn't beat myself up if something happened. 

Posted 1/24/2012 10:27 PM (GMT -5)
If you are considering FTs and home you should get the ball rolling by testing and finding a doner so that you are ready to go if you decide to proceed. It takes a few weeks to get the doner test results.
Posted 1/24/2012 10:33 PM (GMT -5)
So are you using rectal meds? Are you not able to use mesalamine for some reason?? That would be the best way to treat rectal inflammation, hands down. I'm sorry the remicade doesn't seem to be working - I think I read here last week that for some reason it doesn't seem to help UC folks as much as Crohn's.
Posted 1/25/2012 8:08 AM (GMT -5)

i am so sorry you are going through this ***hug****

i have mild to mod throughtout my whole colon in patches.  the rowasa enemas seems to help the lower end, and 4 lialda and the recent addition on entocorrt seem to be helping the right side.

for the past 3 years i have had off and on flares and it was just recently with the addition of entocort i notices a difference

is it too late to try entocort or to ask your dr about it?

Posted 1/25/2012 8:13 AM (GMT -5)
I'm sorry. As kazbern mentioned, are you able to use mesalamine? My current and previous GIs still have me take mesalamine while on Remicade. And the rectum is always the hardest heal--definitely try rectal meds (maybe alternate between steroid and mesalamine).

If I were in your shoes, I'd try Humira. Or those worm eggs (but they're super expensive). What's the trial drug?
Posted 1/25/2012 8:25 AM (GMT -5)
Oh I am so sorry this is happening to you. I don't know what I would do in your shoes either. I think I would try to buy myself more time until the kids were a little older and then if you had surgery they would be a little more self sufficient if you know what I mean. My daughter is 4 and I can't imagine trying to have surgery at this point. I also know what you mean about not having help. I haven't had help from my family in any way over the years. We don't live by any of our family. Its very hard to do and sure doesn't help the stress level. Take a deep breath and give yourself some time to think about all your options at this point. Nothing needs to be decided today.
Posted 1/25/2012 9:41 AM (GMT -5)
I am allergic to all 5 asa's so that is why I am not on any and I am allergic to Imuran.  My rectum was not inflammed at all last time.  I will ask her about rectal meds when I see her but what else is there if I am allergic to mesalmine? My mom and dad are awesome and are a great help but my mom is a nurse and she has already asked if she could take a leave of absentice if I need surgery and since I am grown I don't count so she would have to take off and you can't just take off for two to three weeks.  She works two jobs one is a pool position so she wouldn't schedule herself there but she still works three 12 hour shifts a week and they are the night shift so she needs to sleep. My husband is home some of the time and would help but he also needs to work.  He could take off for alittle but not two to three weeks.  The two boys are an okay age if I needed surgery but my three year old isn't.  She will be four in june.  I was hoping to get a few more years until she was in school full time. 

I would try humira but I know she is going to suggest methotraxate with my remicade and I just don't know how I feel about this.  I am not crazy about being on another immunosuppressent.  She said it would be a low dose but still. 

The trial durg was the MLN-0002(not sure if i have the spelling right, I know it starts with a V) She had wanted me to try this about two years ago so I don't know if the trial is even going on anymore.  I really don't think I will do this because of the PML risk.  I also don't like using myself as a guine pig with these scary drugs. 

I also don't want to be on pred because I DON'T need to gain anymore weight and I went crazy last time.  My husband was like oh know the crazy drug. lol It was so funny.  Even my mom was like oh God I feel sorry for you(my husband). lol He is a good sport about it but man I go off about everything. lol

Posted 1/25/2012 10:24 AM (GMT -5)
If you can't tolerate 5-ASAs then I guess the only rectal med might be a steroid enema. I think there are also balsalazide enemas (colazel) but I don't know if your allergy to mesalamine would extend to that. Worth discussing with your DR!
Posted 1/25/2012 10:38 AM (GMT -5)
I would definitely experiment with antibiotics. Either the triple combined therapy or flagyl. Our GI is a big believer in this. Also, try LDN and if you're up to it, FT. You never know?
Posted 1/25/2012 11:06 AM (GMT -5)

Sad to hear your struggle. Hopefully you can reverse the current extent of the UC with steroid treatments for severe UC - or something. Hopefully, they will find an infection, or some diet change will be a magic key.

Perhaps an alternative therapy will help (but find out about the infection 1st). Maybe LDN. It is hard to know.

You will have to decided if things are so bad you need to go the surgical route. Ultimately, only you decide.  You might find this account informative and reassuring: http://ucstory.wordpress.com/about/

I would not worry about being on "biologics for 50 years" - there are several things in the pipeline just a few years away. So you only need to keep your colon long enough for new meds to come along. I took encouragement from the thread here on this board about research on genetic modifications to a probiotic strain to increase its anti-inflammatory effects and reduce any proinflammatory effects. I also found encouragement in the potential of MULTISTEM, a stem-cell based therapy that might actually cure UC by replacing parts of our immune system. It is currently in phase II trials.

The Chrons and Colitis foundation is raising awareness, the medical community is increasingly looking at IBD, and many supplements and alternatives are slowly getting clinical examination - weeding out the wishful from the useful.

I know it sucks now. Last year when I had pancolitis and was only half this bad, I was scared crapless (I wish). Now I have jsut left-sided UC and rectal meds (including hydrocortisone) have made my life a lot more comfortable by eliminating urgency and some bleeding.

I wish you the best.

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