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In the hospital... Docs keep bringing up surgery...

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Ulcerative Colitis
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Posted 4/30/2010 1:28 PM (GMT 0)
So I was diagnosed about 2 months ago with UC throughout my entire colon... I was in school at OSU so I went to the University Hospital ER, they told me I needed a colonoscopy so they made an appt. with a GI and I had it done. I was prescribed with cipro, flagyl, and apriso right off the bat.... no results so he gave me Entocort. Eventually ordered blood work to start 6-MP, but his office messed up the forms, I had the blood test done 2 1/2 weeks ago.. and they don't have the results yet.

So months after still nothing but I feel like s--t every day. I havent had a solid bowel movement since before the colonoscopy and I have symptoms of blood loss... so I calll the GI... he's not worried about it at all.. says I can come in and get my blood pressure measured.

My mom started to get really worried and told me I needed to go to the Hospital. So we drove to Cleveland and I'm currently hospitalized at the Cleveland Clinic. I was given 2 pints of blood, my hemoglobin was 7.5. Before getting the blood my resting heart rate while sitting down was at 140!

So the docs here are giving my steroids... starting yesterday... no blood yesterday.... but this morning there was quite a bit. After talking to the docs this morning they said that they were not giving me the right type of steroids yet...not really sure what he meant by that.

Since I've gotten here they've mentioned surgery several times, which scares the hell out of me but I do see some benefits, such as no UC and the risk of colon cancer is gone. They also mentioned Remicide. Just wondering if anyone has any advice for me, I know I'm at the best place I can be with the Cleveland Clinic so whatever happens it will hopefully be for the best.

Thanks
Posted 4/30/2010 1:38 PM (GMT 0)
Well, you couldn't be at a better hospital for having UC! It seems you are having a flare that does not respond to medication. Certainly Remicade is an option; it might buy you some time before having to make the surgery decision.

I had jpouch surgery 9 years ago after failing all drug therapies and living in a 2 year flare. I am very happy to be UC-free and med-free. Surgery is not a walk in the park but it has been a cure for me. I can also tell you that coming to the point of making the decision is not easy. Only you can decide what is best for you in consultation with your medical team.

Sue
Posted 4/30/2010 1:58 PM (GMT 0)
Well the meds they gave you obviously aren't working, not talking the steriods, but the Asacol or whatever. I hope they let you try something else. Surgery should be a last option, as you are losing part of your body forever and it may or may not turn out as you hoped. Hard to watch you diet in a hospital, but that can help if you know what makes you worse or better.
Posted 4/30/2010 2:32 PM (GMT 0)
I think it's crazy that after only 2 months people are mentioning surgery. You must be really sick. I am sorry. I hope you can get this under control with medication. It's frustrating because you just need it under control and maybe you will have a long remission and won't have to contemplate surgery for a very long time. It just seems like it's never going to stop when you're stuck in a bad flare. Try to do things to reduce your stress levels. Read a book or try to do some kind of breathing exercises that keep your mind off being scared.

Posted 4/30/2010 2:37 PM (GMT 0)
Surgery at 2 months is not that uncommon. I have met others who only had UC for 2-3 weeks before having surgery. Some cases are just resistant to treatment and when the patient's life is on the line, surgery can be the only option.

Sue
Posted 4/30/2010 2:42 PM (GMT 0)
Entocort doesn't really seem to do much for most UC people. If they put you on prednisone, even a really high dose will take a little time to stop serious bleeding. So, really you won't know if it's going to help yet. If you are not ready to go the surgery route, then try some of the drug options. If steroids kill the flare you can try Imuran/6-mp or/and 5 ASA's for remission. You can also try Remicade, Humira. Your case sounds severe but you still have things you can try before surgery. I hope you feel better soon!
Posted 4/30/2010 2:51 PM (GMT 0)
Matt,

You are at one of the best hospitals for IBD - so that is a good start. As for the steroids, the first time I was diagnosed the steroids took about a week to work, but they worked. So give it a few more days and hopefully they will start working. I am at the hospital too and the surgeon was here the next day I got admitted. So, that could be somewhat of a standard procedure.

Be patient, from what I have been reading the steroids usually work the first time for most people.

Good luck
Posted 4/30/2010 2:56 PM (GMT 0)
I hope you get more time to decide on surgery - but as Sue said some peoples case is so serious that that is the best option.

I got my surgery after a 3.5 year flare - after becoming unable to work - after suffering long term blood loss and its effects - and like you I had a constant high pulse, which towards the end sometimes got up to 170-180 and I had to rush to ER, ect.

For me the time I had it was a nightmare, but I know without a doubt that I needed surgery at the end.

I would trust what they tell you at the Cleavland Clinic - I gather they are the experts at this.

Read as much as you can about all the available drugs, including Remicade and surgery so that you can weigh up your options.

I hope you get a chance to put this in remission first and get time to think.

I choose surgery over Remicade - but then it was contraindicated for me due to neurological problems and I know some people have excellent results on it, and many people try it before surgery.

If you need the surgery - I have just been through it and can tell you that although its tough - it has changed my life for the better and I would do it again in a second.

Good luck to you whatever you decide :)
Posted 4/30/2010 3:07 PM (GMT 0)
Hi Matt

I was a 7.8 hemoglobin like you. Had to go into hospital for transfusion but they didn't keep me. Boy did I ever feel better after getting more blood, was so run down before I couldn't even do housework without taking frequent sit-downs.

Entocort did work for me to stop my bleeding (which started back when that RX ended) but I never tried Remicade. I am a person who would have tried every possible RX before considering surgery. I got lucky.

Who is suggesting surgery? The surgeon on staff?
What I have found is that the proposed treatment depends on which professional is talking at the time.
My GI doctor never proposed surgery because she wanted me to try every possible RX before considering surgery.
Of course if thought she was wrong I would have scheduled an appointment to talk to a surgeon.

Mark Twain said "To a man with a hammer everything looks like a nail."

It's your colon and your life, not your doctors and not your parents. Listen to everything and make your decision yourself.

Good luck.
Posted 4/30/2010 3:36 PM (GMT 0)
Hi Matt,
I'm sorry that you're in this situation. When my daughter was diagnosed last summer, we were told there was a pretty good chance she'd need surgery at the time. We were told that about 15% of children who present with UC have to have surgery at first presentation. In some ways it might be a blessing, as life without UC (and a colon) would mean no further flares etc. I think psychologically, though, it would be so much harder being healthy one day and then having lost your colon and having surgeries, ostomies etc to heal with the next. I think people who are sick for a while and who make the decision to have surgery because they have lived and suffered with the disease probably fare better as they see every step as an improvement. If you have to have surgery I hope you have a lot of support from family, friends and a very good psychiatrist who specializes in medical trauma. While you're at CC can you ask them to arrange that for you?
Best of luck.
Posted 4/30/2010 4:07 PM (GMT 0)
Thanks for the advice everyone,

I have not seen a surgeon here, but there is GI doc that is taking care of me here who mentioned it as a possibility. He said that my entire colon is inflammed pretty bad, but I dont have pain. I do have some pretty nasty bowl movements though.

But as far as surgery goes, while its scary i know it may be the best option, and I'm only 20 so I should heal well. I was searching on google and this came up.

http://my.clevelandclinic.org/services/total_abdominal_colectomy/hic_total_abdominal_colectomy_basic_surgical_steps.aspx


Anyone have any knowledge on it?

Planning on doing some more research on Remicide, they mentioned that also. But if I'm only putting off the inevitable maybe surgery isn't a bad option now.
Posted 4/30/2010 4:46 PM (GMT 0)
Well - normally it is a 2 stage proceedure although some have had it in 1 and others in 3 stages.

They remove your entire colon and rectum (apart from a couple of cms). They then build a JPouch from the end of your small bowel that acts as a reservoir. It is not as big as a colon - therefore you have to go to the bathroom more often than with a normal colon and do not absorb as much water - so you need to forever be careful about dehydration. In my 2 stage surgery they then made a temporary ileostomy - where your stool comes out an opening in your abdomen and into an external pouch. Its not as bad as I thought it would be. In hospital for 11 days - but I had complications (tachycardia and needed blood transfusions).

After 3 months - normally - you have 'takedown' surgery. This is normally much less dramatic than the first operation. Was in hospital only 5 days.

For most there is an adjustment period after - this is what I am in right now. I am going very often and have pain 'down there' due to the very acidic nature of what comes out. I am learning to control this with diet and medication - although the medication is much less damaging than what you would take for colitis!

Check this out - including the stories and message boards:
http://www.j-pouch.org/

Check out the "our stories and photos" sections here - gives you a fair idea of what its like.
http://www.jpouch.net/

Its your decision - but you need to really know your stuff! Good luck!
Posted 4/30/2010 4:47 PM (GMT 0)
Take a look through the Ostomies section here on Healing well. Also, take a look at j-pouch.org.
Posted 4/30/2010 6:11 PM (GMT 0)
I had a very serious flare when I was first diagnosed. My whole colon was affected. I was bleeding bloody liquid out my butt. My GI said my colon felt like dog meat when he did an external examination. I was put on steroids, which worked at first and then stopped working. I then did fecal transplantation, which put me into remission immediately.

Unfortunately, fecal transplantation is an alternative treatment. I doubt anyone at the hospital will recommend alternative treatments. However, it would be a shame to get surgery after having a flareup for only two months, especially if no one else in your family has UC. There could be some sort of alternative treatment that will help you. The only way to know for sure is to have time to try some of them out.

I'm not sure how the hospital messed up and gave you the wrong type of steroid. When it's an oral steroid that's given, I've only heard of it being prednisone. Sounds like someone at the hospital did not know what he/she was doing.
Posted 4/30/2010 8:23 PM (GMT 0)
You are really lucky to be in the hospital that you are. If I had to choose three hospitals to end up in, Cleveland clinic would be one of them and I wouldn't be able to choose between my three(John Hopkins and Mayo Rochester would be the others).

I wouldn't rule out that the doctors aren't discussing surgery with you just to prepare you for the possibility. Having surgery thrust upon me at the last minute when things were very bad would definitely not be the best thing for me personally.

I would definitely look into reporting your original doctor to the medical board. It really seems that he put your life in danger. Worry about that later though.
Posted 5/2/2010 11:00 AM (GMT 0)
When you are on IV steroids in hospital they normally give hydrocortisone, and then when you begin to respond they swap you onto oral pred. to continue with and then wean down the steroids.

When my daughter was hospitalised her Hb was 6.6 and she took 10 days to get any response to the hydrocortisone. Your body has been dragged down by blood and nutrient loss and healing will take time. My girl has not had a trouble free journey to first remission but although surgery may seem to give you more control over your situation, once done that is fixed for life - no matter what new treatments or discoveries about UC are made. There are also some occasional complications to surgery that need to be considered.
It can seem overwhelming with the range of severities and relapse/remissions that people here experience, and it may seem easier to just accept surgery and get on with it, but even though the first few weeks/months around diagnosis are hard they then may be followed by very settled times.
UC seems to be a disease of "What ifs?" and "If only I had tried/not done x". Assuming your UC is not immediately life threatening, in the end it has to your choice and your approach to life that will say if surgery should be considered at this stage, and then ignore any 20/20 hindsight and try to stay positive.
Wishing you all the best
Sue
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