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Posted 9/22/2016 5:06 PM (GMT 0)

notsosicklygirl said...
I am happy to hear you're one step closer to finding a solution. I agree 100% on the pill cam. You need some kind of upper bowel series, even if they won't allow for pill cam, perhaps an MRE.

I was wondering how they can diagnose one or the other without checking the small bowel? I was under the impression that UC effects the large bowel and rectum where as Crohns can be anywhere. Surely they would need to check both to give a proper answer?

Maybe what I read was wrong, one of the things I should have asked the stoma nurse but it's one of those things you think of after you have spoken to the person :-)

Obviously both illnesses are a nightmare to have but UC opens up a few options as opposed to Crohns which is a little more complicated.


I opted for some sort of gas this time round and remember everything. Was interesting watching the monitor as the camera made it's way through. Was a little surprised by the way they take tissue samples with a small claw device that then needs a good yank to pull the tissue away. Fascinating stuff but I wouldn't want to do it as a job tongue
Posted 9/25/2016 12:04 PM (GMT 0)
Just found out of my friends has UC, he has been on some medication for the last 2 years which has kept it under control, allowed him to travel etc.. he is even talking about going to NZ for 12 months which to me is insane, what he is on really does work for him and I hope it continues.

I have taken the name of the drug and will ask my GI when I see him Wednesday but I have been thinking about a stoma vs drugs. Weighing up the pros and cons. Like a few people mentioned in this thread, I'm not sure I see myself taking medication for the rest of my life.

My friend was saying how he had trouble with his legs for 12 months and what he is on essientally gets rid of the immune system. Plus side it helps his UC, downside he is more likely to catch other illnesses, colds etc..

I'm not saying a stoma doesn't have it's cons but it does seem like the better option.

Maybe I'm overthinking it?
Just trying to get as much information as possible so I can make the best decision.
Posted 9/25/2016 1:23 PM (GMT 0)
It sounds like your friend is on one of the immunosuppressant drugs. It's not so much an increased risk of colds or the flu but more serious infections such as UTIs and pneumonia for which patients on immunosuppressants need to be aware. Leukemia, skin cancer, liver issues, joint pain, hair loss etc can also be side effects. Of course, you may or may not get side effects. Similarly, it comes down to weighing up the risks and benefits when it comes to surgery.

If you have not already seen it, there is a recent thread on the "Ulcerative Colitis" forum focused on "What are the reasons not to have surgery?". You might find the responses helpful.

I have also posted below a link to an interview transcript with a UCLA colorectal surgeon, discussing when is the right time to have surgery. The traditional approach is to exhaust all medical options before surgery. But is this the best time to have surgery? Is this the healthiest option? The interview addresses these types of questions and others:

http://www.everydayhealth.com/colitis/webcasts/colitis-and-surgery-why-you-shouldnt-wait-too-long.aspx

Apart from the aspect of physical health, there is also the consideration of psychological health. One significant reason I elected to have surgery rather than spend years trying all the different medications was I found it psychologically overwhelming and exhausting knowing that (even in remission) UC lurked in the background. And I did not see me living comfortably in the long term with daily obsessive worries about how many times I have a BM, whether it's soft or formed, whether there will be blood or not. Three months post-op, now the pain is gone and everything is functioning well, my mind is filled with the enjoyable little things in life rather than consumed by the concerns of UC that once controlled my life.

Post Edited (GC4249) : 9/25/2016 7:31:24 AM (GMT-6)

Posted 9/25/2016 4:54 PM (GMT 0)

GC4249 said...
It sounds like your friend is on one of the immunosuppressant drugs. It's not so much an increased risk of colds or the flu but more serious infections such as UTIs and pneumonia for which patients on immunosuppressants need to be aware. Leukemia, skin cancer, liver issues, joint pain, hair loss etc can also be side effects. Of course, you may or may not get side effects. Similarly, it comes down to weighing up the risks and benefits when it comes to surgery.

If you have not already seen it, there is a recent thread on the "Ulcerative Colitis" forum focused on "What are the reasons not to have surgery?". You might find the responses helpful.

I have also posted below a link to an interview transcript with a UCLA colorectal surgeon, discussing when is the right time to have surgery. The traditional approach is to exhaust all medical options before surgery. But is this the best time to have surgery? Is this the healthiest option? The interview addresses these types of questions and others:

http://www.everydayhealth.com/colitis/webcasts/colitis-and-surgery-why-you-shouldnt-wait-too-long.aspx

Apart from the aspect of physical health, there is also the consideration of psychological health. One significant reason I elected to have surgery rather than spend years trying all the different medications was I found it psychologically overwhelming and exhausting knowing that (even in remission) UC lurked in the background. And I did not see me living comfortably in the long term with daily obsessive worries about how many times I have a BM, whether it's soft or formed, whether there will be blood or not. Three months post-op, now the pain is gone and everything is functioning well, my mind is filled with the enjoyable little things in life rather than consumed by the concerns of UC that once controlled my life.

Pretty much hit the nail on the head, that's exactly how I feel. One is essientally a cure, the other just covers it up so to speak.
I could spend the next few years trying different medication which the chance nothing works. Already spent over half my life being ill constantly, I just want to put
it all behind me as best as I can. Surgery for me personally is looking like the better option.

Ultimately it will come down to the results of my Biopsies, hopefully they can confirm it's UC.

I'm glad you're enjoying life, hopefully in the near future I will be able to join you :-)

Thanks for the link, ill give it a read over when I get some time

Post Edited (imBen) : 9/25/2016 10:58:35 AM (GMT-6)

Posted 9/25/2016 6:15 PM (GMT 0)
Surgery is a very big deal. Equally so, is the decision to take medications when there are side possible effects or an extension of ongoing interruption of your life while experimenting to find out if meds will help you. My son was relatively "healthy" when he went in for the proctocolectomy. He ended up experiencing ileus after surgery and his 3-5 day stay in the hospital turned into 19 days. However, once his small intestines calmed down, he got better everyday afterwards. Yes, he developed an abscess near his stoma that had to be drained, and yes his skin around the stoma got a little messy when his bag leaked. But he changed bag type, and he's doing fine now. In fact, he spent 10 hours in the desert yesterday with friends and family (97 degrees) at OzzFest. They're all going back again today for 10 hours (100 degrees) for Knottfest. Before he left for the show this morning, he described a few times when he had to explain his need to jump to the head of the line for the bathroom to empty his bag, and mention to security during the pat down at the entrance that he has a bag. But he wasn't feeling the symptoms of UC! So it's a much better way to live. No nausea, no bowel pain or worrisome urgency. I don't know what it would have been like had he opted for humira or remicade this spring. He didn't take that option. He chose surgery. It appears it's working out quite well for him. I think it's a very tough choice to make, but you gather info and then just move forward hoping for the best possible outcome. I know that the medications can cause joint pains for some people. My son plays bass and guitar as his main hobby, so that contributed to his decision not to try meds. He had already lost enough and didn't want to wake up with his joints hurting and have to wait out an episode of that before getting to play. It's all very individual.
Posted 9/25/2016 6:24 PM (GMT 0)

JayBee1 said...
Surgery is a very big deal. Equally so, is the decision to take medications when there are side possible effects or an extension of ongoing interruption of your life while experimenting to find out if meds will help you. My son was relatively "healthy" when he went in for the proctocolectomy. He ended up experiencing ileus after surgery and his 3-5 day stay in the hospital turned into 19 days. However, once his small intestines calmed down, he got better everyday afterwards. Yes, he developed an abscess near his stoma that had to be drained, and yes his skin around the stoma got a little messy when his bag leaked. But he changed bag type, and he's doing fine now. In fact, he spent 10 hours in the desert yesterday with friends and family (97 degrees) at OzzFest. They're all going back again today for 10 hours (100 degrees) for Knottfest. Before he left for the show this morning, he described a few times when he had to explain his need to jump to the head of the line for the bathroom to empty his bag, and mention to security during the pat down at the entrance that he has a bag. But he wasn't feeling the symptoms of UC! So it's a much better way to live. No nausea, no bowel pain or worrisome urgency. I don't know what it would have been like had he opted for humira or remicade this spring. He didn't take that option. He chose surgery. It appears it's working out quite well for him. I think it's a very tough choice to make, but you gather info and then just move forward hoping for the best possible outcome. I know that the medications can cause joint pains for some people. My son plays bass and guitar as his main hobby, so that contributed to his decision not to try meds. He had already lost enough and didn't want to wake up with his joints hurting and have to wait out an episode of that before getting to play. It's all very individual.

That is great, shame about the complication during surgery but it sounds as if it paid off. Stories like that make me lean towards a stoma even more. Can't remember the last time I went out for longer than 30 minutes and even then that's to a place I know so got all the toilets mapped out :-)

@GC4249 That article was a good read. First thing I'm going to do is ask to speak a surgeon. Will be able to explain the process in greater detail and I can tell him/her my story and see what they would recommend
Posted 9/25/2016 10:42 PM (GMT 0)
The ileus (basically the small intestine not working) that JayBee's son experienced is fairly common. I experienced it and my hospital stay extended to 12 days because of it. The nasogastric tube was the most horrible experience so be prepared if you have surgery. Also, because of ileus, I did not eat for 9 of the 12 days in hospital which meant I was like a skeleton by the time I left hospital (I had already lost 20kg by the time of surgery and my weight was even lower by the time I left hospital). However, I have regained weight now.

If you have surgery, there will probably be times afterwards when you wonder if things will get better and, at times, it might feel like you are taking one step forward but two steps back. But things do improve and you just need to be patient (and smart - especially avoiding blockages and activities that might promote a hernia).

3 months ago I was exactly like you ... unable to go out (not even for 30 minutes)! But having a stoma has given me freedom again. Hopefully you soon find the path that gives you a good quality of life.

I'm glad that article was useful and best of luck with consulting a surgeon.
Posted 9/25/2016 11:20 PM (GMT 0)
I was merely a witness to the nasogastric tube, and I agree with GC's opinion about it! My son wasn't prepared for that. I wasn't prepared for that... He lost 20lbs during his 19 day stay in the hospital. He also had that moment when he wondered if he'd made a mistake in choosing surgery. It was rough. It doesn't always go this way. Plenty of people have an easier time post op. He is three months post surgery now, regained 10 of the 20lbs he'd lost, he's off all meds, and the steroid headaches have ended, the disrupted sleep from steroids is over, and he's back in college, gone most of the weekend with his friends and brothers at a weekend long rock festival in the desert. He has his Nuun tablets with him, and a pocket with a spare stoma bag... So, he gets to be 21 years old and have fun instead of being 21 and sick. He definitely has more control over his life now. A bag leak is a hell of a lot easier to fix than a UC flare!
Posted 9/27/2016 2:47 PM (GMT 0)
I have a very strong mental attitude when it comes to most things. I know ill be fine with a stoma & if/any complications that may occur along the way. Just got to think about the end results. No pain no gain (I guess that sort of works for this scenario)

Worst thing I find is hanging around waiting for appointments to come round. Tomorrow I see my GI, going to ask to see a surgeon & a pillcam to look in my small bowel, he has to then make those requests. I won't find out about my biopsies for at least 2 weeks. I understand it all takes time, I'm just eager to get started. Sooner I find out what I have the sooner I can make the decision to have an ileostomy/J-pouch, the sooner I can hopefully get on with my life.

Waiting around is horrible
Posted 9/28/2016 10:50 AM (GMT 0)
Just came back from seeing my GI, I made the request to see a surgeon so will hopefully hear about that in a few days, in the mean time he has put me on the immune-suppressant Azathioprine.

He is against me having surgery but did go on to say it's my body so it's my choice. Nothing is set in stone anyway, just want to have a chat with the surgeon to see what he/she thinks
Posted 9/29/2016 11:25 PM (GMT 0)

imBen said...

notsosicklygirl said...
I am happy to hear you're one step closer to finding a solution. I agree 100% on the pill cam. You need some kind of upper bowel series, even if they won't allow for pill cam, perhaps an MRE.

I was wondering how they can diagnose one or the other without checking the small bowel? I was under the impression that UC effects the large bowel and rectum where as Crohns can be anywhere. Surely they would need to check both to give a proper answer?

Maybe what I read was wrong, one of the things I should have asked the stoma nurse but it's one of those things you think of after you have spoken to the person :-)

Obviously both illnesses are a nightmare to have but UC opens up a few options as opposed to Crohns which is a little more complicated.


I opted for some sort of gas this time round and remember everything. Was interesting watching the monitor as the camera made it's way through. Was a little surprised by the way they take tissue samples with a small claw device that then needs a good yank to pull the tissue away. Fascinating stuff but I wouldn't want to do it as a job tongue

The pathology looks different. Mine has always come back conclusively UC - never even questionable. Doesn't mean I couldn't be diagnosed with Crohn's at some point in the future, but hopefully not & in the vast majority, that does not happen. Even with a concrete diagnosis, they will still look at the small bowel before surgery to ensure there is nothing to be seen.

I think you're smart to go on a consultation. There's no reason not to, even if you don't decide to have surgery now, it will just make you more informed, whether you need that information or not, you will be aware. turn
Posted 10/13/2016 2:21 PM (GMT 0)
Good news, finally have an appointment booked with a surgeon. Other than just chatting with the guy to get a feel for him and what he is like along with getting him to explain the operation, what sort of things should I be asking?


Want to make sure he is the right guy for the job :-)
Posted 10/13/2016 2:50 PM (GMT 0)
I remember asking:

How many steps? - I have a j-pouch
Will it be open or laparoscopic?
Time between steps?
How many of these procedures have you performed? (how many per week/month/year/overall)
Effects on fertility & sexual function?
Pain management post surgery?
What to expect post-surgery? How many trips a day?
Do I need any more tests to ensure it's UC? (I had an MRE a week before surgery)
How will you manage the tapering of current meds? (if you're on any)

I didn't ask for a patient referral, but I was a referral for someone else, so you can ask to speak with a past patient. I would have done it if I knew...
Posted 11/22/2016 4:24 PM (GMT 0)
Just came back from speaking with surgeon. Very nice guy and very helpful, seems like the man for the job.
Got to speak with someone else and take a physical test, should that all go well he reckons early next year I could be in for the operation. Fantastic news, wasn't expecting to get one so early
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