How do you decide it's time?

I'm 23 and have had IBD since I was 12. My quality life has been poor and I'm literally home bound. Have done nothing with my life and it upsets me. Seeing on your friends/brothers getting on with their lifes, going on holidays etc.. and I can't even manage to go up town which is 5 minutes away.

Last month I spoke with my doctor about getting an ostomy. He thinks I'm rushing into it because I have been on very few drugs compared to most people. I'm currently on prednisolne for 2 months and at the end he wants to put me on a immunesuppressant, which one I'm not sure.

Here is my problem, how long do you wait? How long do I spend trying all these new drugs? It could take years to find one that might work then there is the chance of nothing working at all.

I'm an easy going person, the idea of a bag doesn't faze me at all and I was actually very excited after researching the subject and luckily we have a Stoma nurse in the family who I had a good ol'chat with. Like most things I would just get used to it and continue on.

This Thursday I'm going in for a colonoscopy so myself and my doctor can see what's going in. He thinks I more likely have Crohns diease. Now if I had UC, I would push for the bag no questions ask but it seems Crohns is more complicated as it effects the whole system so you can't bypass/remove the infected area.

I know there are plenty of people on this forum with both, I was wondering if someone could share there story with having Crohns and getting an ostomy. Was it for the better or did nothing change?


Also, if you were in my position. Would you continue to try new medication or take the leap and get a bag?


Look forward to hearing from you
Thanks in advance

suebear said...
It's a quandry.......but the decision is ultimately yours. I had a 2.5 year flare that did not respond to anything but prednisone; ultimately I feared long term side effects of prednisone far more than I feared surgery. When I had my surgery the last drug for UC was 6MP. I'm really glad I never had to take Remicade or Humira....because I think it would have only bought me time.

Remember, GI's are all about trying to keep you from surgery, and that's not a bad thing. My surgeon told me that in his opinion the #1 reason to have surgery is to increase quality of life. By the time I opted for surgery I had been housebound for months, had no social life, and only worked. It was depressing.

Sue

Hello Sue, thanks for replying

I can understand they want to try other things but much like your old self (hopefully you're doing much better now) I have no quality of life. Going to the local shops is a major event. I have no social life, I don't go out, working is impossible due to visiting the toilet constantly, cramps, gas, always tired etc.. Then you have to watch what you eat, always on medication etc..

Depending on what they find this Thursday ill give it a good think over. If I do have Crohns is still worth considering an ostomy?
I ask because I was always under the assumption I had UC so everything I read/looked into is UC related. Getting a bag is essientally a "cure" but with Crohns because it's not limited to the one area it's difficult to manage.

I am so sorry you haven't been able to get a decent diagnosis or treatment in so many years. In my opinion this is a huge mistake on the part of your doctors - and I wonder why your parents werern't more preactive in finding answers?

I personally don't think you should rush to have surgery at this time. If I were you, I would go to an IBD center and find the best GI possible. Firstly, you need to find out what type of IBD you have before making any decisions - especially ones that are permanent and impact your future in such a profound way. Secondly, you might respond very quickly to a medication - you might be the lucky person who just needs 6mp and you live normally for the rest of your life - on a low dose...

You're frustrated and it sounds like you're very down, and it's 100% understandable - we all feel like that, especially when our health isn't where it should be. Watching other people get out and live life, while you feel like you've been unable to live yours - is the worst, and it's not fair and I don't even know whether it should have been this way all this time. You really should have had the opportunity to try medication - if you had, you would be in a better place to decide what to do next - or maybe you wouldn't have to, maybe you would be out living life, on a treatment that works for you, without any worries about the toilet.

That said, I had jpouch surgery. My pathology has always come back 100% UC - with Crohn's a j-pouch isn't recommended and usually isn't offered - but you also have to remember with Chron's, surgery isn't considered curative in many cases. If you have Crohn's, you definitely need to avoid surgery. If you have UC, a jpouch might be an option (if it comes to that) and you wouldn't need an external bag. It's an internal pouch made of your small intestine. You go more times, but you have great control. I love my life since surgery. Before, I was like you - home bound and depressed. You should talk to someone about the way you feel - and also get more opinions on your condition. Get concrete diagnosis. Try options for treating - if it's UC and all else fails - meet with a surgeon.

notsosicklygirl said...
I am so sorry you haven't been able to get a decent diagnosis or treatment in so many years. In my opinion this is a huge mistake on the part of your doctors - and I wonder why your parents werern't more preactive in finding answers?

I personally don't think you should rush to have surgery at this time. If I were you, I would go to an IBD center and find the best GI possible. Firstly, you need to find out what type of IBD you have before making any decisions - especially ones that are permanent and impact your future in such a profound way. Secondly, you might respond very quickly to a medication - you might be the lucky person who just needs 6mp and you live normally for the rest of your life - on a low dose...

You're frustrated and it sounds like you're very down, and it's 100% understandable - we all feel like that, especially when our health isn't where it should be. Watching other people get out and live life, while you feel like you've been unable to live yours - is the worst, and it's not fair and I don't even know whether it should have been this way all this time. You really should have had the opportunity to try medication - if you had, you would be in a better place to decide what to do next - or maybe you wouldn't have to, maybe you would be out living life, on a treatment that works for you, without any worries about the toilet.

That said, I had jpouch surgery. My pathology has always come back 100% UC - with Crohn's a j-pouch isn't recommended and usually isn't offered - but you also have to remember with Chron's, surgery isn't considered curative in many cases. If you have Crohn's, you definitely need to avoid surgery. If you have UC, a jpouch might be an option (if it comes to that) and you wouldn't need an external bag. It's an internal pouch made of your small intestine. You go more times, but you have great control. I love my life since surgery. Before, I was like you - home bound and depressed. You should talk to someone about the way you feel - and also get more opinions on your condition. Get concrete diagnosis. Try options for treating - if it's UC and all else fails - meet with a surgeon.

My problem is I'm not really a talker. Unless I'm about to drop dead I just get on with things and I guess suffer in silence.
It's only really been the last 5 years where I have had lots of flare ups and I'm guessing its partly to do with me being at the age where I should be working, going out with friends, living a normal. A lot of the time Prednisolne is and was the only thing to get it under control but I have gotten to the point where I'm just fed up with it all. My parents have and are doing a lot for me which I'm greatful for. Also it doesn't help that I have had 3-4 doctors over the years due to people leaving and in one case she was completely useless that I asked for another. Her response to me having IBD was "I know plenty of 5 year olds who have IDB and get on with their lives" Needless to say, that pissed me off.

I did read about the J-pouch, seems to be hit or miss. Another forum it seemed like a lot of people were reverting back to the ileostomy bag. Everyone has a different experience so that would have to be something I try myself and see how I get on.

I have tried a few "alternative treaments" which some of you may have heard of. Helminthic therapy which I'm 6-7 months into now which certainly helped, I can't deny that but it's not doing as well as I would have liked.

Hopefully Thursday ill have the camera, meet my specialist the following week and find out what I have and then decide where to go next.

Thanks for all the answers everyone, I appreciate it

Ben

bania said...
Ben -
I have Crohn's and have a permanent ostomy. In my case I opted for the surgery after going through an 8 month severe flare during which I went through every medication available and nothing, not even prednisone, was working. You stated that you haven't tried too many drugs yet. What drugs have you tried and what happened with them?

I would advise you not to rush into surgery without a firm diagnosis of which type of IBD you have. If it's UC then you can have either an ostomy or a J-pouch and theoretically be done with the disease. If it's Crohn's then you can have an ostomy and not have problems in the colon ever again, but you are certainly not done with the disease and still will need to be on medication.

Even if you have UC, having an ostomy won't rid you of your GI problems. You will still have to be very careful what you eat and the threat of obstructions is always there. While I have not had a Crohn's flare in the 2 1/2 years since my surgery (I'm on Entyvio for maintenance), this spring a kink in my intestine near the stoma caused a stricture which resulted in multiple obstructions and hospitalizations. I eventually needed another surgery to cut out the stricture and form a new stoma. This obviously doesn't happen to everybody but you do need to understand that an ostomy can bring its own problems.

All that being said, my ostomy surgery absolutely gave me a quality of life that I did not have since before I got sick when I was a child. No more bathroom anxiety, tremendous weight gain (which is good for me), more energy, and did I mention no more bathroom anxiety? It's often a last resort, but it does have tremendous benefits. I realize the Crohn's will likely come back eventually but despite that and the stricture issues I had, the surgery was definitely the right choice for me. (Of course, my other choice was likely death. I was pretty darn sick.)

Hey Bania

There were several years ago I was on, can't remember the name(s) for the life of me but I was eventually told to stop taking them. The only regular medication I'm on is pentasa daily and prednisone during flare ups. Right now I'm on a 2 month course of pred. When I see my doctor next week he is going to give me something else to try.

I understand all the risks and problems that could occur and I'm ready to face them should it come down to it. I'm actually a twin (he obviously got all the luck as nothing is wrong with him ) his girlfriends mum is the head stoma nurse in the region. She came round a few weeks ago and we chatted away for hours. Explained the in's and out's which was perfect. Left me a goodie bag? of information to look through.

Colonoscopy this Thursday. I want them to have a look at my small intestine as well so will be asking about that next.
What ever happens I will always make the best of it

bania said...
Ben, good luck with the scope. Let us know how it goes. Were any of the drugs you have taken in the past biologics (Remicade, Humira, Simponi)? Were any injected or given by IV infusion? I ask because these drugs are significantly more effective than Pentasa and prednisone. I'm sure your GI will discuss these with you after the scope. Having a stoma nurse in the family is a definite perk! I wish I had one!

I'm positive I have not been on any of those, not even heard of Simponi before. From a colonoscopy they can't tell if you have UC because they can't check the small bowel so will I be needing some sort of other camera?

Hi Ben,
I lurk about on this board from time to time because I have a son who was dxed with UC two years ago when he was just 19. I've found the people here very knowledgable and supportive, so you're probably getting lots of good advice just as I did when my son had a proctocolectomy in June.

You remind me of my son who is a college student when he was trying to have a fun life around the symptoms of this disease. I wanted to tell you that during his most recent flare up this spring, two doctors told him it was time to get on the biologics. Until then, he had been taking mesalazine, steroids, and delzicol. He wanted nothing to do with experimenting with potential side effects of the biologics he was being offered.

He opted for the surgery and scheduled it after being forced to take a medical leave of absence from school. He made a decision to get an ileostomy and skip the j-pouch. I would say he received some surprising pushback from his GI Doctor who was not in favor of the proctocolectomy. But you know what? It was NOT the GIs decision to make. It was my son's decision to make for his own health, his own happiness, his life. It's also YOUR choice to make this decision for your body. Once you get that colonoscopy and the results, you get to decide how you're going to proceed. Definitely hear out your doctors. They know a lot! But they don't live in your body. Don't let yourself be talked into something you don't want to do.

My son saw a fabulous colorectal surgeon who has a stellar reputation. She assumed he was going for the J-pouch. They conducted a large portion of their appointment with her believing he was going for the pouch. When he said no... He wanted the permanent ileostomy, they discussed it for a bit so that she was confident he knew what he was requesting, and then she happily deferred to his choice. She even said to him that informed patients know what they want and she had learned some time back not to talk a well-informed patient into or out of their preference.

That's how I believe the doctors should be dealing with you. You have a right to make decisions about your health. Informed decisions, of course. You shouldn't be talked into drugs that may or may not work and that have side effects. If you don't want to to try the medications, you don't have to. And you shouldn't be talked out of a surgery you are a good candidate for.

That being said, The surgery was rough, so don't underestimate that aspect of it all! The surgery is what motivated me to seek advice from folks here. I needed reassurance things were going to be ok. Seems everyone here chimed in and the things they told me all came to pass.

My son is back in college, off of ALL medications, regaining strength, working out in the gym, working out which is the best bag system for him and totally moving on with being 21 years old and in college. His bag doesn't interfere with his guitar playing, he is eating whatever he wants now that everything's calmed down... Veggies, coffee, etc. Life is good and getting better. I just thought you should be encouraged to claim ownership for your own health decisions, stay informed, and expect a good quality of life. I hope you get out with friends and family sooner rather than later! (But if you opt for surgery, you're gonna feel a little worse before the feeling better kicks in!!)

Post Edited (JayBee1) : 9/20/2016 11:13:53 PM (GMT-6)

imBen said...

notsosicklygirl said...
I am so sorry you haven't been able to get a decent diagnosis or treatment in so many years. In my opinion this is a huge mistake on the part of your doctors - and I wonder why your parents werern't more preactive in finding answers?

I personally don't think you should rush to have surgery at this time. If I were you, I would go to an IBD center and find the best GI possible. Firstly, you need to find out what type of IBD you have before making any decisions - especially ones that are permanent and impact your future in such a profound way. Secondly, you might respond very quickly to a medication - you might be the lucky person who just needs 6mp and you live normally for the rest of your life - on a low dose...

You're frustrated and it sounds like you're very down, and it's 100% understandable - we all feel like that, especially when our health isn't where it should be. Watching other people get out and live life, while you feel like you've been unable to live yours - is the worst, and it's not fair and I don't even know whether it should have been this way all this time. You really should have had the opportunity to try medication - if you had, you would be in a better place to decide what to do next - or maybe you wouldn't have to, maybe you would be out living life, on a treatment that works for you, without any worries about the toilet.

That said, I had jpouch surgery. My pathology has always come back 100% UC - with Crohn's a j-pouch isn't recommended and usually isn't offered - but you also have to remember with Chron's, surgery isn't considered curative in many cases. If you have Crohn's, you definitely need to avoid surgery. If you have UC, a jpouch might be an option (if it comes to that) and you wouldn't need an external bag. It's an internal pouch made of your small intestine. You go more times, but you have great control. I love my life since surgery. Before, I was like you - home bound and depressed. You should talk to someone about the way you feel - and also get more opinions on your condition. Get concrete diagnosis. Try options for treating - if it's UC and all else fails - meet with a surgeon.

My problem is I'm not really a talker. Unless I'm about to drop dead I just get on with things and I guess suffer in silence.
It's only really been the last 5 years where I have had lots of flare ups and I'm guessing its partly to do with me being at the age where I should be working, going out with friends, living a normal. A lot of the time Prednisolne is and was the only thing to get it under control but I have gotten to the point where I'm just fed up with it all. My parents have and are doing a lot for me which I'm greatful for. Also it doesn't help that I have had 3-4 doctors over the years due to people leaving and in one case she was completely useless that I asked for another. Her response to me having IBD was "I know plenty of 5 year olds who have IDB and get on with their lives" Needless to say, that pissed me off.

I did read about the J-pouch, seems to be hit or miss. Another forum it seemed like a lot of people were reverting back to the ileostomy bag. Everyone has a different experience so that would have to be something I try myself and see how I get on.

I have tried a few "alternative treaments" which some of you may have heard of. Helminthic therapy which I'm 6-7 months into now which certainly helped, I can't deny that but it's not doing as well as I would have liked.

Hopefully Thursday ill have the camera, meet my specialist the following week and find out what I have and then decide where to go next.

Thanks for all the answers everyone, I appreciate it

Ben

That doctor sounds terrible. I would run the other way. It's great that your parents are helpful, but 5 years with ups and downs, is really difficult on anyone. I am hard-headed too and I hate making a big deal about my problems, so I get it, you try your best to make it seem like you're okay. I think you're going to have to be your own advocate and let your parents know you need to do further investigation, whatever it takes, to get the firm diagnosis you need to get the correct treatment. You're too young to spend your life with all these limitations. Please continue seeking answers, find out what you're dealing with, try some of the options, and when you've had enough, consult with a surgeon - but don't give up without a fight (though it sounds like you've already given quite the fight - so if you're ready, that's for you to decide) Have you been having stool tests? tried antibiotics? How is your blood work? inflammatory markers high? Calprotectin? Why did you stop the Helminthic treatments if they were working, or are you still doing them? Have you ever had c diff?

Ben, I'm just curious about the biologics (Remicade, Humira, Simponi, Cimzia, Entyvio). You have not tried any but has your doctor ever suggested them? Pentasa is basically no better than a placebo and prednisone you can't be on long term. You've been sick for a long time. If your doctor has not suggested them then he is not a very good doctor. If he has suggested them and you have been reluctant to take them, then that is a different story. As you can see on this thread, some people shy away from them because they are afraid of potential side effects, some people take them and have side effects or they don't help, and some people take them and it dramatically changes their lives for the better.

I was on Humira for 9 years with few side effects and it kept me in remission, giving me a life. It eventually stopped working, as is often the case with biologics. I'm on Entyvio now with no side effects and I've been in remission with it for over two years. Despite the scary side effects listed on the drug packaging, most people do fine on them and they can do great help.

As both you and the other posters are saying, you need to be an empowered patient. No one cares more or knows more about your body than you. Ultimately you will have to be the one calling the shots.

Ben,
My son's symptoms began suddenly during his freshman year in college. He assumed he'd developed hemmoroids because of pain in that area. UC often begins in the rectum. Within 4 months of that issue, he was hospitalized, bleeding, skinny, and being told he likely had UC. He had his first colonoscopy while hospitalized. They couldn't go far because his colon was a mess. His sophomore year in college was a battle to keep the disease at bay with enemas, delzicol, and steroids during flares. He made it until the spring of his junior year. Less than a year and a half after the "likely UC" dx. His spring flare was breaking through the steroids and meds. He was hospitalized again. He took a medical leave from school, dismissed his GI, and called a colorectal surgeon with a great reputation. He explained his schedule regarding college. He wanted this surgery asap. His quality of life was trash, biologics were next on the GIs menu, and his future aspirations were on hold because he couldn't attend classes in this condition. He was counseled by the colorectal surgeon who looked at his slim medical files. Everything pointed to UC, but it wasn't 100%. During his proctocolectomy, she also removed a piece of his small intestines and had them tested for disease activity. She informed him that there was no disease in his small intestines and that he had pan colitis. All of his colon had ulcers.

So, I know it's ideal to get a perfect dx of disease (UC or Crohns) but I don't believe you always can. I'm just saying this because I know there's a hard push to get that definitive dx first, but even if they had found disease activity in my son's small intestines.... His colon, rectum, anus... All had to go. I will not lie, or be dismissive of how scary this was. It was terrifying. He chose to take that leap based on the info he had in hand. His docs were informed to the best of their ability given the info available. You're on the verge of getting a lot more information from the colonoscopy you have scheduled for tomorrow. I hope you get very clear direction from the info, but you may still end up having to do a little guessing about how you want to proceed.

GC4249 said...
When I was deciding between drugs and surgery, one thing I pondered was not so much whether I would have side effects from the drugs after a few years or so but what impact the drugs would have on my body after taking them for 30 or 40 years. I will never know .... I just could not see myself taking drugs for the rest of my life and still knowing UC could flare at any time. It seemed like suspended terror to me. Less concerning was life with a bag .... and so far it has proven to be liberating. After months trapped at home, I am enjoying getting out and about. Best of luck with your decision and hope you get to enjoy life before too long.

That's pretty much how I feel about it. To me, a bag really doesn't seem like a big deal

Just started my second litre of the MOVIPREP stuff, I think it gets worse with every mouthful

Ugh, MOVIPREP. Good luck with that, it's nasty. One huge upside of having an ileostomy is no more prep - ever. If you have to have an ileoscopy (where they put the scope through the stoma) the only prep is a clear liquid diet. Some GI's don't even require that.

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.