having a rough time of things

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having a rough time of things

Postby jr2 » 18 Apr 2012, 10:08

I don't like to be a downer, but I'm wondering if letting off a little of this despair might help? I don't know. I have such a long history of health problems going back more than 25 years that includes harrowing tests, pain, illnesses, countless medications with devastating effects, painful surgeries that have left their impact with ongoing painful problems, and have off and on suffered with fissures over the course of all those years. But this fissure event, which started in sept. of 2011 is like nothing I have known. Multiple fissures, actually. I have at least 3 and actually one new one that just opened two days ago. I've consulted with different doctors, none of whom think surgery is a good idea for me because surgeries have always turned out so badly for me in the past and because I am at a high risk for complications and a poor outcome. My weight is around 95 pounds and at 5 feet 7 I look horrible. Crohns is a possibility but there isn't any way I can undergo invasive testing to find out at this point.
It is just such a hard thing to endure day after day after day, week after week, month after month, year after year.
The biggest problem with these fissures is there is absolutely no way to get my bowel to behave the way I need it to for fissure healing. No combination of diet, supplements, etc., help. In order to keep stools soft enough I end up with multiple trips to the bathroom every day with diarrhea. Back off at all and the first time in the morning is just too bulky to pass without retearing.
I've tried every kind of diet modification within the limits of what my bowel can tolerate, tried topicals like nifedipine, tried dilation at home (which may have contributed to the new fissure I have going on now).
I'm just really discouraged and having a hard time today. With no plan for anything to bring relief I simply have to learn how to live my life within this context, and come to a point of acceptance, but I'm having a hard time with it. And my weight is really a problem I've got to figure out. It's just that if I eat any more than I am I go to the bathroom even more often.
Thank you to anyone who has read this. I just needed a place to put this today.
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Re: having a rough time of things

Postby thisfissurecankissmybutt » 18 Apr 2012, 11:08

I am sooooooooooo sorry for your pain. I completely understand your feelings of frustration and sense of helplessness (I'm sure most of us here on the forum do). I will keep you in my prayers. Hopefully it will help you a little to know that someone is thinking about you.
Whatever you do, don't stop looking for the answers and don't give up hope.
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Re: having a rough time of things

Postby jr2 » 18 Apr 2012, 11:52

thisfissurecankissmybutt...
Feeling so low and depleted it is the only thing we can do sometimes. to let ourselves be carried by the kindness of others. Thank you so much for giving that to me today.
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Re: having a rough time of things

Postby 44alegna44 » 19 Apr 2012, 14:48

hey jr2.
It's totally understandable and imo expected that you would be feeling at a low point. This fissure ailment in and of itself is enough to drag you down to the lowest of lows. So you being discouraged should come as no surprise considering how long you've had to handle so many many health issues. I'm really sorry for your pain and suffering....pain and suffering is something all of us have felt and can so relate to. So talk it out when you feel the need...I've found it therapeutic throughout my saga..I hope it offers you some source of comfort. And as said in the above post, please don't stop searching for help and don't give up...WE CARE!!!!!!
Best Wishes, Angel
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Re: having a rough time of things

Postby jr2 » 19 Apr 2012, 15:21

Thank you so much, Angel. It means so much to be encouraged and to know there are so many understanding people who totally get how devastating this pain is every day to deal with, and how some days it really does just get you down and discouraged. I just read on the other thread that you are feeling hopeful and encouraged about your recent setback, and I am so glad to have read that. It IS therapeutic to be able to put some of our emotions in a welcoming place. Image
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Re: having a rough time of things

Postby workingonit » 19 Apr 2012, 18:55

JR,
What a terrible time you are having. Image
I know the answers are out there somewhere. You say you have talked to umpteen doctors, but in my experience most doctors don't think outside the box. So please try and find one that does.
I wish I had more wisdom to share... But I am sending you healing thoughts.
-Tanya
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Re: having a rough time of things

Postby jr2 » 19 Apr 2012, 19:40

thank you so much Tanya... Yeah, healing chronic fissures without surgery feels a little like being an explorer searching for a new world. I'm looking into yet more diet modifications and supplement adjustments, and will probably try to find either a TCM practitioner or a Naturopath/integrative medicine physician next. The bright spot in the fissure nightmare is getting a chance to know such awesome supportive people online, like you. Image
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Re: having a rough time of things

Postby MelissaB » 22 Apr 2012, 14:08

I would be looking for a new dr. My CRS looked at me and told me point blank, I can decrease the pain you are having. It may get a little worse before it gets better, but it WILL get better.
Do you live in the states?
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Re: having a rough time of things

Postby jr2 » 22 Apr 2012, 20:36

Melissa...
These days it just feels like I'm never going to get better, and my weight keeps dropping so my energy to keep fighting is really low. That combined with a ton of other health issues to keep track of and I'm just a bit worn out. I really like my current CRS, who is really knowledgeable and open minded, but I am going to look to just seeing what another one might say. Yes, I'm in the US. The wait times where I live to get in to see anyone are really ridiculous, so it's probably going to be a long wait. I'm going to try to keep your comment in mind tonight and try to find some piece of me that still believes it will get better.
I hope you are feeling relaxed and confident tonight about your upcoming surgery and how much better you're going to feel very soon!
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Re: having a rough time of things

Postby mummaof3 » 22 Apr 2012, 20:50

Hey jr2, have you tried Magnesium? I was taking 4 Bio-Magnesium tablets in the morning and 4 at night and wowwww did it get my bowel behaving!!
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