<p>Feel better soon, Donna.</p>
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<p>Donna, you know that there are further treatments, of course – some drastic. But I’m familiar with two people who’ve gone the whole route and are much much more comfortable because of it.</p>
<p>Hate to suggest the trite, but is there a support group that you can join for folks with Crohn’s? Sometimes the best thing is to hear that you’re not quite so lonely in your struggles…</p>
<p>Very Happy, I think I can guess what you’re referring to if you’re talking about surgical solutions, but I already had my large intestine removed > 25 years ago. That’s where the Crohn’s was; to the extent it still flares up it does so at and around the ileorectal anastomosis. But that’s not where the obstructions are; the obstructions, when I have them, are in my small intestine (where I don’t have Crohn’s), and are generally – and somewhat ironically – caused by adhesions from the old surgery itself. It’s not like taking out pieces of my healthy small intestine would prevent them from recurring; and it’s not like an ileostomy would help either. I don’t think there’s any known way to prevent them. When I had emergency surgery in 2004 because of a complete obstruction that almost killed me, they wrapped some kind of mesh around and between my small intestines in the hope of preventing future problems, but they told me that there was no guarantee it would work, and it clearly hasn’t worked so well. So, really, it’s the total unpredictability of the whole thing, and the fact that there’s nothing I can do, no medicine I can take, to prevent it, let alone “cure” anything, that’s so scary. Plus the fact that it’s so excruciatingly, unbearably painful when it happens.</p>
<p>Crohn’s itself, after all these years, I kind of “get” and I’m used to dealing with. At least there are usually warning signs of a flareup. This, not so much. Which is why I’ve become convinced, somewhat (but not entirely) irrationally, that it’s going to be one of these episodes that finally kills me. (I still remember how frightened I was back in 2004 when the doctors said, listen, if we don’t operate, you’ll be dead within 6 hours, and even if we do, you may not make it. I was worried as much about J., and leaving him, as I was about myself; he was only 13 then. I made the friend who kept me company as I was being wheeled into the operating room promise that she would keep an eye on him for me. Which made me feel a little better, and prepared to go to sleep. Temporarily or otherwise. At least now, I can try to tell myself that he doesn’t need me so much anymore. Not that I really believe that, not after I realized how devastated and frightened he was last summer when he thought he was going to lose me.)</p>
<p>There’s Remicade, that intravenous immunosuppressive drug, but that’s really for people with intractable flareups of Crohn’s itself, not this kind of thing. Besides, that drug does have a fairly high mortality rate from its use, and given my luck I’d probably be one of them. Especially given how horrendously badly I reacted the one time I did try immunosuppressive drugs many years ago. </p>
<p>Aibarr, I do belong to an online support group for people with Crohn’s. To be honest, I find it too depressing. Everybody else seems to be so much worse off than I am, but I can relate to their problems – since I’ve experienced most of them at one time or another – and can’t help empathizing, so it all just makes me feel worse, too. It’s not like anyone’s ever cured of Crohn’s; there are just remissions of varying lengths of time. And what just happened to me isn’t really a Crohn’s problem, not directly or exactly, anyway.</p>
<p>I’m sorry for sounding so negative; I do very much appreciate your being so helpful. Usually, believe it or not, I’m a pretty optimistic person and believe that things will work out OK in the end, just as they always have in the past. (Sort of, anyway!) I’ve never really thought of myself as being chronically ill, or as having any kind of disability, even though I suppose I could. Today, I’m just not feeling very positive.</p>
<p>^^^^I doubt it will help, but I just wanted to say I’m sorry you are feeling crummy and frustrated. I know from my husband’s illness that intestinal issues can be quite devastating. They can really interfere with life and any kind of chronic pain can color our perceptions/enjoyment of life.</p>
<p>I hope you feel better soon.</p>
<p>Donna, several years ago, I took a class (working toward my master’s degree) from Stephen A. Schmidt at The Institute for Pastoral Studies/Loyola-Chicago, called The Theologies of Suffering. I do believe it was one of the best classes I ever took, and one I learned the most from in how to best understand those who have a chronic illness. Dr. Schmidt (he must be in his late 70s by now) was diagnosed with Crohn’s disease many, many years ago and I believe one of his adult children now has it. He wrote a book, Living With Chronic Illness that is awesome. His theology is very pluralistic, so it’s not offensive to a non-Christian, although he does present what helps get him through the rough times and find hope for the future. Here’s a link to the book, if you think you’d like to read it: [Amazon.com:</a> Living With Chronic Illness: The Challenge of Adjustment (Christian Growth Books) (9780806624013): Stephen A. Schmidt: Books](<a href=“http://www.amazon.com/Living-Chronic-Illness-Challenge-Adjustment/dp/0806624019/ref=cm_cr-mr-title]Amazon.com:”>http://www.amazon.com/Living-Chronic-Illness-Challenge-Adjustment/dp/0806624019/ref=cm_cr-mr-title)</p>
<p>I know support groups are not for everyone, but perhaps reading his book will be an inspiration for you. Hang in there.</p>
<p>Thank you, teriwtt. It sounds like it might be worth looking at. And thanks for your support, Nrdsb4.</p>
<p>I’m sure I’ll be more cheerful soon. I just get this way sometimes.</p>
<p>Well, that’s sure understandable…! Feel free to ‘get this way’ around us.</p>
<p>I have a friend who has Crohn’s; she’s one of the most dynamic people I know. Had an attack when she was on her Birthright trip to Israel and spent a couple of months after her first resection. She’s working on her PhD in San Francisco in her own made-up field: medical history! Maybe instead of a Crohn’s support group what you need is a cool-people-living-vibrantly-awesome-lives support group, instead… There should be more of those. I’ll ponder… There’s gotta be something…</p>
<p>Donna- if it brings a smile to you- I’m amazed at the depths of low blood sugar or cramps or whatever- you are SO incredibly articulate! Hang in there…</p>