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I've been diagnosed with DOLICHOCOLON and have extremely severe symptoms.

I have been dealing with extremely severe symptoms of Dolichocolon for 2 years now, have seen many doctors who aren't familiar enough with the rare condition to treat it, can't find enough info online about it and am about at my breaking point in dealing with these symptoms because they are progressively getting much worse. I finally found a surgeon to see me on Oct. 11, who might be able to help, but if that is another dead end, I don't know what I will do. There has to be others out there, dealing with this. I have listed my symptoms, etc. below....

September 2017 CURRENT SYMPTOMS  

1. Abdominal pain and cramping every single day (some days a 3 or 4, on a pain scale from 1-10, where it’s uncomfortable, painful, but somewhat manageable) to days where it’s a full blown 10 on the pain scale to where I have what I call a “stomach attack” and become debilitated with pain.
2. Extreme constipation, often a partial to full blockage feeling, having to use enemas every single day to get some relief from the pain/discomfort. It feels like the enemas only evacuate 10-30% of the stool each time, with a feeling of a lot of stool still inside me.
3. Feeling of having large hemorrhoids, which feel like they are causing the blockage of stool. The blockage definitely does NOT feel like it’s stool, but a tissue, like maybe a hemorrhoid or something else, right inside the anal cavity, blocking the stool from getting past it. I have been using hemorrhoid suppositories at least twice a day to try to shrink the hemorrhoid that I feel is blocking the stool from coming out. This works only about 10-30%. I still feel like something (the hemorrhoid?) is blocking the rest of the stool from coming out.
4. Extreme bloating, gas pain, distention of stomach (some days to the point where it looks like I am 9 months pregnant).
5.Often times I get a hardened stomach to where it feels like it’s all the way around my abdomen, pressing against my lower back causing me worsened lower back pain, as well.
6. Sometimes my abdomen will produce loud, gurgling, churning sounds, and I can feel something in my stomach/abdomen moving around, which causes intensely painful cramping and extreme discomfort.
7. When a full blown “attack” occurs and is at a 10 on the pain scale, I get short of breath, hard time breathing, chest pain, sweating, yet goose pimples, nausea, light headedness, feeling like my stomach is going to explode from the intense, painful pressure, doubled over in pain, debilitating to the point where I can hardly move.
8. Occasional blood and a lot of mucus left over in the stool. The stool is also extremely, unusually foul smelling.
9 This pain has affected my emotional well being, my mental state, and my overall health in a very negative way, limiting my quality of life.
10. Eating anything or not having a bowel movement every day, seems to make the pain much more intense. But, I also experience this intense pain sometimes when I haven’t eaten anything.
11. Frequent urination. (I add this symptom to the list because I feel like my colon or something is pushing on my bladder, causing me to feel the need to urinate much more than usual. I also have to strain in order to urinate, with a lot of stopping and starting, not a steady stream).

* I have tried several prescription medications, currently taking Linzness, which is not helping at all, tried over the counter medications, such as Gas-X, Charcoal tablets, Milk of Magnesia, Pepto Bismol, stool softeners, stimulants, laxatives in pill form, prune juice, magnesium citrate,  Antacids/Tums, and various other OTC medications, NONE of which help with the pain.

The only few things that do sometimes help to relieve some of the pain are enemas, the hemorrhoid suppositories, a heating pad (when the pain isn’t completely out of control), and I have had to resort to the pain medication, Percocet, which I use very sparingly because of its potential, addictive qualities. I “white knuckle it” a lot without using the pain medication, but that is getting more difficult because I have been dealing with this intense pain for so long now that it’s truly wearing me down to the point where I just want relief, any way I can get it. I am so very tired and frustrated with having to deal, daily with this problem and I really need help for it to somehow get it resolved, fix it, and find answers as to how this can be accomplished.
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