Hard, complicated case (spastic ileus)

Hello. Sorry in advance for my English, it’s not my native language.

I do not know to whom to address. My son have a spastic ileus proved by a barium follow through. Barium stagnates up to 8 hours in the terminal ileum. He made barium follow through 2 times with a large interval (about a month), in both cases the spasm was in the same place, same size.

Spasm is proved by the fact that nothing was found on the ileoscopy (looked the same place) except slight ileitis.

Over the past 2 years he developed a lot of problems. Visually aged for about 10 years. Skins look like with Ehlers Danlos Syndrome (but he don’t have any like this condition) and even worst, it’s dry and looks like cigarette paper). Veins appears everywhere wherever is possible. Dizziness. The gait changed. There were cramps. The hands are shaking. There were problems with memory and the ability to formulate a thought. Nervous tics. The pulse at rest was 115. The pressure was 150/90. Half of his hair fell out. Problems with the immune system (constants of acute respiratory disease). In the course of the examinations, they found arthrosis, intervertebral hernia, kidney stones, pancreatitis, duodenitis, pangastritis, ileitis and many other things. Continuous diffuse pain in the abdomen. Burping every 5 minutes. At the same time, before this condition my son health was almost perfect.

No treatment prescribed by the doctors was helped. The only thing that now helps is starvation for few days, parenteral nutrition and atropine injections with the heating of the abdomen. On the parenteral nutrition he looks and feel great. Almost every symptoms gone in just few days, include nervous ticks, paleness, skin problems improves dramatic, pulse become normal. Ordinary antispasmodics do not work. Atropine is a terrible thing. And even atropine does not always help.

Periodically, he drinks macrogol, which helps and seems to push stagnation.

The ignorance of doctors is terrible. My son showed the X ray (barium) pictures to a lot of doctors - they do not even know what it is and how dangerous it is, they all say that "this is normal and there is nothing to fear."

Only when he began to go to doctors with scientific publications about the spastic Ileus they have begun to listen. Some of them. Others despite this show great skepticism, incompetence and ignorance of the situation.

He went around a dozen doctors, including the best gastroenterologists and surgeons of the city. One time he was in the hospital for 2 weeks. No one even try to help.

Even the direction to the barium follow through he asked the gastroenterologist, who did not even know what it is. And if my son did not understand this all by himself, then nothing would be found.

The case personally watched by head of gastro department in emergency hospital - it seems that even she also does not understand anything.

Moreover, even the barium follow throw guessed to make son own himself and atropine injections thanks to the publication on Pubmed: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1426868/pdf/annsurg00757-0091.pdf

(which I think saved life of my son, because before that he even can’t stand up without help).

At the same time, my son becomes worse every day. And if earlier there were more physical symptoms, now neurological ones appeared. He can not eat. As soon as he begins to eat, all the symptoms increase dramatically the next day. He becomes pale as a death. He walks with difficulty, a shaky walk. There was numbness of the limbs, tingling and many other neurological symptoms.

How to be? What to do? We are considering an operation to resect the part of the ileum, but in fact this will not give guarantees that the spasm will not return in another place. In addition, spasm just happens due to surgery and it is possible that the son also developed after appendectomy.

There are many reasons, as the publications describe. Now the son tries to exclude every possible reason, but perhaps some of the doctors came across this condition on personal experience and knows additional reasons. We will be grateful for any help and tips.

Seeing skepticism and ignorance of doctors, I ask you to pay attention to this publication, which describes the spastic ileus: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1426868/pdf/annsurg00757-0091.pdf

And more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2059021/

P.S. Possible causes of spastic ileus:

1. Appendectomy (the son had, but the problems obviously started before her).

2. Inguinal hernia (was in early childhood, but the problems appeared much later).

3. Kidney colics

4. Uremia (as I understand it is acute state, so it’s not possible in his case).

5. Pinching of a testicle within the inguinal canal (ref.: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1426868/pdf/annsurg00757-0091.pdf).

Can anyone explain what is this? My son have pain in right testicle, but doctors says that maybe because of lower back disc hernia. He went (consult) to urologist, but urologist looks like don’t understand what is Pinching of a testicle.

6. Helminths (he pass many tests - all negative.) Also tried empiric dehilmintisation which is recommended by his physician - maybe with very little effect.

7. Lead poisoning

8. CNS

9. GI doctor also said that the spasm can because of the Intracranial pressure. Son pass MRI of the brain and radiologist say that he have only slight 1 of 4 of sign of Intracranial pressure.

10. Damage to the mesentery (need laparoscopy to prove it? Or it's very acute / urgent condition, not chronic?)

11. Postoperative cause (what to do about it?)

12. Because of the strong tension of the muscles (looks like son get this condition after extensive GYM period). What can be done about this?

And my option (I've never met such a thing, but maybe such a reason is possible?): Spasmophilia (because I have permanent vertebral hernia and my son, that is, the entire body is prone to spasms).

P.P.S. The son has tried everything that is possible. Papaverine at the maximum dosages together with platyphylline (analogue of atropine), buscopan, drotaverine and much more. Nothing helps. It is only atropine that helps in maximal doses for a short time.

Once he used 1% atropine sublingually overnight, about 1 drop every 30 minutes. But there were terrible side effects with delirium. After that looks like spasm gone for 3 month and he began to look and feel fantastic. The stink of stool disappeared. Almost everything was normalized, including pulse, blood pressure, skin and hair problems. Recently, spasm returned with the stink of stool and the son literally can not eat right now, lies on total parenteral nutrition, tries to exclude each of the causes and if nothing helps, then he will go to surgery (the doctor has already given direction).

P.P.P.S. This post was published with the consent of my son. My son is 26 years old.

P.P.P.P.S. This post duplicates on many communities and I'm sorry if this break any  but condition of my son is acute and need urgent answer/help. Thanks for understanding.

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